Since re-opening The Family Patch my to-do list has grown immeasurably. Not only am I now writing two blogs, but I am also working on products, services and resources behind-the-scenes for both (and a new venture that pulls them both together under a single brand). No easy feat, especially when you consider I also work 3 days a week and Little Man still only does 15 hours a week at pre-school!
But my to-do list became pretty epic last week when on top of all of the above, I was struck down with the flu (so out of action for several days, and still not fully up to speed). And I’m pulling extra shifts at work to cover holidays and absences. Let’s just say spare time is not a word I recognise right now…
So you’d be forgiven for thinking that taking time-out for a walk in the local Arboretum would be bottom of my life of things to do. I mean, with laundry piles as high as my waist, a house to tidy, and two blog posts to hash out today, a walk in the park really shouldn’t be a priority, should it? But you know what, I’m starting to learn that the less time I have the more time I should make for simply stopping to smell the roses.
I’m far more productive when I take time out to relax and breath and recentre myself, especially in light of my focus on “Healing” this year. And so that’s what I did – I dropped Little Man off at pre-school and then went for a walk. With my camera. Because it’s a beautiful day. And I’m so glad I did, because here’s what I found…
Such happy sights of Spring! They filled my heart with joy and reminded me of the wonder and beauty in nature that I so often overlook and miss as I whizz about from one task to the next, forgetting to sit back and watch as nature unfolds her bounty year after year!
Tell me – do you ever ditch the to-do list in favour of taking some time out?
I’m linking up with #sharethejoy again this week as my walk in the park really brought me so much joy today!
Well, hello there! It seems like such a long time since we spoke, and I have missed you on so many occasions. How have you been?
I kind of disappeared all of a sudden, without very much warning, didn’t I? I hadn’t realised just quite how confusing that would be until several of you mentioned wondering where I had disappeared too. The truth is that I had an epiphany moment one day when I realised I needed to step away for the sake of my own well-being and I wasn’t even sure I’d come back.
Have you ever had a moment like that, when out of nowhere you just know you need to step away for a while in order to find your feet once more? Looking back I can see that I had known deep in my heart I needed to do it for such a long time but, as is so often the case, I resisted it for far too long. So when that moment of clarity arrived I acted upon it swiftly and surely and I didn’t look back.
I cannot tell you how good it has been for my soul to put that distance between myself and what I had been doing here at The Patch. The past 5 years have been such a massive challenge for my little family in so many ways and by blogging so openly and honestly about it I found that every time I came online I was reminded of each battle, each wound, each pain. I wasn’t able to give my heart, soul, mind, or body chance to heal and that was what I so desperately needed to do.
So you can imagine how amazing it felt to get away, put some distance between myself and the past, and allow myself the chance to begin finding out who I am now and what I want from life. It’s an ongoing process but I finally feel like I have reached a place where I am able to see the scars healing where there were only open wounds a few months ago. I think the best way to sum this up is in a thought that came to me just the other day…
If you want to add value to the lives of others, you have to first add value to your own
It’s akin to the old saying “Healer, Heal Thyself” really isn’t it? For too long now I have been trying to help inspire, encourage, and support others when I desperately needed to do that for myself first. Over the past few weeks I have started taking great strides in that direction and I have to say it is really making things flow in such a different way than they were before.
Words are suddenly pouring out of my heart and onto the page where once the fear within me kept them locked up. And opportunities to make life-long dreams come true are starting to appear, making me wonder how on earth I ever missed the connection that seems so obvious now (more on this later, it is a whole new direction for me which I’m currently working on behind the scenes).
Even more amazing, for me, is that now that I have started to value my own well-being enough to ask for help I am finding that support is coming from so many different directions I can hardly believe it . Just this past week an unexpected package arrived in the post which came at exactly the moment I was beginning to question things that only a gift like that could answer. And suddenly I find that I have the overwhelming urge to reopen The Family Patch and start reconnecting with you all with a lighter heart and a happier mind.
I’ve given it all a bit of a freshen up, to mark the occasion as I come back to blogging here, but don’t be surprised if it continues to change over the coming weeks. For the first time in far too long I actually feel like it doesn’t matter what I write or how I write it here at The Patch – this space is my own and it is a place for me to do what matters to me. That freedom is something that has been lacking for far too long here and I am so happy to change it.
So, all I have left to say is that I am so very glad to welcome you back here to my little online home. I do so love having you here and I cannot wait to catch up with you all.
I’m sharing this post with the #sharethejoy linky over at The Joy Chaser as being back here at The Family Patch really does bring me a lot of joy!
Today marks The Winter Solstice, the longest night of the year and the point at which the light begins to return to the world once more. This time last year I wrote a post called Solstice Reflections and reading back over it I am reminded of both major similarities and differences between this time last year and where I am today (it’s like a spiral dance).
Like last year, I have been very sick lately, pushing myself further and further until breaking point at the beginning of December. What is it about me and refusing to stop until something (usually my body) forces me to? But unlike last year, I am in a much better place both mentally and spiritually, if not necessarily physically.
I remember writing about how 2014 had been a year so tough that I felt like my soul had shattered into a thousand tiny pieces. Whilst that sounds horrendous, and it was in many ways, it was also a total blessing in disguise. It led me to choosing “Surrender” as my word for 2015 and surrender I have.
These past 12 months I lost my job, moved home, watched a loved one suffer greatly, found two new jobs, supported my husband in a new job as well, helped Little Man adjust to a new home and nursery, and begun to really find my feet with blogging again (two major highlights of which were reading this poem as part of the BritMums Live Bloggers’ Keynote and my recent post on the BritMums Blog about Endometriosis).
I could never have coped with all of these changes without first surrendering to the natural flow of life, which has taught me that no matter how dark things may seem, there is always a light at the end of the tunnel. For the first time in my life, I learnt to accept what is and go with the flow rather than fighting a losing battle. And it has been great.
But I still have a long way to go – this journey is far from over! Whilst I have moved with the flow, this year has moved at such great speed (how can it be December already?!) that my heart, body and soul all need time to adjust. Physically I am beat, and despite my best efforts, pushing onwards regardless has left me very weak. Which leads me to only one conclusion – my focus for 2016 needs to be that of Healing.
If you follow me on instagram, you may have seen that recently I started reading a fascinating book called The Healing Power of The Sacred Woman by Christine Page. Within its pages I have discovered the need to really embrace that which fills me with joy, making time to express myself creatively rather than stifling that great spring of inspiration whilst putting everything and everyone else first. As the author states, it’s often those who are “too nice” who get ill… I feel very much like this is a message I needed to hear (from someone other than my mother – sorry, mum, I know you’ve been telling me this for a long time now!)
Whilst it feels totally against my nature to do so, I have decided it is crucial that I do it. Putting myself first doesn’t mean that I no longer care about others, but rather that I am beginning to understand that only through self nurture can I have the strength needed to truly nurture others (without burning myself out entirely).
So, how am I going to do that?
Well, my thinking is this – I need to take a serious amount of time “out” to focus on the healing power within me, which for me comes very much through the time and space to create and write. I am a writer, it’s what I do. My teachers knew it at school. My friends and family have known it for years. My blog readers have often commented on it, and so have colleagues from time to time. And when I think about it, I realise that I know it too and always have – writing brings me complete joy (regardless of the subject) and when I write I tap into a powerful force of nature, that flows through me, easing my soul.
Looking back over the year I can see that I have started to do this, sharing poems such as Yet Still We Stand and How Long Must We Wait this year, but would you believe there was a time, around 10 years ago, when I wrote something new almost every day? And that year I was happier and healthier than I think I have ever been!
So, for the next few months I want to focus specifically on this – finding time to write and be inspired by the world around me. There is a novel I wrote a first draft of in 2010 which I am longing to rework and expand, and there are opportunities to write stories and poems that reflect all that is happening in our lives. There is also Spirit Kid Network to begin building, a process which I hope to turn into a creative rather than business one. Already I know the way to release the blocks I created through trying to make it “fit” rather than allowing it to be what it is meant to be.
And in order to do this, I need to really make the time and space for it. In recent months I have chosen to sit in bed and read, rather than staying up late watching TV, but I still struggle for time. There are things I have to do – work, cook, clean, look after Little Man etc – but equally there are things I can cut back on. And social media is one of these things.
For years now I have been saying I need to step away, but it seems so much like “social suicide” to do so, especially as a blogger. But you know what, blogging began long before the likes of Facebook and Twitter, and I do think a break from those will do me good. I spend so much time scrolling through them, time which could be spent creating something or actually reading someone else’s blog posts and commenting on them! So that’s what I’m going to do – I’m going to focus on the reading and writing and less on the sharing and tweeting, at least for a while. I want to find the “gifts within”, rather than relying on the outside world to feed my soul!
I’ve decided I want to be as symbolic as possible with this – today is 21st December and the Winter Solstice, in 3 months’ time we’ll reach 21st March and the Spring Equinox, or first day of Spring. That feels like a beautiful metaphor for this journey I wish to take – a hibernation of sorts, through the dark winter months, turning inward to find the source of my spark ready to burst forth with life once the Spring appears.
This morning I received a message from my sister-in-law, directing me to an article in the Guardian about Endometriosis. My initial response was caution, as so often this condition that has blighted my life since my early teens is so poorly represented in the media, if mentioned at all. But as I read through the article I was pleased to see that it was well-researched, quoting leaders in the field, and clearly expressed the challenges faced both by women suffering from it and the healthcare professionals fighting to find a cause and a cure.
This is why it is so important that awareness is raised through every means possible, so that those who are suffering (and those who are treating them) can access the best possible care, including an actual diagnosis for those who have never been properly diagnosed.
I’m no stranger to misdiagnosis – during my pregnancy my Hyperemesis was never officially diagnosed (or treated), and TJ’s Small Fibre Neuropathy was also misdiagnosed for several years as possible Carpal Tunnel. But I had always considered myself “lucky” to have been diagnosed with Endometriosis at 21, around 8 years after I first developed symptoms. A lot of this came from the fact that both my mother and maternal grandmother had suffered from it, and so we knew how important it was to fight for a diagnosis, especially through all the years of being told it was “normal” to be in pain.
But what the Guardian article clearly showed me this morning is that many of my other “diagnoses” since have most likely been a side effect of the Endometriosis all along (something I have long suspected but not had the courage to prove). Take, for instance, my IBS… I never had any trouble with my digestive system prior to my first laparoscopy in 2005, yet since that day I have struggled massively with pain and nausea that have consistently been attributed to IBS. Over the past 18 months I have been submitted to test after test including a CT scan, Barium Swallow, Endoscopy and Colonoscopy, all coming back clear. The latter, however, was somewhat problematic, due to my “very loopy” colon, and I cannot help but wonder whether some of this may be due to the adhesions which have previously “glued” my uterus to my bowel.
It seems I am far from alone in getting these “misdiagnoses”, as GPs and gynaecologists refuse to accept that the symptoms you’re presenting to them could possibly be connected to Endometriosis. Yet as the article itself states, “One woman in 10 of reproductive age has endometriosis, it is estimated, and yet often their primary care doctors do not know what it is and the specialists to whom they are sent are ill-informed.” Did you get that? The specialists that women are sent to are often ill-informed – no wonder getting treatment is so difficult!
I’ve said this before, but I’ll say it again – I consider myself “lucky” that my current GP has tried to find an Endometriosis Specialist rather than referring me to a general Gynaecologist. We didn’t have any luck in our search, but the fact is my GP is trying his hardest to get me the best possible care he can. To be believed and have that kind of support is incredible, though it should, of course, be standard!
I’ve seen enough Gynaecologists through the years to develop a certain amount of fear around appointments with them. Despite twice having surgery that has clearly shown Stage 3 Endometriosis, with adhesions attaching organs to each other, I have still had Gynaecologists suggest that “nausea is not ‘typical’ of Endometriosis” and “well, you’re not in too much pain, so bear with it”.
Again, I feel “lucky” that, for me, the Mirena coil actually stops my periods and so the agonising pain that accompanied me through my teen years and early twenties is a thing of the past. I no longer suffer from the pain so great that I cannot move, throw up and develop a raging fever to boot. When I say that labour and childbirth was a cinch compared to the pain I used to suffer every single month, hopefully that will give it some kind of context! But just because I don’t have that intense level of pain any more, doesn’t mean I don’t suffer.
I get “tugging” pains around my ovaries and “stabbing” pains in my rectum, so sharp that they take my breath away. I get mild “cramps” and the awful nausea that feels almost like motion sickness and reminds me of the horrific weeks and months I suffered with HG during pregnancy. And all of this happens completely at random, meaning I find myself suffering 2 if not 3 weeks out of every month. Add in the migraines and complete exhaustion from struggling to hold down a job, raise a son, and generally have a life, and the picture is grim.
Now here’s where I’m going to sound like a broken record – I feel “lucky” that I still have a job. I have faced discrimination in the workforce before and had to put my career plans on hold many times because of how ill I am. In fact, I often make myself more sick by trying to ignore the fact I am ill and carry on just like everybody else. But the truth is I do have a job, I do have a son that I am well enough to play with most days, and I do have some life left to enjoy. Not much, but some. Many women are not so “lucky”.
But here’s the thing – this shouldn’t be what it feels like to be “lucky”… Every woman with Endometriosis should be receiving the best possible specialist care to ensure that the condition does not rule or ruin their life. That isn’t luck… it should be standard. But until we break this idea that “women’s troubles” should just be tolerated and actually begin to see it as something that we need to find better treatment for, “luck” is what it comes down to.
If you’ve read my blog for a while, you will know that I have campaigned tirelessly over previous years to raise awareness of and better diagnosis and treatment for Hyperemesis, because every woman’s health and wellbeing is important. But the percentage of women suffering from Hyperemesis is far less than that of women with Endometriosis, where an estimated 1 in 10 women (or 1.6 million women in 2012 in the UK alone) have the condition. To put that into perspective, “The numbers are comparable to diabetes – and yet there is only a fraction of the awareness of the condition and help for those afflicted.”
You may wonder why I am mentioning Hyperemesis in a post about Endometriosis, but to me it is all the same battle – women are being drastically failed by our society and medical profession through lack of awareness and lack of funding for research, development and education. Until we accept that “women’s troubles” are just as important as other conditions such as diabetes, women will continue to suffer, no matter what condition it is that they are suffering from. And that is why it is important that Endometriosis is in the news today!
We all want peace, don’t we? By that I mean we want to feel at peace with ourselves and our lives rather than World Peace (although, I’m sure many of us would like that too!) We want to feel that quiet confidence in our lives, that the things we do are “just right” for us, that life is unfolding as it should, and that we are “on the right track”. At least, that is what I think of when I think of peace, a quiet knowing that life is okay, we’re okay, no matter what.
But as much as I strive for this sense of peace, I find it so difficult to catch hold of. It feels like something I am chasing, constantly, as I battle one difficulty after the next. And no matter how hard I try, that peace continues to elude me. Or at least it did, until recently…
This past year has been a major learning curve for me, and despite making huge leaps forward in many ways, I have felt myself dragged down by circumstance and a fear of the way the world looks at me. I’ve put far more stock in what has happened to me, rather than focusing on what is happening inside of me. And that has led me to chasing after things that do not make me happy, but instead make me jealous and bitter.
I could look at the blessings in my life – my little family, my home, the food on our table – and instead of seeing them for what they truly are, I focused on what they weren’t. I didn’t have the larger family I had dreamed of. Our home was not a place of refuge, but rather a jumble of boxes and piles of “stuff” we had to sort through. And the food on our table was hard won, a constant battle to balance healthy-eating with budget living.
And no matter how hard I tried to see the blessings, I just couldn’t feel them. Gratitude isn’t something you can force yourself to feel. No matter how many ways I went about thinking about it, I just couldn’t get my heart to embrace it.
Until I realised what the problem was – I wasn’t giving myself time. I needed time to stop everything and just focus on being. I needed to step away from all the pressures that wore me down and take some time out to simply be. And I definitely needed to cut down on the amount of time I spent looking at other people’s lives and yearning for things that were never meant to be for me.
The internet and social media can be a wonderful thing. It has brought me a lot of peace lately, but it can also be a dangerous trap to fall into, if you’re not careful (or should I say “mindful”) in how you use it. Not only does it bombard you with “edited” images of other people’s lives (by that I mean most people tend to show more of the “good” in their lives than the bad, giving us a skewed impression of what a “good life” looks like), but it also feeds us with ideas of all the things we need to do to be happy.
We need to have a perfectly pristine home. The food we cook should be ever more adventurous. We should be doing everything to make our kids’ childhoods perfect for them. And we definitely need to be “seen” in a certain light by not only our close friends and family, but also friends of friends and even perfect strangers we have only just met.
The latter is a lesson I am learning gradually. I put far too much stock into how others see me, I have done so for many years, but it has been brought into a whole new light of late. It is only recently, through quiet meditation and taking time out, that I have realised just why I have been so bothered by events over the past year – I am worried about what others must think of me, rather than realising that what others think of me really doesn’t matter, as long as I am happy with what I know to be true of myself.
Which brings me back to the good in the internet and social media. You see, the internet has given me access to things I may never have found without it, especially when it comes to the more “unusual” areas of my life. Most recently this has included online kundalini yoga classes (via youtube) that have brought a real peace into my life. I’ve tried yoga before, attending my first classes with my dad in my late teens, but I’ve never felt so empowered by it.
TJ and I started practising with this video just last week, and already I can feel the difference. I felt it from the very first moment we tried it. It wasn’t even that I was doing anything different, simply that I have found something I really enjoy which makes me take half an hour out of my day that is just for me. The benefit of that alone is immense, but combining it with the energising power of kundalini yoga leaves me feeling far more at peace and in control than I ever have. And the reality is that I’m not in control at all, I am simply riding the waves rather than trying (hopelessly) to tame them. And the relief of that is wonderful.
Suddenly I am aware of self-damaging behaviours – comparing myself (and my life) to others, constantly craving for more (or to achieve the next big thing), and feeling the need to justify my life (and my decisions). Those behaviours haven’t just disappeared, they are still there, but I am no longer oblivious to their effect on my well-being and through recognising this I am able to create change. Because I make time for it.
If there’s one thing I have learnt recently, it’s that no matter what you do, no matter how much you learn and how far you go in life, there is one thing that will never fail to assist you and that’s time. In a society where we are obsessed with squeezing every last drop of life out of every single second, it can feel counter-intuitive to stop and simply be. I know, I’ve been driven by both fear and ambition for far too long. But I also know, now, that taking that time is the most beautiful gift we can ever give to ourselves.
This time last year, my life was overtaken by Hyperemesis – and I wasn’t even pregnant!
News of the Duchess of Cambridge’s second pregnancy meant that there was an increased interest in the condition, and I raced down to London at extremely short notice for an interview on Good Morning Britain. On top of that, our book was nearing its publication date, so we were full steam ahead on last minute prep. And all of this around my usual work for Pregnancy Sickness Support (PSS).
I began to feel swamped, big time, and it only got worse. It is very difficult to describe the effect it all had on me, because quite frankly last Autumn almost broke me and it’s something I would like to forget in many ways. But the reality is, I don’t think I’ll ever stop caring about the cause and that means finding new ways of doing this.
The past few months have given me some space and time to figure out where I fit in the HG Community, and the truth is I’m not quite sure I do any more. But that doesn’t mean that I cannot support the cause, simply that I am no longer an active part of it.
Hyperemesis Gravidarum – The Definitive Guide will continue to help current sufferers and survivors, because the hours of work put into it are now paying off. And the posts on my blog, written over the past 4 years, still continue to get hits from web searches regarding Hyperemesis. Even when I am not actively writing about it, I am still able to spread the word. And that has been the biggest lesson for me this year – you don’t have to be on the front line to make a difference.
I also know that there are so many people out there with a wealth of skills and experiences that can be put to good use in improving the care, support and treatment of women with Hyperemesis, if only they knew how. So, with that in mind, I thought I’d put together a list of 5 ways you can make a difference.
1. If you feel like you can offer one-to-one peer support to another woman suffering from Hyperemesis, do register as a volunteer with PSS. This isn’t for everybody, I know – sometimes the trauma from your own pregnancy is too great to support another, and sometimes you’re so busy balancing work and home life that being available to support is just too much pressure. However, for those who do feel able to give support via phone, text or email, it can be a thoroughly rewarding role.
2. Share your experience, to raise awareness. I know this isn’t always easy, and it can often lead to difficult responses from friends and strangers alike who just don’t get it, but the best way to create change is to first create awareness of the need for change. Write about it on your blog, or contact a blogger you know and ask if you can write a guest post for them. Share a video on youtube, or write to your local newspaper and radio station asking if they might interview you. If you’re happy to talk to the national press, join a group set up for that – just be sure that you trust the journalist and/or editor not to put an unpleasant “spin” on the piece.
3. If you don’t feel comfortable writing or sharing your own story, why not share those that others have written. It’s so easy with so many social media platforms available at your fingertips… simply search for specific terms such as ‘Hyperemesis’, ‘HG’ and even ‘Morning Sickness’ (yes, I know it isn’t morning sickness, but you’d be amazed at how many articles you will find about Hyperemesis that only come up when using that search term). Remember hashtags are used on many platforms and you can also sign up for Google Alerts to get articles straight to your inbox. Spreading the word about the reality of HG, the work that is being done to improve women’s experiences, and ways in which people can get involved is so important to creating and maintaining that change.
4. Donate some money or raise funds to help keep services running. You can do this via direct debit monthly payments, one-off fundraising events such as a coffee morning or a sports challenge, selling items on eBay and setting a percentage to go to charity, or even whilst doing your weekly shop by using one of the many fundraising apps such as Give As You Live. And don’t forget that if you are a UK tax payer, you can register for Gift Aid, meaning that the charity can claim a further 25% at no cost to you!
5. And finally, why not look at the skills you have and think about how they could be used to help the cause. I am a firm believer that everybody has something to give, you just have to figure out what that may be. Are you super-organised? Why not offer to help organise events! An experienced PA? What about offering to set up a group calendar that can be used to keep everybody up-to-date and plan ahead for social media campaigns around key events! Talking of social media, are you forever glued to your phone? Why not give a few hours a week to support specific campaigns! Accountants could help with book-keeping, and nurses could raise awareness with colleagues. Chefs could offer ideas of quick, easy, low odour meals and those in retail could offer advice on corporate sponsorship. The way your skills can be used are only limited by your own imagination – so how do you think you could help?
I’m sure there are so many more ways in which you can get involved and make a difference! But I hope that these five provide a place to begin. Whether you can offer 5 hours a week or 5 days a year, your help will make a difference – nothing is too small!
I wrote earlier this week about how TJ and I support each other through our various health issues, and it really started me thinking. Whilst we are good at keeping each other going, no matter what, we are terrible at nurturing ourselves (physically and mentally).
I have known this for a long time, at some level, but it was showed to me very clearly Thursday afternoon when I visited a dietician for the very first time. After around 10 years of IBS-type symptoms, I’ve gradually discovered some major triggers, however recently it has felt like it doesn’t matter what I eat, I still get sick regularly. I’ve asked for help figuring this all out before, but never been referred, so it felt like a huge relief to finally see someone.
In reality however, the appointment simply reflected things I have always known – my diet is very limited and lacking spectacularly in various ways, which is having a direct impact on my energy levels. But more importantly, my biggest factor is most definitely stress rather than any particular food group, and therefore getting that under control is the key to eating better.
The problem is, how do you reduce your stress when life is throwing stressful situation after stressful situation your way? These past few years have been a constant stream of one new concern after another, and when I look back I can clearly see how the deterioration of my health directly corresponds to increasing levels of stress in my life.
The stress has come from three sources: a difficult work environment; TJ’s deteriorating health; and the financial implications of balancing the first two. Whilst I have made major changes to my work, reducing stress significantly, the impact that my previous job had still plays on my mind. I still have a fair amount of healing to do from that – there is no quick-fix to help recover from burnout, especially when your recovery included the stress of relocation and starting two new jobs.
And though we can make changes to our working life, the health issues we both face and the difficulty balancing a tight budget remain a source of real worry. It feels like we sometimes live life on a knife-edge, constantly ready to spring into battle at the first sign of trouble, meaning that the stress is there even when it isn’t!
When I look at all we have to cope with, I realise that it is no wonder I find myself with a pounding head, churning stomach, or abdominal cramps more days than not. It is also unsurprising that this then means I do not feel like eating, which in turn impacts on my energy levels. After a day at work, on my feet all day, I will often struggle to make more than a bowl of porridge for tea, having barely eaten at work as well. But eating like this only adds to the problem.
My appointment with the dietician may not have given me any answers I didn’t already really know, deep down. But it did make me realise how very much I have been neglecting my own well-being. I have been so busy caring for (and worrying about) others, both through work and at home, that I have forgotten to care for myself in a massive way. And that needs to change.
Which leads me to today. Today I am looking at how I can nurture myself. I have filled my kitchen cupboards with a variety of foods that will help me increase my protein intake, the aspect of my diet that was massively missing. And I am researching quick and easy meals we can make, as well as beginning to take vitamins to give that extra boost.
But this goes beyond the food I eat. It needs to include finding ways to deal with the stress in my life. The reality is that the stress is going to be there, no matter what, so rather than hoping for it to disappear, I need to find ways to relax amid the chaos. I started this earlier in the year with chanting, but I need more than the odd bit here and there… I need a daily routine of making time for myself, and for family.
TJ is with me on this – we are looking at ways to get out in nature, reduce our time glued to our phones or Netflix, and getting some quiet time in our day-to-day lives to reflect and recuperate. And I’ve decided to write about it here, on the blog, as a way of both holding myself accountable to actually doing this (rather than having the idea and never really doing anything about it) and seeing the impact it has on our lives.
It feels like a good time to do this, as we reach the end of Summer and feel Autumn fast approaching. I’ve always felt like September was a month of new beginnings, perhaps due to all those years when the new school term began at this time. And Autumn itself feels perfect for some self-reflection and nurturing as we surround ourselves with home comforts and close friends ready for the Winter months to come.
It’s always been my favourite season, and with Little Man’s birthday and our Wedding Anniversary added to Halloween, Guy Fawkes and Christmas, it feels like a truly magical and celebratory time too. I want to be well enough to enjoy all of this, rather than simply surviving it like I did last year, and that means finally putting my health and well-being first.
So that’s where I am and I’m excited for this journey ahead. I do hope you enjoy coming along with me.
It’s no secret around here that TJ and I have (more than) our fair share of health troubles. Between TJ’s Small Fibre Neuropathy and my combination of Endometriosis, Hypermobility and IBS, life can be challenging to say the least.
It would be hard enough if just one of us were struggling, but when we’re both sick it makes it very difficult to support each other through our darker days. And yet, support each other we do… and we do it well!
Some of this comes from the fact that we both know exactly what it is like to feel exhausted the entire time, to have our energy zapped by constant pain (and other symptoms), and to feel that life is entirely unfair at times, regardless of whether this is just our perception or we really are facing discrimination due to our illness.
But the rest of it simply comes from the fact that we love and care about each other, leading us to find ways through the tough times even when it feels completely hopeless.
The past few weeks have been particularly troubling for us, as TJ has had to come off yet another medication due to side effects that are simply unacceptable long-term. He is doing much better now he is off the medication, but it does mean we’re in even more uncertain waters in regards to management of his pain and the extra health issues the medication caused.
And amid all of this, my health has taken a drastic turn for the worse, with more bad days than good (I’m talking 3 day migraines, crippling nausea, indescribable exhaustion). Simply surviving has become a challenge, and at times like this it is more important than ever that TJ and I come together to support each other, rather than falling prey to the misery that chronic illness can bring.
But what does this actually mean? What is it that we do that makes such a difference to how we survive these challenges and even find joy in the midst of them? I’ve been thinking about this a lot lately and here’s what I’ve realised…
We talk. A lot. It sounds simple, doesn’t it, but it really does make all the difference. It doesn’t matter what we talk about, the most mundane conversations can lead to some really interesting insights into what is going on inside the other’s mind. I’m very open and honest and blurt out what I’m thinking and how I’m feeling without any prompting most of the time, but TJ finds it more difficult to express these things. When we make time for each other in this way, it all becomes easier.
I’ll admit that I find it rather annoying when he hassles me to get ready for bed as he’s tired, only to begin telling me all sorts of things once the light is turned out and I’m about to drift off to sleep, but those talks we have before sleep are often some of the most telling! And that’s another way that we support each other – we give each other time. No matter how tired we may be, how inconvenient the timing is, or how many jobs need doing, we make that time for the other person when it’s needed.
Heightened emotions mean that outbursts can come at the most inopportune and unexpected moments, especially if we’ve been holding them in all day to get through everything else we needed to. Knowing that the other person offers safety in which we can let go and show how fragile we’re really feeling makes a massive difference. We both understand what it’s like to lose it, and so we give each other grace for those moments when we’re acting irrationally or taking it out on the other person, when they are the person who least deserves our wrath.
We make compromises. Big ones. When you’re chronically ill, you have to learn to know and accept your own limitations. It means that so many of the things you always thought you could have are no longer attainable without having a serious impact on your health and well-being. If you know anyone with a chronic illness, chances are you’ve heard of The Spoon Theory. TJ and I are well versed in this, and we both know that right now in our lives we are over extending ourselves massively simply to get by day to day… we have to work to make ends meet, we have to find the energy to put food on the table, and we need to provide a safe and happy environment for Little Man. By the end of all that we are usually beat… but we still want more.
This is where we find that it is important to know which compromises we can live with and which we can’t. We can live with a certain amount of pain, but we cannot push ourselves so far beyond our limits that we become unable to function. That financial security we crave is nowhere near as important as being well enough to enjoy what we do have. The higher paid job is not worth the added stress that impacts on our lives. And the larger family we’d have loved is not possible when we are both so ill. We get that. All of it. So we focus on what is most important to us – family, health, and happiness.
We work together to find new ways of surviving this crazy life of ours – we research our options and make changes accordingly. When I tell TJ that I want to try changing my diet to check for yet another food trigger, he does not question it but supports my decision. And when he tells me he wants to try exercising in a different way, I say “let’s do it”. When you’re chronically ill, you’ll try anything to find a better balance in your life and avoid triggers, even when you know that your latest idea may not work at all. Having someone support you in this rather than dismissing it from the start can make all the difference.
And finally, when all else fails, we care for each other. When, despite our best efforts, we are struck down with such severe symptoms that we simply cannot do more than sit in bed and cry, we allow this to happen. We allow each other to scream, shout, and cry about the injustice of it all, how we’re feeling utterly defeated, and that things will never, ever get any better. We’ve learnt, through the years, that sometimes there isn’t an answer, that sometimes we cannot fix it for the other person, and that despite the heartache that brings us both, we have to accept it.
And so we cry with them, allowing the grief to surface, safe in the knowledge that together we can get through it. None of this takes away the pain, but it does make it far easier to bear. It’s a dance that we have learnt together and will continue to follow and adjust throughout our lives. Living with chronic illness is tough, supporting someone with a chronic illness even tougher at times, but together you can get through it.
Tell me, how do you support your loved ones when ill? And what support do you find helpful when you’re sick?
One year ago, an old friend of mine (Kelly Martin) self-published her first book. I met Kelly online whilst I was at uni, and I had seen how she began to find her voice when she set up a blog all those years ago. We lost touch for several years, so it was a truly lovely surprise to find her again just as she was preparing to publish her first book.
Photo Credit: Kelly Martin
When Everyone Shines But You is a wonderful book, which I actually bought a year ago when it was first released. But, as life has been so crazily busy for me these past 12 months, I am only just now finding the time to write about it. There is a major part of me that feels terribly guilty about the length of time it has taken… until I remember that Kelly’s book is all about losing these judgements we make of ourselves, forgetting about trying to “be like the rest”, and actually loving ourselves and our own journeys, no matter what form that takes.
As Kelly so beautifully says, “You are enough – exactly as you are! Right now”.
So, casting aside these feelings of guilt, let me share with you what I think to the book…
When Everyone Shines But You is a book that delves deep into our feelings of inadequacies, the thoughts we have that we aren’t good enough, and the comparisons we make with those who we think “have it all” whilst we still struggle onwards, never seeming to get anywhere. It doesn’t shy away from facing the darker, more explosive emotions we experience, such as rage and anger, rather it acknowledges them as a natural part of our journey in life:
You can and will embrace this rage, because it will not stop until you surrender into the rapids of this emotion. (Chapter 3)
This is one of the most refreshing things about this book – it allows you to have real emotions and reminds you that life isn’t good 100% of the time, we all have times when we get dragged down by the challenges we face, and that actually we don’t need to be good 100% of the time either:
You need not be a saint. You are not a saint. It’s okay not to be saintly. It’s okay not to be ‘good’. It’s okay not to be ‘bad’. It’s okay not to be perfect.
What you are, right now, in this moment is okay, more than okay, it’s who you are. (Chapter 19)
However, whilst it is a book that encourages you to accept who you are and how you are as perfectly okay, it still inspires you to aim for more. Kelly knows that the reason you have picked up this book is because you want to change, in some way, and she wants that change to happen for you too. But unlike so many “self-help” guides which suggest you practise techniques such as positive thinking, affirmations, and meditation to ‘change’ or ‘fix’ what we feel is wrong in our lives, Kelly invites us to embrace what is and allow change to happen naturally:
Don’t try to be present with your emotions and feelings in order to change them.
Being present allows them to simply be and sends a signal, that as you are, you are worthy of acceptance and care. The emotions over time dissolve on their own, without force or will… (Chapter 28)
When Everyone Shines But You is like a love letter to yourself, asking you to see who you are as a beautiful human being (warts and all) and that instead of needing to be something else, you are already perfect right now. This doesn’t mean that life is always rosy, and that you’re not going to want for more, or feel bad about yourself – that isn’t the point of the book. The message here is to realise that every single emotion you feel is showing you something, and when you can begin to embrace those emotions and hear what they are trying to tell you, change will come naturally. Because once you listen to your heart, you’ll find your own purpose in life rather than trying to live your life in accordance with others.
When I read the book, I could see the exact journey Kelly had taken whilst writing it. She writes from the heart, sharing the path she has taken and inviting us to walk with her. It won’t be for everyone – it’s not a book that tries to appeal to all, but rather a book that hopes to be honest and open. But for those who relate to the thoughts and emotions Kelly writes about, it will be a welcome breath of fresh air. There are no rigid steps to follow, no exercises that must be completed to ensure success, instead there are 39 short, easy to read chapters that feel like a letter from a good friend.
If you’d like to find out more about Kelly and her writing, do check out her blog at Kelly Martin Speaks. And if I’ve caught your attention and you’d like to buy a copy of the book for yourself, now is the time! As part of the book’s 1st birthday celebrations, Kelly is offering the Kindle version for 99p (it usually retails at £5.99). If you’d rather a hard copy of the book, or need an alternative eBook version, you can find the book at any of the retailers listed here.
Finally, I thought I’d leave you with some of my favourite quotes from the book. If you’ve read it, do share your favourite quotes with me too!
Disclaimer: Kelly is a friend of mine, and I purchased the book and wrote this review because I wanted to share it with you. All views are my own.
The past couple of weeks, I have been dealing with some really huge emotions. I’ve gone from being positive and excited about our new life (new home, new jobs etc) to utterly miserable about the things that we simply cannot do.
It started with sickness stopping us doing something as simple as a day trip to the beach (reminding me of how often our health keeps us from doing “normal” things) and continued with a really bad month with my Endometriosis (just in time for the ten year anniversary of my diagnosis) that made it even more obvious how much my health issues have prevented me from doing.
And then it was just a slippery slope (made worse by hormones, of course) into remembering how much I had looked forward to having and raising kids, only to have to stop after “just the one“. I cannot tell you just how much my heart and soul yearned for things to be different, for another baby to be in our future, for our “baby days” not to be over. So when the Endometriosis kicked off and made me realise that not only could I not have another child, I was also struggling to do all the things I desperately wanted to do with the family we already have, it all just got a bit too much.
Of course, it all became immeasurably easier once the hormones started to settle down (!) but there was still a sadness underneath it all that wouldn’t go away. Until yesterday…
I was busy looking up quotations to send in a little book to a friend who is going through a tough time of her own right now, and I came across this:
I can only describe my reaction to this as a kick in the gut. Within those two short sentences I found so much truth that it hit me right to my core. I realised that I had been desperately banging on closed doors, like a woman possessed, for far too long. And it was time to walk away…
When I look back on my life, particularly the past few years, I can see many moments in which I chose to keep fighting a losing battle. I chose to invest far too much of my precious (and limited) energy on trying to make something happen that I knew, deep in my heart, wasn’t right. I’m not saying that what I wanted was wrong, just that it wasn’t my journey to take. And whilst saying goodbye to our dreams is very often the hardest thing we can imagine, sometimes it is the best thing we can do.
I’ve known this, at some level, for a long time. I know that I have touched upon it, more and more over the years, each time coming closer to accepting it as one of life’s great lessons. I know this, because I can look back on my blog and see what I was thinking 3 months ago, a year ago, even five years ago. This is one of my favourite things about blogging – it gives you a tangible record of where you were at each point in your life, how you were feeling, and what you were thinking at those times.
When I look back over old posts, I can see recurring themes that crop up time and again. I see acceptance – accepting my limits, accepting the realities of life, and accepting myself. I see understanding – understanding the journey I’m on, the lessons I am learning, and how this impacts on how I live my life. And I see purpose – what I feel like I’m here to do, and how I achieve that.
However, I also see myself making the same mistakes, over and over again. I realise that this time last year I understood that it’s okay when life doesn’t turn out as planned, yet I still continue to try and make everything fit into an old ideal for my life. I see that at the beginning of this year I fully embraced living a life of “surrender” in which I allowed life to unfold as it did, without desperately trying to “fix” it, and yet I find myself forgetting how to do this. And I see that, yet again, I have been trying to ignore my body’s signals that something isn’t right and I need to make a change…
I have an appointment with my GP next Tuesday to discuss moving forward with dealing with the Endometriosis. It may well involve seeing a consultant to fight for something I have been thinking about for several years now but so terrified of pushing for. It certainly means walking away from a closed door. And in many ways, that scares the hell out of me, because once I walk away, there’s no turning back.
But the reality is that this door has been closed to me for a very long time. I’ve been banging on a closed door, holding myself in limbo, waiting for someone to find a way to unlock it and let me through. Even though that will never happen.
So today, I wanted to share with you the message that is carefully working its way into my heart and helping me to move forward… When one door closes, stop banging on it! Trust that whatever is behind it is not meant for you.
Have you heard of Insneezia? No? Well, neither had I until a couple of weeks ago when I received an email with lots of information about it from Boots UK.
At first, I thought it sounded gimmicky, however the stats that they provided about the loss of sleep due to hayfever symptoms and the knock-on effects of this really caught my eye.
Isn’t that interesting? It actually inspired me enough to try my hand at making my very first infographic – pretty cool, huh?
But what really caught my eye was the knock-on effects that a bad night’s sleep can cause. TJ and I both find that we become immensely tired during the summer months, and we’ve never really understood why.
Neither of us have what we’d typically consider hayfever symptoms (itchy eyes and a runny nose) but we do both clearly suffer from it. We get sore throats, headaches, painful sinuses, and sometimes just feel like we have a cold the entire length of the summer – it must be hayfever, right?
So it’s no wonder we struggle to get a good night’s sleep and feel extra tired (and crabby) the following day! Insneezia may have sounded like a gimmicky name when I first saw it, but I can totally relate to all the symptoms.
Which is why we were super excited to try Boots’ new Nasal Barrier Spray, to see if it might give us a bit of a break from such irritating symptoms. Antihistamines alone didn’t seem to be cutting it, so why not give it a try?
I was a little bit concerned, before it arrived, as to whether I’d be able to use it. I’ve suffered badly from rebound congestion in the past and didn’t want this new barrier spray to set this off. I needn’t have worried, however, as the Nasal Barrier Spray is actually a very gentle powder, which simply creates a barrier against pollen (and other airbourne allergens).
It is made of a mixture of cellulose and peppermint, which is a very pleasant scent to spray up your nose! It feels so refreshing and it’s really quite amusing when you happen to sneeze half an hour later and get yet another whiff of peppermint!
That’s not to say that the spray itself makes you sneeze, it’s actually really easy and gentle to use. You simply clear your nose, and then apply one spray to each nostril. It is advised that you do this at least 3 times daily, to maintain the best possible protection, however you can use it as often as needed.
The spray is suitable for pregnant and breastfeeding women, as well as children over the age of 18 months, so it really is a great addition to your family’s medicine cabinet. Little Man is 3 and a half, and he has had no problem using the spray and even finds it all rather amusing.
We’ve been using the spray as a family for just over a week now, and I have to say it has been really quite effective. It took a few days for us to notice the difference, and it’s been hard to compare how our night-time sleep has been affected (more due to Little Man having a nightmare or two last week than hayfever related issues) but I have definitely noticed a distinct difference in how my head and sinuses feel.
I’d say, though, that the biggest change I noticed was when I forgot to take my antihistamine and the spray whilst working this weekend. Within a couple of days I have begun to suffer from a terrible headache, snotty nose, and disturbed sleep, so I shall certainly be getting back on track with them both this week.
If you’d like to try the Nasal Barrier Spray for yourself, you can do by shopping online or heading into your local Boots store. It is currently retailing at £8.99 per 800mg, which is roughly 200 sprays according to the website. Even better, it is currently part of a “buy one, get one half price” offer on selected hayfever and allergy relief, so you could stock up while that lasts.
Disclaimer: I was provided a free sample of the Nasal Barrier Spray, along with details about Insneezia, in return for this review. However all thoughts and opinions are my own.
Ten years ago, this month, I was diagnosed with Endometriosis. I was relieved to finally have a diagnosis, and was told how “lucky” I was to be diagnosed at such a young age (I was 21). Whilst I appreciated the sentiment, I didn’t feel very lucky.
I had been suffering from the most severe abdominal cramps ever since my periods first started in my early teens, and had spent several years dealing with a cycle that could be as short as 2-3 weeks at times. When you feel physically sick and are doubled over in pain during your period, having them come so frequently together (not to mention so unpredictably) can really make your life hell.
Getting a diagnosis didn’t really change anything, other than giving me a name for what I was dealing with. I’d like to say that getting the diagnosis meant that I would no longer have to deal with doctors and gynaecologists who didn’t believe how much it was affecting my life, but sadly that wasn’t always the case! But, still, I had a name for what was happening to me – at least I didn’t have to doubt myself any more…
The past ten years have been hard. I’ve tried pretty much every treatment option available to me, and have unfortunately reacted badly to most. My last appointment with a gynaecologist, at the beginning of this year, set out my options pretty clearly:
Continue as I am, with the Mirena coil, and see how long I can cope with the symptoms
Take Nafarelin, again, to try and keep symptoms at bay as long as possible
Unfortunately, none of these are great. The Mirena, whilst stopping my periods, does not seem to stop the pain. And as I only came off my last 6 months’ of Nafarelin in February, it just feels too soon to try that again. As for surgery, well my last two laparoscopies were pretty extensive and left me feeling worse than before (my first one set off my IBS, and I ended up with an infection after the second). When I look at the length of relief I get from any of these options, it really does feel rather hopeless.
According to my gynaecologist (not that I ever see the same one twice!) the plan is to get me through to my 40s and then consider removing my ovaries. I’ve always known this was a possibility as my mum had a hysterectomy at 36 and my Grandma had one at 40 (yes, Endometriosis, like Hyperemesis, seems to run in my family!) The problem with this is that I am only 31… I can’t imagine getting through another 10 years like this.
This past week I have felt awful. Admittedly, I have had a virus that has totally floored me, but the worst part is that just as I was recovering from that I have been pulled back down by cramps, nausea, intense bloating, indigestion, the lot. I know it is the Endo, because the symptoms are so typical for me… I was super emotional last weekend in the run-up to it, my pelvis and tailbone have been killing me, and I’ve been dreaming about a combination of babies and ovary pain – you can’t get more hormonal than that!
And I realise that this month the symptoms are worse than last month. And last month the symptoms were worse than the month before. And suddenly I realise I am heading for yet another slide into the abyss that is Endo at its cruellest.
I’m lucky, in that I have support. My mum “gets it” and I have so many online friends who have walked this path before me (and with me). But still, it can feel so lonely sometimes. When your body keeps failing, keeps holding you back, keeps you from enjoying time with your family, keeps you from reaching your dreams, keeps you from living… well, that just plain sucks.
It’s no wonder I’ve been miserable this past week. I thought it was because I was sick. But really, it’s the reality of it all sinking in. It’s realising that, yes I had a virus, but nobody else in the family was so incredibly and completely wiped out by it and the only reason I was is because my body is already working overtime to deal with my crazy hormones and the pain that comes with them.
So now I have some thinking to do. What route do I take? Do I do nothing, or do I go down the medical route? Do I try the gynaecologist’s suggestion of taking Nafarelin constantly, to see if that helps, or is that a bit pointless? According to her, I can take it up to 2 years as long as I take HRT and then longer than 2 years if necessary, only I’d have to start having bone scans after that. But if I do that, how is that any different to having my ovaries removed? Surely pumping my body full of more chemicals just to avoid that surgery for a few more years is a bit mad?
But am I really ready to push for something more permanent? I think I may be getting there, as this week it has really hit me that we won’t be having any more babies (hence my love letter to myself about my journey towards motherhood). The only reason I can think of for those emotions hitting me so suddenly is that deep down, I know I have some big decisions to make. And whilst I know we decided long ago that another pregnancy isn’t an option for us, opting to take that away completely just seems so immense!
So, yeah… this month marks 10 years since I was first diagnosed with Endometriosis. Ten years of having a name for this condition that totally runs my life at times. Do I want to give it another ten years, or is it time to say “enough”?
I don’t know about you, but sometimes I feel like life is whizzing by and I am missing so much of it because I am so caught up in all the things I think I need to do. To be fair, some of those things are necessities – I do need to work in order to pay the bills, I need to cook in order to feed my family, and I need to do the laundry so that we have clothes to wear!! But sometimes I mix these necessities in with things that could wait, and that’s when I miss out on so much.
These past few weeks have really highlighted how very true this is. Life is incredibly crazy right now – we just moved house, I’ve just started two new jobs, Little Man is adapting to a new nursery, TJ is getting used to a longer commute each day, and we’re all adjusting to the fact I no longer work from home. Needless to say, life is just a little bit messy because of all the changes to our routine. We haven’t yet found our new rhythm and it has thrown us all off kilter.
But instead of giving myself some grace and putting the “to do” list on hold, I have found myself desperate to get through it. I see the boxes we still need to unpack, the cupboards that still need sorting, the pictures I want to get up on the wall, the plants that need planting, and it all just feels utterly overwhelming. Again, I come back to weeding out the things that could (and probably should) wait from those that actually need doing. I mean, we have everything we need to cook dinner, dress for work, and go about our daily business, surely the rest can wait!
And it can, of course it can. But when I’m stressed I find that I cling to things I think I can “achieve” (such as a more “perfect” house) rather than simply living intentionally. I focus more on the way things look than the way they feel. What does it matter if my house is a mess, if I am able to spend time with my family? Who cares if the bookcases are filled with clothes instead of books, when it means I have time to go out and enjoy the sunshine with my boys rather than emptying boxes and rearranging everything? By focusing on how unfinished my house is, how far from the ideal I want for it, I am missing out on the fact that we are here, we are together, and life is good.
So that’s what I am trying to do. It is hard, I feel bad about the state of my house, that it should be sorted by now. But though it is hard, it is so worth it. Sitting and watching tv whilst cuddling Little Man, rather than asking him to sit quietly whilst I unpack is a much better way of living, don’t you think?
Last year I wrote a post about looking for simple things in life, what I called Joy in the Everyday Moment, and I feel the need to do this again. I want to consciously and intentionally look for those little things which mean the most, to ensure I do not get pulled down by all the coulds and shoulds that I allow to overtake my life when I do not life with intention.
It’s no secret that life is pretty crazy here at The Patch. This year has seen us face redundancy and relocation, and whilst things are slowly beginning to settle down it is still far from peaceful. I’m currently balancing two new jobs, whilst building up my blog again (which is fun, but takes a lot of time). TJ is dealing with lots of changes at work, which is stressful enough without the added concerns of his own health. And Little Man is trying to adapt to life in a new city, which isn’t all that easy for a 3 year old to fully understand.
So with all this going on in our lives, I find that there is constant chatter in the back of my mind. I think at a mile a minute normally anyway, but with so much to think about on a daily basis right now it has become much more complicated. At the beginning of the year I set out some goals for the year. These included being more mindful, worrying less, and living more purposefully. Whilst on the surface it may seem like I am getting there, my internal dialogue is still constantly worrying about what the future holds and missing what is happening right now. I am, in essence, losing myself to the chaos around me, rather than finding a centre of peace within it.
And I want to change that. I want to embrace something which becomes a natural part of my day, setting me up for whatever happens by giving me some sense of internal peace. I have tried it before, making a promise to myself to pray, meditate or try yoga everyday, but it just hasn’t ever worked out. I get distracted, or I feel sick, or I just don’t feel I have the time, and it all falls by the wayside. Until now…
Whilst I was packing for our move, I tried listening to various radio stations, albums, podcasts etc but found I simply couldn’t focus on what I was listening to and focus on packing at the same time. It became more stressful than helpful. Until I discovered this version of Gayatri Mantra on youtube.
I don’t know how to describe how perfect it was… over 2 hours of music and chanting that was so easy to learn and sing along to. Focusing on the repetition of the words alone, even though I had no idea what they meant, was so therapeutic. I could think about what I was packing whilst chanting, because the pattern meant that it became easier to sing each time. I want to say that it meant I didn’t have to focus too much on the words, and that is true, but there was some thought involved because what essentially happened was that the mindless chatter and panicked thoughts that usually ran through the back of my mind began to disappear.
I’m not sure this is exactly how most people use mantras, but it is certainly working for me. Over the past few days I have listened to the Gayatri Mantra again whilst sorting out the bedroom, getting reader for work, pottering around the house… and the more I do it the more I find myself singing without the music too. I’ll be walking to work and it suddenly pops into my head, or I’ll be preparing lunch and the words just slip out. The combination of music and words seems to work so well for me, and I am beginning to really love the way that it quietens the fearful or chaotic thoughts that run through my head, helping me to find a calm centre from which to approach my day.
The weirdest thing is, I’d have never thought that chanting would be my thing! TJ first shared a few with me this time last year when he was learning some as part of his Shamanic Practitioner course. One of them was another of Deva Premal‘s tracks, and when he first played it to me I could feel the power within it, and I did enjoy joining in with him once in a while. But I never really made the time for it. Last year was, in very different ways, equally as chaotic as this year has been and I just don’t think I was in the best place to appreciate what it could offer me. I felt chanting was something I had no time for, especially as I read Eat. Pray. Love last summer and saw the dedication that was involved by the author during her time in India. Little did I know that even the smallest amount of time spent in this way would make a massive difference.
But now I know, and I want to embrace this wholeheartedly. I’ve decided that I want to make time for chanting every single day, even if it is only for 10 minutes in the morning as I jump in the shower. I’m hoping that, in time, I will find a way of making some dedicated space in my days for really focusing on the mantra, feeling the music flow through me and understanding what the words actually mean. But I know that if I set myself too great an expectation I will only give up. So for now I’m going to just try and make sure it is a daily activity, no matter how small.
I feel a particular affinity to the Gayatri Mantra, so I am going to try and stick with that for now, to really try and understand its meaning before moving on to another one. I’ll let you know how it goes. And if you chant, please do let me know what your favourite it, how you integrate it into your day, and what it means to you – I’d love to hear about it!
Today is International Hyperemesis Gravidarum (HG) Awareness Day, an event which will always hold a very special place in my heart. I may not write much about Hyperemesis any more, but it is something I will never forget. Over the past 3 years I have seen awareness of the condition grow, leading to greater support and better care for families affected by it, in a way that I could never have imagined when suffering from Hyperemesis myself in 2011. And that’s all because individual voices have come together to enact greater change than any single voice could.
Now don’t get me wrong, individuals can make a huge amount of difference. I’ve seen it happen so many times within the HG world: the woman who dedicates vast amounts of time to supporting other women who are suffering through a hell that only she can understand; the doctor who goes above and beyond to ensure that a patient in their care receives the best possible treatment; the team of midwives who agree to meet and listen to a woman share what HG was like for her and how to best support other women like her; and the partners, family and friends of a sufferer who rally around her to make every day as easy as possible, and attend medical appointments to help advocate for her when she is unable to do so herself. These are all really important ways in which individuals make a massive difference to those around them. And we should never underestimate how much change one person can make! But it is through working together that lasting change on a large scale is achieved.
The changes I have seen over the past three years have come about because many, many individuals have come together for a common cause. Multiple charities have formed working relationships which enable them to achieve more together than they ever could alone. The international collaboration of the two big HG Charities, Pregnancy Sickness Support (PSS) here in the UK and The HER Foundation in the US, sparked the idea for an International Hyperemesis Gravidarum Awareness Day. And a recent collaboration between PSS and the British Pregnancy Advisory Service (BPAS) enabled the production of a report on the number of women feeling like they have no choice but to terminate a much wanted pregnancy due to Hyperemesis. This report led to further media coverage, including mentions on the front page of national newspapers and an interview on Women’s Hour, something which may not have happened without working together.
Even within the individual charities themselves, there are great developments occurring, and this is all because of the sheer number of people supporting them. Take PSS, for example: the active forum is only thriving because of the many members supporting each other through the opportunity offered to them on there; the Support Network only works because of the amount of dedicated volunteers who offer their time and support to those in need (it also relies on many others spreading the word about its existence, as well as funding for staff to coordinate it and further developments); and the research undertaken often relies on the various voices of those who have suffered coming forward and sharing their stories.
This time last year my life was pretty much overtaken by the cause – I was working vast amount of hours every week as the Volunteer Coordinator for PSS and also working on final edits of Hyperemesis Gravidarum: The Definitive Guide. I lived in a world that was full of equal amounts of desperation from those currently suffering and passion for change from those who had survived HG. And despite personally dedicating huge amounts of time and energy to the cause (too much, in retrospect, for a healthy work/life balance), I never once lost sight of the fact that it was the multitude of individual voices that were making the vast changes I was lucky enough to see happening right before my eyes.
My life is very different now to what it was this time last year. 12 months ago I was burning out, fast. Despite the fact that there were many, many people working together to enact change there just weren’t enough of us to make change on the scale that we wanted to. It is a battle that so many causes face, and it is one that is only won through people coming together so that their individual voices are amplified by those singing the same tune. The greatest lesson that I took from my time with PSS was this – one person can change the world, but only through working with others.
So today I am asking you to think about what is important to you. What do you feel passionate about and what do you wish you could change in the world? Please don’t ever think that you cannot make a difference, because you can. Don’t compare yourself to others and feel that you aren’t strong enough or wise enough or talented enough – everyone has something that they can give that is unique to them and will, when given the opportunity, make the world of difference. Whether you can give 10 hours a week or just the odd hour here or there, whether you have specific skills, knowledge and experience or are simply passionate about the cause, and whether you feel confident approaching others or terrified of making that first call, please do consider taking that leap and contacting a group or organisation who need your support and will welcome whatever you can give.
Together we can achieve great things… and it all begins with you!
This past weekend has been such a wild mixture of emotions, I still feel like I am reeling a little bit. It’s probably unfair to say it is just this weekend that has been this way, because in reality the entire year has been full of magnificent highs and intense lows. But it all seems to have come to a head over the past few days.
Let’s start with Friday. I had been waiting all week to hear whether I had been successful in my latest interview. I had felt like the interview had gone well, and was more excited about this role than any of the others I had gone for. But even so, having been turned down three times before because of being “overqualified”, I wasn’t ready to celebrate yet. In fact, I had given up on hope that I would hear that week, and was focusing on the job at hand – i.e. packing!
Then, almost as soon as I stopped thinking about it, I received a call offering me the job. I start on Friday 1st May, less than a week after we relocate to our new house. The news of this job coming just 2 weeks after the news that we could finally set a moving date was pretty exciting. After months of uncertainty, of thinking we were getting somewhere and then being held back for one reason or another, we were finally on the move. Quite literally.
So that’s the magnificent high for this weekend. We’re just 2 weeks off our move, and I have a new job. And it is a job I just know I am going to love. I couldn’t be happier…
Only the process of packing up ready to move makes me face the reality that life is moving forwards for us. And in some ways that is hard, because it means letting go of the very last threads of a dream we once thought was our future.
When we first moved here, way back in 2010, we were yet to be married and we were childless. We weren’t even 100% sure I could have children, but we were hopeful. Hyperemesis was a complete unknown for us, and as for Small Fibre Neuropathy, well we couldn’t ever have foreseen that. I remember thinking that the second bedroom in this house was the perfect size for two children. I wanted two, at least, if not three or four kids if I was really honest with myself. And this seemed like the perfect home to begin that journey.
Don’t get me wrong, I am overjoyed that we have Little Man. We are incredibly blessed by him and I know that things could have turned out so differently. I completely see all the benefits of having an only child, especially now that TJ is sick. But it isn’t the dream that I held for so long.
I don’t remember a time when I wasn’t broody. I think it kicked in pretty early on, and by the time my mum became a childminder I knew I wanted children in my life. And despite being adamant throughout my entire pregnancy that I could never do that again, there was always the doubt that said, “you won’t be happy with just one child”. I wouldn’t go as far as to say I am not happy, because I feel so incredibly lucky to have this beautiful bond with Little Man, but I do know that there will always be this part of me that grieves for the fact that we never got to expand our family.
And that grief was thrown in my face this weekend as I went up in the loft and brought down all of Little Man’s baby clothes. His 0-3 month clothes (which he outgrew in about a month – he was a big baby!) were stored in the carrycot to his pram (which he also outgrew incredibly quickly). I have yet to go through all the bags, but I believe we have clothes right up until the age of 1 year in there, and it reminds me so much of those beautiful early days. They were marred by breastfeeding issues, sleep deprivation, and depression, but they were also the most beautiful moments that finally made me the mother I had always dreamed of being.
This dichotomy of emotions – joy and sadness, gratitude and grief – is what I am also feeling right now. I am overwhelmed by the thought of finally getting rid of items from those early days, items I stored away “just in case” we ever had another baby in our lives. And yet I am also relieved that those early days are long gone. No more will we face the crazy upheaval of newborn life, no more will we forget what a good night’s sleep feels like, and no more will we need to work our entire lives around the needs of one tiny (and amazing) person. And there’s a lot of relief in that…
When I think of moving to the new house, I feel a renewed sense of excitement. We’ll be able to do all the things we wanted to do when we moved to this house but were not able to do through time or financial constraints. I’ll finally be able to paint the welsh dresser, make a patchwork quilt, and generally make our house into a warm and inviting home. We’ll be able to have people over to stay because, although we will need to look after the needs of ourselves (and especially Little Man) first, we will not be stretched across too many needs and commitments.
My life will never again be the half-crazed rush of trying to juggle far too many balls, instead there will be family nearby, communities to explore, and a far better work/life balance. There will be time for quiet meditation, reflections on the beauty in our life, and rebuilding the core strength which gets us through the hard times. And for that I am truly grateful.
It doesn’t take away the sadness and grief for dreams that once were but will never be. I think that will always be a part of who I am. But instead of trying to be just one thing, I am trying to embrace the duality of these experiences and emotions and forge a new way forward which allows them both space in my heart. That maternal instinct, that so desperately wanted a larger family, can find a new way of providing love and support to others, and all because of the opportunities provided by fully accepting the gift of time and energy this new way of life is enabling.
Here’s to life, whatever it may bring!
I’m linking up again with Share The Joy over at Bod For Tea, as this post has brought me both joy in the memories and in the realisation of all we have together as a family!
Living with chronic illness is hard on all members of the family.
For TJ it means living with awful pain day in and day out, with new symptoms developing whilst we wait for even more tests and referrals. And for me it means watching the man I love reduced to a shadow of his former self, unable to do anything but stand by in support.
But for Little Man it is simply confusing… he knows daddy is poorly and sad, but he doesn’t quite know what to do about it. He is only 3, after all, how can he possibly understand what is going on?
So, with this on my mind this morning, I decided to write something for him. As with most of my poems, once I got started the words began to flow right out of me and I was able to read it to both TJ and Little Man over breakfast.
It made both TJ and myself rather emotional and Little Man listened intently. And I realised it was something that needed to be shared – after all, how many other families may feel exactly like we do?
TJ gave me his blessing to share it (I always check before I post anything personal on here) and so here it is:
My daddy is poorly
My daddy is poorly he hurts every day, he has lots of medicine to take pain away.
Sometimes he’s unhappy, sometimes he is sad, sometimes he’s frustrated and sometimes he’s mad.
He tells me he’s okay, that things are alright. He plays with me each day, reads books every night.
But I know he’s hurting and that makes me sad, I can’t make him better and that makes me mad.
Sometimes I am naughty, sometimes I will cry, sometimes I get angry and sometimes I sigh.
And then daddy hugs me and holds me so tight, he kisses me gently and says we’re alright.
My daddy is poorly, he hurts everyday, but when we’re together it all goes away
It’s been a very, very long time since I sat down and wrote a poem. Years, maybe. Which is odd, really, when I consider how I used to scribble notes on anything and everything I could find whenever inspiration struck (paper napkins, anyone?)
It’s not that I haven’t wanted to write, more that my heart just hasn’t been in the right place to open up and feel what it needed to. I guess that denying emotions in order to try and survive is not only bad for our health, but also bad for our creativity!!
If you’ve been reading my blog for a while you’ll know that I don’t usually have any problems expressing myself, but poetry takes that expression to a whole new level. It seeks out the essence of life and gives it a life of its own. Poetry is so powerful and I have truly missed being a part of such a creative expression.
I used to say that if the first few lines didn’t just pop into my head with ease, there was no point in writing it down. That’s not to say that writing poetry doesn’t require thought and persistence to hone what you are trying to say into a poem that touches the heart of another, because it does! But if it doesn’t flow freely then I don’t think it is the right topic for you to be writing about in that moment. If you don’t feel it, how do you expect others to?
The poem I am sharing today came to me as I was making a drink in the kitchen. By the time I had made it to my notebook, the idea had changed form, but it was still there. As I wrote, it continued to change form and I didn’t really know where I was going with it. But it felt good to write, and I am really happy with the end result.
Yet Still We Stand
On the brink of destruction, the edge of despair Dreams shattered and stolen, like nobody cares Promises broken, in the blink of an eye Leaving nothing but darkness: no light, no guide And yet, still we stand.
The dreams of the past are but shadows once lost We cling tight, out of fear, we question the cost Battered and torn, we don’t know where to turn Our hearts are left wanting, afraid they may burn And yet, still we stand.
A moment in silence, together, alone Our hearts thumping deeper, we’re shook to the bone But out of that moment, a glimmer shakes free The darkest of moments sometimes make us see And so, we stand.
Broken and torn, there is nowhere to hide Yet there’s nothing to hide from, that part of us died A new way – a true way – of living is born Out of the habits and masks we once wore And now, we stand.
Rebuilding our hearts, remodelling our lives Sometimes it’s like we can’t believe our own eyes But out of the brink of destruction we came Ready to embrace our lives once again And we begin to dance…
Today’s post has been posted in the “Share the Joy” Linky hosted by Bod For Tea. I love this linky, if you haven’t found it already, take a look! I’m sharing this post, because rediscovering my love of poetry has really brought me a lot of joy this week!
So, remember how I wrote that my word for 2015 would be “Surrender”? How little I knew at that time how much that word would come to mean…
We’re not even out of January yet and already I have been made redundant, attended a job interview, and made the decision to relocate (and found a house that will hopefully be ours!) Talk about a crazy month!!
I’ve not been able to talk about all of this while it was happening, because there was a period of time between finding out about the proposed redundancy and the confirmation of this (which arrived yesterday). And it’s been pretty tough not being able to talk about it, not because of the changes themselves, but because of the changes within me that this has all evoked.
2014 was a year that almost broke me. Between TJ’s rapidly deteriorating health, the multiple GP and hospital appointments that ensued, an incredibly challenging job, final edits on the book and its subsequent launch, a massive drop in Little Man’s childcare (meaning less time than ever to fit everything into my already hectic days!) and my own very physical reactions to stress, it is no wonder I ended the year close to a breakdown and feeling like Christmas was just an inconvenience I could have done without.
But it was upon hitting absolute rock bottom that I made the decision to “let go” and trust that everything would unfold in its own way. Instead of fighting to try and control life, I decided to go with the flow, and I couldn’t have made that decision at a better moment. Were I still in the mindset that I was in 2014, this first month of the New Year would have been the final push that shattered me. Instead, it has been a defining moment in teaching me to ride the waves and hopefully float, rather than thrashing around and choking myself in the process.
Don’t get me wrong – life is stressful. Nobody wants to face an uncertain future. Every day I find myself thinking, “I’ll feel better when… [insert “I get a new job”, “we’ve signed a new lease”, “we’re all settled into our new home” etc]”. But this is the wrong kind of thinking. I can’t wait for those things to happen to feel better, I need to feel okay now.
It’s a pretty monumental shift in perception, and it is being helped along by an awful lot of prayer, reading, and support from friends and family. But it is slowly becoming more of a natural reaction and less of something I need to force myself to think.
I’m still sad, of course, this kind of thinking doesn’t take away that feeling. It just makes it easier to live with. Things have happened which I never imagined would happen, some of which I do not understand at all. But instead of letting the concern about things I cannot know consume me, I am choosing to let them go. One day I may know the answers, but if I don’t it doesn’t matter – I can accept that now.
So that’s where I’m at… a total and complete change. But as they say, when one door closes, another will open. I’m choosing to look at this as a positive, trusting that this is just one more step along the path I am to take in life, even if I cannot yet see what the next step is.
What I do know, though, is that it has deeply impacted the direction in which I wish to take my blog now, after several years of floundering around with no real direction at all. And I’m excited about that, even though it includes facing something I have feared doing for quite a long time. But what did I say 2015 was about, surrendering? Well maybe that also means surrendering to what happens and simply following my heart…
Will you join me?
This post has been submitted to the All About You Linky hosted by Mama and More
Today I really want to share a fantastic, free resource we have found for both entertaining and relaxing our highly energetic and inquisitive 3 year old! Welcome to Cosmic Kids…
Cosmic Kids is “your place for yoga, stories and fun”. There are so many ways in which the team at Cosmic Kids are making yoga accessible and fun for kids (both at home and at school), but I want to tell you specifically about the yoga adventures on youtube.
All of the videos on youtube are completely free to view, and are an excellent way to get your kids interacting and learning whilst having fun and doing some yoga. Jaime (pictured above) takes you on a magical journey through a story, whilst integrating yoga postures throughout. So, for example, in their latest adventures (Star Wars Episode 4), downward facing dog becomes the posture for R2D2… this is one of Little Man’s favourites!
Admittedly, Little Man doesn’t follow the entire adventure… he wanders off and does his own thing lots of times, but that’s okay! He’s having fun, exploring new ways of doing things, and comes back to join in with the adventure as and when a part of the story interests him. I love the freedom that the videos give us to let him take part without any kind of pressure to keep up with the story all the way through.
This was certainly not part of the story today, but he had fun and it enabled him to test his strength and agility in his own time (rather than simply running around in a circle and making himself dizzy which is what he often does when he has excess energy to burn!)
No matter how often he gets distracted and goes to do his own thing, he always comes back to the story over and over again and loves trying to do what Jaime is doing. Sometimes that is just repeating a noise she has made or telling me what she is doing. Sometimes it is having a go at the posture, with a little help from mama. And sometimes he just gets it all by himself and gets a thrill from being able to follow along all on his own…
As you can see, Little Man loves having a go and is more than happy to follow along with minimal input from mummy and daddy. That’s not to say that mummy and daddy aren’t invited to join in from time to time, and when we do join in it is just as much fun for us! But it is definitely something that even a 3 year old can manage to follow on their own.
And this, I think, is testament to how wonderfully inclusive the videos are. Jaime and the team at Cosmic Kids seem to totally understand how to get kids involved and using their imaginations and it’s so wonderful to find such a resource available so freely. Little Man adores using his “cosminoculars” at the beginning of adventures…
He also absolutely adores counting down from 3 to 1 and then saying “Namaste” at the beginning and end of an adventure. I wish I had a video of it, but alas my attempts at videoing him this morning didn’t go so well. However if you’d like to see some other kids in action, why not check out the Cosmic Kids’ Yoga Heroes video of other children enjoying the adventures just as much as Little Man does.
As you can see from that video, Cosmic Kids is enjoyed by children of all ages, and their families!! And it’s no wonder, really, when you consider the amazing quality these videos are. They are a fantastic introduction to yoga for children, and also a really good resource for learning mindfulness, something which I know that we as a family want to integrate into our lives more but are often at a loss of how to do so ourselves, let alone for a 3 year old!
Cosmic Kids don’t only produce adventures, you see. Oh no, they also have beautiful videos called “Zen Den” which are perfect for quietening things down and taking some time to reflect and rest. Little Man is more than happy to sit cross legged on the floor, especially as these are much shorter in length and involve enough visual and audio input to keep him concentrating on what is happening on the screen.
I love his little version of sitting cross-legged, it makes my heart melt so much!
Back to the matter at hand!
Cosmic Kids have a wealth of resources available on their website, it’s not just about the youtube videos. There are posters and posture guides to download as well as class plans (did you know that children take part in Cosmic Kids Yoga Adventures in schools? How awesome is that?) There are even a couple of DVDs you can buy, which help the team to cover the costs of producing the videos.
Honestly, I cannot tell you how much we love Cosmic Kids here at The Patch. We have been enjoying the Adventures since summer 2014 and yet I have only just discovered their Facebook and Twitter feeds as well as the instagram hashtag (#cosmickidsyoga), so I shall be exploring those later today.
Will you join me?
We are sharing how much we love Cosmic Kids purely because we love Cosmic Kids. We were not approached by anyone on the team, nor was any incentive given. I contacted Jaime this morning to request the use of their images, but that is the only contact we have had. We hope this honest review makes you even more interested in checking them out!
After a lot of reflection over the past few weeks, I have come to the conclusion that a lot of things need to change in my life. Some of them internal, some of them external. Some are changes I can personally make, and some are changes that rely on things outside of my control.
With that in mind I wanted to focus on setting achievable goals for the months ahead, goals which are not only quantifiable but also have a real impact on my life in a positive way. And for that, I needed to consider what my hopes and dreams were for this year.
It was at this point that I realised that good planning includes not just your hopes and dreams, but also the general aims you have as well as those very specific goals. It’s like three very different but completely complementary layers which, when considered together, create a positive and affirming outlook in life.
And this led me to this…
I feel like these are all really achievable and give me some real focus for creating a far better balance in my life. My word for 2015 is Surrender, and a large part of this includes surrendering the extremely high expectations I hold for myself. Instead of thinking I need to “do it all” I am setting myself some very specific goals which will make a massive difference in my life.
My five goals will assist me in making the five general aims a reality. For instance, working on the crochet blanket enables me to “create more”. Eating at the table helps us have “more family time”. And keeping a personal journal (as opposed to simply writing on the blog) will enable me to “be more mindful” and also “pray more” as I reflect on things.
And hopefully, these five goals and five aims will in turn impact on my five hopes and dreams. Being more mindful will help me live on purpose. Spending more time with family and embracing community will bring more stability to our lives. And that will all hopefully bring about some better health through having better support and worrying less.
Do you see how I have tried to connect everything together in some way? It’s the first time I have really tried to do this on a personal level and I do so hope it will help… but only time will tell and I am “surrendering” my expectations of this and simply choosing to see how it all pans out!
Have you set any goals for the year? Please do leave your comments below, I would love to read about your hopes and dreams for the year ahead!
I don’t know about you, but it feels to me as if 2014 has been a year of battles and anguish. Throughout the world there have been so many heart-wrenching stories of pain and loss, coming one after the other in quick succession, providing very little chance to try and get your head around one thing before another comes to rock your world view.
And away from the large scale news, there are the individual lives that are affected every single day. The deeply personal stories of those affected by the above mentioned events, as well as those fighting their own personal battles. And I count TJ and myself in this.
2014 has been one of the hardest years we have ever had to face. And that is saying something. Since we met in 2007 I have been through 3 pseudo-menopauses, surgery, and a HG pregnancy (further complicated by Obstetric Cholestasis). And TJ has changed careers twice in an effort to continue working despite increasing pain and symptoms that have affected every part of his life. We’ve both faced depression head on, both been in therapy, and both come out fighting another day. Yet this year has pretty much broken us!
TJ’s health took such a huge turn for the worst this year, and in turn so did mine as the stress of working full-time whilst trying to meet the needs of an active 3 year old and a very poorly husband really began to take its toll. We have fought until we had no fight left in us, and thankfully it seems as if the tides are slowly turning and we’re beginning to surface above the crashing waves once more. And we have hope that 2015 will bring us more good news. But we are beat.
And over the past few days I have been reflecting on this a lot. I find that I am in need of a complete change of attitude to the world around us and the personal battles that we all face. For too long now I have been fighting against the tide, passionately hoping beyond hope that one day things will change, when really it might have been easier to choose to surrender and ride the waves instead. But how do you do that when every inch of your being tells you to fight?
It wasn’t that long ago that I wrote a blog post called “Warrior“. And I do still relate to that post a lot. But I’m beginning to wonder whether there is a balance between fighting and surrendering. Choosing our battles has to be wiser than fighting in each and every one that comes our way, surely?
This doesn’t mean accepting injustice, or allowing things that we feel are inherently “wrong” to go unchecked. But it does mean realising that some battles are not ours to fight. Some battles simply cannot be won by giving everything you have to them. Sometimes the battle is not so much the outer experience, but your inner one.
Last night I did something that I haven’t done in a very long time. I prayed. I mean I really, truly opened my heart and asked for help. I didn’t scream out my need for help in desperation, like I have been doing recently, only to then continue trying to fight the battle myself. Rather, I sat in silence and focused on what I really needed. And that was love, acceptance and peace.
TJ and I have so much more ahead of us that we need to face together. Our lives are pretty turbulent at the moment, and it can feel utterly overwhelming at times. And that isn’t going to change overnight. But what can change is our perception of this. We can give ourselves some grace to breathe and be and accept that even when every day feels like a battle, it’s okay.
And I know that for me this means learning how to surrender. I need to give up this idea that I have to fix it all myself. I need to relinquish the thought that I am not good enough, because if only I were better our lives would be better too. And I need to surrender my pride enough to open up my heart and let others in.
It isn’t an easy concept for me to grasp. I have become used to surviving on my own merit. But doing so has led me to become very cynical about life and closed to a lot of the wonderful things in our lives right now. And this needs to change. It is a change worth making, a risk worth taking, and it just feels right.
So my word for 2015 is surrender. I’m going to stick it up on my blog sidebar so that it reminds me every time I log on. I’m also going to add it to the manifestation collage I made for myself on the eve of the Winter Solstice. And I am going to be intentional about surrendering myself to what is happening right now in my life and what is to come over the next 12 months.
Tell me, what changes do you want to make for 2015?
If you’ve been following us here at The Patch for a while, you’ll know that TJ has been suffering from some truly awful symptoms that have been getting worse over the past year or so, to the point where we were seriously beginning to worry about how bad it would get.
We’ve been to appointment after appointment, fighting hard for a diagnosis and treatment, and TJ has struggled with balancing out the side effects of pain medications with the pain itself (which is better: being in unbearable pain and struggling to function, or suffering from lower levels of pain but still struggling to function because the pain meds make you so woozy and sick?!)
The nearest we have got to an answer is a “probable” diagnosis of Small Fibre (or Peripheral) Neuropathy. But as this kind of neuropathy is most commonly seen with Diabetes, which TJ does not have, the neurologists we have seen have decided to simply class it as “idiopathic”. This basically means they don’t know why he is suffering from these symptoms.
Two separate neurologists at two different hospitals have given this answer to us, leaving us feeling like we just have to accept that this is it. And as TJ has not responded well to the “typical” treatments, he has just been given one pain medication after another. The two which were most likely to help had such awful side effects he could not continue on them.
But what about the good news, I hear you say?
Well, today we saw a pain specialist at our local hospital and I cannot even begin to tell you how much I love this man for actually caring enough to look at every single option, including a referral back to the neurology department to try and find out why TJ is suffering from these symptoms.
Finally we have found a doctor who, of his own accord, agrees with us that it is ridiculous to give the diagnosis of “Idiopathic Neuropathy” when they haven’t ruled out every option. Out of the depths of his memory he remembered that exposure to certain metals can cause neuropathic symptoms, and as TJ used to be a plumber and first started getting the very early stages of these symptoms whilst still working in that field, exposure to metals such as lead could be an explanation. It might not be that, but it is certainly worth ruling out!
The doctor we saw today is writing to TJ’s GP to recommend a referral back to the neurology department to look into this further. But even more astonishing (to me) is that he also looked up the name of a neurosurgeon at that same hospital who he thinks TJ should see to discuss the possibility of a Spinal Cord Stimulator. The reason for this? Because, as the doctor said, even if we find a cause… “what next?” Finding a cause is only half of it. TJ is only 33, and so he has at least 30 working years left ahead of him. He needs to be able to live his life and work (like he wants to) and therefore we should be looking into all options to make that possible.
Isn’t it wonderful to find such a caring doctor? Especially after years and years of being fobbed off. I mean, TJ has already changed careers twice and gone through multiple “probable diagnoses” before getting to this point. It’s about time we got a plan in place!
Talking of plans, that’s another thing the doctor did for us. He created a two-year plan of action. He talked us through how useless the pain medications that TJ is currently on are for neuropathic pain. They just aren’t effective for this kind of pain and so there is no point in him putting up with the side effects from them.
Unfortunately the two which are well known to be effective for his kind of nerve pain are the ones he has struggled so terribly with, and the target dosage for these is much, much higher than the dose he was on before. However, the doctor explained how ridiculous it was for him to have been started on the doses the GP gave him, because they need to be started on a much lower dose and given several weeks for your body to become accustomed to them before that dose is increased. To reach the target dosage of one of these medications will take roughly 6 months, to reach the target dose of both together will take around a year. That’s a pretty long process… but it is a process we can begin to take. And that is a massive relief.
In the space of maybe 15 to 20 minutes we went from feeling totally helpless (and hopeless) to having hope that one day TJ may well be able to live a much happier and healthier life again. He may be able to do more with Little Man and me, to go for walks in the woods, and to work a full-time job without making himself so ill he has to spend the weekend in bed recovering. He won’t be totally pain-free, but he will be able to live his life again, and that is the best news we have ever received.
I’m pretty sure that everybody has times in their lives when it feels like one battle after another, one long fight that just doesn’t seem to end. And at times like that it can feel like you’re a warrior against impossible odds.
The past year has been one of the most exhausting battles I think I’ve ever had to face, and that’s saying something! We’ve had our fair share of difficulties over the years, but even the really good things in life have been a struggle lately.
Weary and worn, I found that even the success of the book I had worked so hard to move from thought to reality faded away into a sense of numbness, as I struggled to process anything beyond the absolute necessities: work, parenting, and supporting my husband through an incredible difficult period in his life.
That’s not to say I was worn beyond fighting… if anything my senses were all heightened and I didn’t quite know how to stop. Until something stopped me.
As it turns out, it took a few things to stop me. It took a hideous stomach virus landing me in bed for days on end. It took a lot of heartbreak and tears over what is and isn’t achievable right now. And it also took a lot of anger over the blurring of lines between what I was perfectly capable of still doing and what would actually be too much for anybody, regardless of the other things in my life right now.
That anger spilled out over the past couple of days and it’s not an emotion I am comfortable with. I don’t really know how to process it, because usually I feel frustrated or sad or cross, but rarely angry. But it is a very powerful emotion I needed to feel right now – I needed to feel it to make me sit up and realise that I am “good enough” and that if something is difficult, I shouldn’t allow myself to feel it is my fault that something isn’t quite right.
Which leads me back to the title of this blog post. I am a warrior, not just in life but against all the doubts and fears and guilt I lay upon myself. I am, so often, my biggest enemy and expecting too much of myself is a constant battle. Especially when the going gets tough.
Over the past few months I have been learning a lot of lessons. And it hasn’t been easy. I have lost a couple of friends and had to limit contact with others because the battles I am fighting are not compatible with where they are in their lives. And that hurts. A lot. But whilst I will never stop fighting for change, I do need to learn that I do not need acceptance of that battle from others. I also do not need to be “successful” in any definable terms. Simply turning up is enough.
And that has been the message I have been watching this evening. A little late to the party, I decided to watch the Thrive Moms Fall Retreat this evening, once I had finished work, as TJ is out and Little Man is in bed and I actually had some time to just sit in peace.
I know that Thrive Moms is not for everybody. I hold up my hand and honestly say that I do not personally hold the exact same beliefs as a lot of the speakers at the retreat. I am way too liberal to fit into most groups, and definitely do not define myself as a Christian. However what I love about this ministry is that it aims to support mums to not only survive but to actually thrive in their lives. It aims to hold mums high, no matter what their circumstances, in a place of acceptance and love. And it manages that beautifully.
I watched their Spring Retreat live earlier this year but hadn’t bothered to mark the Fall Retreat in my diary at all. I didn’t really take to the theme of “Warrior” at all. Which, if you’ve read what I wrote above, doesn’t make much sense. But the truth is that until recently I really didn’t see myself as a warrior. At all.
But you know what. I am. And so are you. We are all warriors in life, whether we are warriors for ourselves, our families, our friends, the people we work with, a cause we care about, or the world at large, we all fight battles every day.
And I wanted to highlight the things that this retreat left in my heart. The things that really spoke to me and gave my strength to continue fighting whatever may come tomorrow.
1) We are not called to succeed… simply turning up is what matters!
I actually watched a talk by Marianne Williamson just last week which said the same thing – sometimes we do not live to see the success of the cause we have championed, and yet our efforts made that success possible.
I find this hugely humbling and it gives me hope that no matter what, the work I do today willhave an effect one day.
2) We fight a daily battle against the “small things”, which distract us from the “big things”.
I know this is so true for me. I have always known that I am much, much better at dealing with the big, highly stressful things, because I just do not have time to think too much about them. But the little things? Oh, I totally fall apart when the little things crop up… I over-analyse and fret and just have way too much time to think too much about them.
3) One of the biggest distractions for us can be social media and trying to “keep up” or comparing ourselves with others, when their lives are totally different to ours to begin with.
I know this is also so true for me. I purposefully stopped checking social media regularly a week or so ago and it has made such a massive difference. I do not waste time looking at other people’s lives and wishing I had my life a bit more “together”. And even more than this, I have found I spend more time actually reading blogs and commenting on the blog posts themselves (*gasp*) because I have more time full stop. This is so much more exciting for me than communicating on social media.
4) We cannot do this alone.
Whether you believe in a God of some sort or not, this is still true, I think, for pretty much anybody. You can’t do it all, without any help. You might seek that help from your God, or you might seek it from your friends. You may even seek it from other sources too, but the fact is that if you try to do it all yourself you end up burning out.
5) Being able to write down and actually delve into what your fears are, why you fear them, and seeing them on paper can be very therapeutic!
When asked to write down what I feared and why, I ended up with four very long sentences, which totally summed up why I had been struggling so much lately. Honestly, if you’ve not tried this before, give it a go!
I’ve actually got the last segment of the retreat to watch, as I started writing this during the intermission and then paused the recording to finish writing it. So I’m going to end this post now and watch the rest. But I am so glad I took the time to write this post – I haven’t blogged like this – so freely – in such a long time. This warrior has been trying to “go it alone” and stopping to reflect on this has made such a difference.
If you’re interested in watching the Thrive Moms Fall Retreat you can do so here. And if you’re interested in the Spring Retreat (the theme of which was Hiding Place) you can do so here.
A few weeks ago, we all trotted off on an impromptu walk off the beaten track for a while. We surrounded ourselves with beautiful autumn colours, rolling fields in every direction, and watched the multitude of deer wandering in the woods close by. And it was glorious.
For the first time in a very long time I felt like I could breathe. We used to go for nature walks like this regularly and I hadn’t realised just how much I was craving them until we got right out on our own and allowed ourselves to simply be. Life lately has been one major stress after another and in an attempt to keep going for ourselves and each other, we had both been neglecting ourselves.
It is something that TJ has been discussing in his counselling sessions and something that we have started talking about at home too. Between working full-time, dealing with chronic health issues, and raising a very inquisitive preschooler, we haven’t really given time to nurturing our own needs. And it has taken a huge toll on us both.
I think this pattern of putting your work and family first is very common for parents in any situation and it’s something we need to be aware of. It is all too easy to think that we don’t have enough time to do anything for ourselves when life is simply one necessary task after another. And it can be easy to feel “guilty” or “selfish” for wanting to have more time for ourselves, when we’re made to believe that we should be able to “have it all” without compromising somewhere.
But compromise does have to happen sometimes, and it is really crucial to surviving the busy times in our lives. Right now we barely have a moment to ourselves and life feels like one battle after another, so we are burning out fast and it is showing in so many areas of our lives.
Which is why communication is so important for us right now. It isn’t easy. There are times we we get cross at each other, and times when we really need more than the other can give. But we are getting there.
And in the meantime, I am doing all I can to limit additional stresses that I can change. I have purposefully decided to avoid social media for a while (other than what is necessary for work) as I am aware that however easy it is to simply pick up my phone and “check in”, it is not all that healthy to do so when feeling so run down. Instead I am choosing to pick up old projects I used to have before social media took over my life!
I can’t always get out and about, in the quiet solitude of nature, even though this is my ultimate choice of relaxation. But I can immerse myself in other solitary activities, which give me the chance to clear my mind and focus on my more creative side, which for me is the biggest tension reliever ever.
I was recently given a new sewing machine, something I have always dreamed of having (I have only ever had old, second hand machines which skipped stitches or jammed up constantly) and I plan on getting all my fabrics out and finally working on a patchwork quilt for the winter months. It will take me forever to complete, I am sure, but I am really looking forward to it.
And I have picked up my novel again. I started writing this in 2010, but it needs a huge amount of reworking and completing and I have finally found the desire to do that. Whilst that means working on the computer, it is still a world away from chatting on social media. It is quality “me time” and that is what I need right now.
It is so easy to neglect ourselves, and so hard to dig ourselves out of the pits we create in doing so. But there comes a time when you hit rock bottom and know that this is what you need to do for your own well-being and sanity. That’s where I am now and that’s why I am doing to all I can to change this, so I can cope with the challenges of life with more resilience and ease.