How often do we put everyone else ahead of us instead of actually prioritising our own self care? How often do we think that in order to be a good friend, spouse, parent, or worker we must put the needs of everyone and everything before our own? And how often does that actually work out for us?
If you’re anything like me, you’ll have spent most of your life putting others first. When I look back on my life I can see how I have done this at every step along the way. And when I actually stop to think about that I realise that there is no wonder that I have been so sick lately. Because by ignoring my own needs I have presented a situation in which my body has had no choice but to say “no more”.
I’ve been thinking about this a lot lately. And I’ve realised that if I’m ever going to truly heal and learn to live in a way that is sustainable to my own health, I need to start prioritising self care. And I need to do it right now.
Of course that’s really hard for me, because it goes against everything I have ever believed about myself and what it means to “be a good person”. It makes me feel selfish and I worry so much about what others might think of me. But that’s where the courage comes in, that’s where my word for this year is so very apt for what I need right now. With courage I can feel that fear and do it anyway. Because it is worth it.
And I wanted to share with you how I am doing that, partly because I’m sure I’m not alone in struggling with this, and partly because another aspect of self-care means using this blog for what I need on this healing journey. But as much as I love to write things down, I also find it really helpful to simply share my heart verbally too. So I took to Facebook Live this afternoon and shared the following… it wasn’t very well planned, it certainly wasn’t highly polished, but it was pure, unadulterated passion that poured out.
I mention several books and resources I’m using in this video, which I have listed links to below if you’d like to check them out. And I’d love to hear about your own ways of prioritising self care, so please do share those in the comments below too.
If you’ve been reading this blog for any length of time, I’m sure you know by now that my health has never been great. And if you’ve followed me on instagram lately, you will likely have noticed a big “healing” theme to my posts. But the truth is, I am more sick that I have ever been in my life right now and it has been really hard for me to accept that life as a spoonie really sucks sometimes.
I first came across the term “spoonie” in my early twenties, around the time of my Endometriosis diagnosis. And it felt like such a relief to realise there was an explanation for all I was feeling. I had struggled to keep up with people for years, spent most of my University evenings staying in and getting an early night whilst my friends went clubbing, and would sleep for hours during the holidays to “recoup” from late nights and early mornings studying and finishing a multitude of assignments (language degrees tend to be pretty heavily weighted in the coursework department!)
Of course, you don’t get as many weeks’ holiday to rest once you move into the world of work, and adding in a commute meant that my mid-twenties taught me a lot about my limits as a Spoonie and that sometimes you just have to make sacrifices. By the time we started trying for a baby I thought I knew my limits and how to honour them. How wrong I was!
The past 5 years have been filled with events and experiences that have pushed me beyond my limits in a way I could never have imagined. Hyperemesis during pregnancy (with anaemia, Obstetric Cholestasis, and an unstable pelvis to boot) meant that I started my life as a parent physically beaten and emotionally exhausted. Sleep deprivation, which continued for years with our Little Man, who still at almost 5 years of age only sleeps around 9-10 hours a night and wakes regularly in the night too, affected my ability to rest and recover.
Returning to work, to help make ends meet and pay off our debt, meant that I had less time than ever before and suddenly had to split myself between work and home life. This became increasingly difficult when I moved into a homeworking role, one where my passion for the cause blinded me to the dangers of being “on the front line”, meeting people’s needs when those needs were intrinsically linked to my own personal trauma. And on top of all that, my husband was diagnosed with Small Fibre Neuropathy, meaning he lives in immense daily pain and, as he struggles to come to terms with his diagnosis, his emotional and mental health has taken a real beating.
So, as you can imagine, by the time we reached the end of 2014 I was completely and utterly spent. I remember crying as I walked the long route to nursery to collect Little Man, because I didn’t know how I was going to take another step. I remember being so terrified that I was losing my mind when I became obsessed with what was happening at work and I couldn’t eat or sleep as the anxiety made me so ill. And I remember praying for an answer, knowing that I had given it my all (and more) and I just could not go on any longer…
Of course, I was made redundant at the beginning of 2015, and things began to pick up. I felt well again, I had energy, I was sleeping and cooking and eating and enjoying life. Heck, when we finally moved back to my hometown I started two new jobs, working far more hours than I had initially contracted for, and spent almost every weekend busily attending conferences, visiting family, and having a great time. I thought that was it, that I’d survived the burnout of the past few years, and things were finally on the up!
Except, now I know better. That initial sense of relief that came with making positive changes in my life, was short-lived. No Spoonie can run themselves dry, borrowing not only days’ but weeks’, months’, even years’ worth of spoons without repaying it at some point. And yet still I tried to ignore it. The latter part of 2015 was overshadowed by three-day migraines, daily nausea, awful cramps, all of which I assumed were symptoms related to my Endometriosis. I ended the year with surgery and new meds that had helped previously and I thought 2016 would be okay. But it wasn’t.
I began this year experiencing extreme fatigue that seemed to last for days, especially after a week at work when my shifts all fell on consecutive days. I also began to suffer from joint pain again, as my left hip kept trying to “pop out” without warning, day after day. So I saw the doctor, thinking it was my Hypermobility. Except this time the word “autoimmune disorder” was mentioned and I was referred to a Rheumatologist. Since then I have had another GP, a consultant, and a physiotherapist all mention various autoimmune disorders to me, and I am awaiting screening for Lupus as various things in my blood report suggest it as a possibility. And I finally have to accept that after all I’ve been through, all my body has endured, this is perhaps inevitable – if you don’t respect the spoons you have, things are gonna get worse!
And I look back over the past few years and wonder why I was so determined to ignore that. It’s not that I didn’t know it, because I’ve always known it. My mum was diagnosed with ME when I was in my teens, so I have known about autoimmune disorders for most of my life. I also knew that there is often a crossover of these conditions, where someone like me with Endometriosis (for example) could have a higher risk of developing an autoimmune disorder. It’s one of the reasons why I finally decided I could never have another baby – my body did not recover as well as many of the other Hyperemesis mums seemed to, and I’d watched a dear friend go on to be diagnosed with Lupus following her own Hyperemesis pregnancy. I just didn’t want to risk that. No, I knew about the risk, I just chose to ignore it.
Perhaps that is unfair. The reality is that I had very little choice – my baby needed caring for, my husband needed support in coming to terms with his diagnosis, and the debt needed paying off. Whilst in hindsight I may have made different decisions (for instance, we paid off our debt much quicker with me in a part-time role than we did when I was working full-time!) I can’t go back and change it now. All I can do is learn from it and move forwards.
The reality of life as a spoonie is really clear to me right now. I am so sick that I do not have good days, not really. A good day to me is one in which I can get out of bed, eat without feeling too sick, play with my child a little bit, and maybe put a load of laundry in so that we have some clean clothes. On days like that I have to remind myself to limit what I do, that whilst my house is a mess and I’d love to take my son to the park and enjoy the sun, if I do so I will regret it tomorrow. Because my bad days are really bad. On a bad day I can barely move – I just do not have any energy – and I run a fever, feel dizzy and sick, and struggle to even concentrate on the smallest of tasks like reading a book or sending an email. And I want to avoid those bad days as much as I can.
I know there is no quick fix to this. I know that I ran on borrowed energy for far too long, and that I have to repay that debt with exactly the same amount of care and patience as we paid off our financial ones. But it is hard, so hard! There are days when I feel like a terrible mother, because all Little Man hears all day is, “I’m sorry, mummy feels too poorly to do that.” There are days when I feel like a terrible wife, because TJ is also struggling and I simply cannot do anything to help him out any more, I have to look after myself first. And there are days when I feel like the world’s worst friend, because I’ve not been in touch with anyone for weeks (not even on Facebook) and my mum has to call me to tell me a friend has announced her much wanted pregnancy so I don’t miss it entirely. But that’s the reality of life as a Spoonie, especially when you’ve run out of spoons.
I’m hopeful that as and when I embrace this life of a Spoonie, really accept that this is how things must be and that the sacrifices I make are for a better future, that things will get better. I know many people who have been where I am and have then gone on to manage their condition better over time. I know it is possible to come back from this, and that is what is keeping me going right now. But the only way to do that is to listen to my body, honour its desperate need for rest, and do whatever it takes to begin to heal. I mentioned to someone recently that I know if I am ever to heal, I need to make BIG change in my life. And that’s the reality of life as a Spoonie.
Tell me, if you’re a Spoonie, what does life as a Spoonie look like for you?
Today hundreds of bloggers are meeting together in London for the annual conference run by BritMums, rebranded this year as #BML16 for their 5th year. I have been to BritMums Live (as it was previously named) every year since 2012 and, as always, I initially purchased my ticket as soon as they became available last year.
I had every intention of attending this year too, even writing a post about it for the BritMums blog, because the thought of not being there never even crossed my mind. Walking into The Brewery each year feels like returning home. Meeting up with old friends and making new ones is such a wonderful experience when you spend the vast majority of your time connecting online (if I ever doubted I was a people person then BritMums Live certainly confirmed it for me!) and I never, ever wanted to miss it.
But then I got sick. Or rather, the underlying illness and exhaustion I’ve been experiencing for years now took a massive turn for the worse, and despite ending 2015 with hopes that we were getting on track with my treatment, 2016 has brought more questions than ever. I’ve spent the vast majority of the year desperately hoping to feel better, but a couple of months ago I realised that I simply had to accept the fact I could not guarantee I’d be well enough to attend #BML16.
So I sold my ticket. And it turned out to be a really sound decision, as I have spent the past week pretty much confined to my bed with flu-like symptoms, yet again. Unlike the trip we have to London next week, which will be an easy day trip and possible to manage even if feeling under the weather, I knew that the full schedule of #BML16 would be impossible to manage if I weren’t 100%. Being so sick this week has reassured me that I made the right choice.
And yet, my heart is breaking. I’m seeing all these updates on Twitter and Instagram from people I know at an event that has been an integral part of my calendar for the past 4 years, and I’m not there. It is yet another blow to my already fragile heart, making it clear just how sick I am. And as much as I already know this, for some reason today it feels harder than ever.
I guess it’s because this is where my passion lies – blogging, networking, communicating, socialising, it’s what I do best. This past year has been a little bit crazy, with setting up a new blog and a new business (admittedly both of these have been very slow to grow because of my current health, but growing they are) and I actually took several months away from The Family Patch, my online home of more than 5 years.
But coming back to it has been an absolute delight, a homecoming of sorts, and quite a revelation as well that I have an awful lot of evergreen content on here that has kept my stats steady despite no updates or promotion for well over 3 months of the year! It’s another reminder that this is what I do, this is what I am good at, and this is what I love the most. So to miss out on #BML16 because of my health is like a punch in the gut.
I know that I can follow it all online, and I know that the conversation continues long after the event itself. I’m looking forward to reading everyone’s posts and sharing in their joy… but I wish I had been able to be there too. And that is where the greatest motivation lies for this healing journey I am on, to regain my health so that this time next year I’m right back there with everyone, enjoying every single moment.
That’s not to say that there aren’t other motivations to get well, because there truly are. I want to be well because, quite frankly, being this sick sucks. Big time. I don’t think I’ve ever been this ill in my entire life, and that’s saying something! I want to be well for myself, and for TJ and Little Man. I want to be well so that I can work without exhausting myself entirely. And I want to be well so that I can finally step onto this path of writing and networking that has always been my destiny but which I have shied away from making my career for such a long time.
Which is why being well enough to attend #BML17 is my greatest motivation yet – if I can find myself heading to London this time next year, with a smile on my face and the courage to say “this is who I am, this is what I want my life to be, and this is how I’m doing it”, then I shall know that I have made an incredible, life-affirming change in my life.
So thanks #BML16 for showing me all that I am missing this year – it’s the heartache of missing you that makes me so determined to change my life so I can see you again!
Have you ever noticed that there is a real expectation in society that it is not only admirable to “have it all” but also entirely possible to do so? And yet, I don’t think I have ever met (or heard of) anyone who truly “has it all”, have you?
Sure, I’ve read all those inspirational books and interviews with people who appear to have it all, those who balance work and home life beautifully and have created a lifestyle that suits them perfectly, but I’d like to hazard a guess that there are things that they too have had to let go of or leave behind in striking such a balance.
What we see in these stories are the good points, the bits that work, but we never see the failed attempts made along the way or the things that have had to change whether change was wanted or not. And yet it is those parts which really speak to me, remind me that we are all human and that we all have limits.
Recognising and honouring our limits can be so difficult, especially when we are bombarded with messages that tell us that we can “have it all” so long as we want it enough. Sometimes this message isn’t even meant in a negative way – inspirational and motivational messages of hope really do have a place in helping us to achieve our goals and make our dreams a reality. But without the balance of messages that remind us that sometimes we just have to accept our limits, we can easily find ourselves pushing beyond boundaries that are there for a reason.
I say this from experience. Over the past few years, since becoming a mother, I have tried to “have it all”. I have wanted to raise my child in a happy and healthy home, help my husband provide financially for my family, achieve multiple dreams connected to my writing, be the best friend and neighbour I can be, improve my skills through ongoing education and personal reading, and all whilst still finding time to relax and enjoy life. I never thought that this sounded like too much – it’s what anyone would want, right? But in trying to do it all, I have worn myself to the bone for far too long and am facing the consequences of this.
You see, this past year my health has been appalling. Admittedly it hasn’t been great for years, but for a long time this was masked by the fact that I had the time and space to rest and recover whenever I pushed myself beyond my limits. This just isn’t the case now that I am a mother, even less so since returning to work and trying to balance work and home life. And in my attempts to carry on regardless (because, hey, it really is possible to “have it all” don’t you know?) I have not only ignored my limits but have downright trodden all over them.
And the reality of this is that my body has begun to fall apart in ways that make me stop and reassess the situation. I have no choice to carry on regardless these days, I have to respect and honour my limits. But in doing so I am beginning to realise that this really is the key to healing – it is only when we understand that we need to be healed that the healing can begin. And this, for me, means accepting my limits and making changes to ensure that I can honour them too.
Of course there are some things I cannot change – my responsibilities as a parent must always come first, and I have to work in order to continue to pay the bills. But when I look at all the other things I was trying to achieve I realise that some things will simply have to wait. That novel I’ve been wanting to complete for years now can wait a few more years – the time I could spend writing could be spent sleeping instead! And those crochet patterns I’m just dying to try out will still be there next year, when the yoga I begin to do this year helps my body heal and I have more energy.
As for that blogging conference I always attend and love so much, well as much as it pains me to sell my ticket I know that spending my annual leave resting and recuperating rather than travelling and networking will be time well spent. There is always next year, after all! And the added bonus of not attending it means that the money I would have spent in getting there can be put to use in my healing journey. And that’s what it’s all about…
You see, honouring your limits doesn’t mean giving up on everything. Yes, it means making conscious decisions about what is and isn’t achievable and yes it also means realising that trying to “have it all” can be a dangerous game to play, but it doesn’t mean giving up on everything. I have some pretty big dreams right now that, if they come together, will make things a whole lot easier for us as a family in the long-term. But in order to make them a reality I need to invest in my own health and well-being first, something which is really quite alien to me.
So by honouring my limits and prioritising the most important things in my life right now I am not really deciding it is impossible to “have it all” but rather looking to “have the best for me”. And that, my friends, is what I think it’s all about.
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?
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.
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
Three years ago today I was at the hospital, having been induced early that morning. Despite the fact I didn’t know what to expect and was starting to feel decidedly unwell by this point in the day, I was thankful that whatever happened I was not leaving that hospital again until I had given birth to my baby. Nine long months of suffering with hyperemesis gravidarum was finally going to be over, and I was ready to move on. However, I totally underestimated just how difficult life would be over the years ahead. After such a challenging pregnancy I was convinced life could only get better. And it did in many, many ways. I was finally a mother, something I had always dreamed of being, ever since I was a very young girl. I loved every sleep-deprived moment of those early days, but life was far from easy.
Over the past three years so much has happened… both TJ and I have changed jobs, I’ve written a book, and Little Man has grown into the most adorable little boy. But the biggest change has been in TJ’s health. I have watched my husband gradually lose himself to some truly awful neuropathic symptoms and my own health has, in turn, taken a real beating as I try to balance the changing needs of my family along with working full-time and working on the book. I am, quite frankly, beyond exhausted.
Most days I feel like crying. I feel myself breaking into a million pieces, torn between so many responsibilities. And I have lost so much of the optimism and faith that once defined the way I viewed the world. I’ve lost the trust that “one day” life will get easier! But beneath all of that sadness, anger and grief, there is a little light that shines so brightly… This gorgeous boy of mine, the one I fought through nine terrifyingly long months of sickness to meet, means the world to me. He is, quite simply, the light of our lives and no matter how hard things get, we keep going for him. Because he is worth it.
There was a time when I wasn’t sure I could have children. Despite the fact I would have loved a larger family, there are some incredible blessings to be had in having an only child. Our love for Little Man is unrivalled by any other, and his love is poured on us just as freely. Whilst I know we would have loved other children just as much, knowing that we get to pour all our love onto him alone is a wonderful feeling.
Of course we have our moments, times when I worry about the effect of all this stress on him. The times he sobs and just wants his mummy because he cannot express what is wrong, just that he is sad. And his frustration comes out by hitting, kicking and pinching right now, which is incredibly difficult to cope with. But even at those times we know that his heart is full of love for us and others, because we see it every single day. He adores making friends and finds joy in the simplest of things and reminds us that life is so beautiful, if only you would look. Daddy will probably hate me for posting this photo, but I love the beauty in seeing my boy sharing with his daddy and “looking after him”
The nine months of sickness were more than worth it for a lifetime with this beautiful little boy, and knowing this gives me the hope and strength I need to know that the battles we are currently facing are more than worth it for the life we have together. Right now. I no longer look for “one day”… that day may never come.
But right now my life is so totally blessed. I have a husband who is my best friend, who has stood by me through my darkest periods and now trusts me to stand by him through his. And together we are raising the most important person in our lives, receiving just as much from him as he receives from us. No matter what life throws at us, so long as we are together we will get through it.
We climbed on board the train, bought our “ticket to ride” and chose the people we wanted to go on this journey with. I have no idea where we’re going, what the destination is or when we’ll get there, but right now I am choosing to enjoy the journey for what it is. A blessing.
This post has been added to the Share the Joy linky (hosted by Bod For Tea) on 2nd February 2015
I hadn’t planned on writing so much about how I am struggling right now, but it seems as if writing about these things is more important than I realised.
This past week I have written two posts about my health and each one has received over 200 hits – my blog never receives that much interest in one day, let alone twice in one week! And this has given me the confidence to know that it’s okay to use this space to share how I’m feeling. And right now, sharing how I am feeling is so important because I need to let it out somewhere or I might explode.
So let’s start with guilt.
It’s not a pleasant feeling is it? It’s certainly not very helpful at times. But it is very, very invasive and creeps up on you at the worst possible moments, doesn’t it?
This past week I have really struggled with my physical health, and my emotional and mental health has suffered too. I have felt guilty over pretty much everything that has happened.
I’ve felt guilty for snapping at Little Man when he has jumped on me or dragged me off the sofa when I’ve been feeling really poorly.
I’ve felt guilty for not being able to remain strong and clear headed when TJ was changing meds and feeling out of sorts himself
And I’ve felt guilty for having to miss yet another friend’s birthday because right now it feels like all I am ever doing is saying, “no, I’m sorry, I just can’t make it.”
I felt guilty for not taking Little Man to toddler group because I felt so poorly.
I felt guilty for not cooking nutritious meals from scratch and making my family eat easy, convenience food.
And I felt guilty for missing my brother-in-law’s birthday because it completely slipped my mind.
Quite frankly, I feel guilty as a mother, I feel guilty as a wife, and I feel guilty as a friend. In each of these roles I am falling short because I am feeling so ill I just cannot give what I want to each one.
And that’s hard for me to take.
I was talking to a friend this morning about the way forward and whether I should be considering more drastic action to deal with my symptoms and I realised just how much this is taking over my life. A year ago it was bad, now it is unbearable.
I find myself in a familiar place, except last time I was here I wasn’t a mother and I remember very clearly saying to TJ that I didn’t know if I would ever be well enough to have children and maybe we weren’t meant to be parents.
And I feel immensely guilty about that! I have the most beautiful son, who is the light of my life, and I cannot give him what he deserves because I am so ill. And that breaks my heart.
The past two years have been spent coming to terms with the fact that we cannot have another child… and yet suddenly that means nothing. Right now my focus is on what I need to do to be well enough to give the child I have the best of me.
Don’t get me wrong – my son is loved, he is cared for, he is thriving in all areas. I am not failing him in any way other than the fact that I want to do more. I want to be well enough to plan activities and trips away to see family and friends, and actually be able to do them. Right now I just cannot do more than what I have to do. I can feed him, clean him, clothe him, play with him, read to him, teach him and love him… but at the end of all that I am so exhausted I don’t know how to recover.
And there are so many things I want to give him. So many things I want to give my husband. And so many things I want to give myself. I want to complete the HG book. I want to devote as much of my career to changing things for other women, so that they never have to feel these emotions. And I want to have a life where my health doesn’t dictate what I can and can’t do. Where we can invite Little Man’s cousins and friends to stay or we can plan a holiday of our own without thinking “will I be well enough to do this?”
And right now I know roughly what I need to do to get there, but the path is a scary one. It means considering more invasive surgery than I have ever considered and that terrifies me. But I think I’m at the point where I no longer want to live like this – I want to see what life is like without it hanging over me.
I’ve spent more years of my life controlled by my health than I have without these health issues, and that is a fact I want to change sooner rather than later.