Home » chronic illness

Tag: chronic illness

Prayer Candles

Embracing Uncertainty, Grief, and Vulnerability

I was unsure what to call this post, because there are so many things that are heavy on my heart right now. But I think the title I’ve chosen sums it up rather well. For such a long time I have been desperately fighting the uncertainty over my future, the grief I feel over things beyond my grasp, and the vulnerability that comes with accepting that I am sick and that I can no longer give until I first learn to receive. Resisting all of that has taken its toll, and it’s time I learned to embrace it instead.

I hasten to add that this isn’t a new concept to me – I’ve known I’ve needed to do this for years, but knowing something and actually accepting it are two very different things. Even as my health has deteriorated over the past few years, I have refused to acknowledge just how ill I have become, because doing so felt like giving up. Even up until the very beginning of this year, I was determined to make it all work somehow – I’d go freelance and work from home, I’d schedule in time each day to focus on my well-being, I’d cook healthy meals from scratch, and I’d find a way to do all of this and continue to run two blogs, be active in social media groups, and get more involved in my local community too.

How hard could it really be? I thought. After all, I wasn’t quite as sick as I had been when first signed off work last summer. Several months of trying to rest as much as possible had made a difference, but I needed to get going again to help make ends meet financially, and I didn’t want to be held back by my illness anyway. Unfortunately, with all the determination in the world, there are some things you just cannot change. For me, this is my health. I’m not talking about small changes like eating healthier and getting exercise – of course those make a difference. What I mean is that, if you are chronically ill, sometimes you just have to accept your limitations and find a way to work within them. But that it something I am terrible at!

The past 3 months have practically broken me: I’ve been working with several clients on some pretty big projects; I’ve seen my family struggle with my Nan’s final weeks on this earth; I’ve had multiple conversations with Little Man’s teachers as he has been struggling to settle into the school environment; and I have tried to keep my home running as smoothly as possible throughout all this change, all whilst suffering from multiple viruses on top of my general ill health. And yet despite all of that happening, I still continued to try and do more…

When I look at it like this, I realise how unbalanced my thinking really is. And I understand why I live with this constant knot of anxiety at the pit of my stomach, never knowing when a full-blown panic attack may occur.  Because I haven’t given myself time to breathe, time to sit in the uncertainty of my life and grieve for all that I had once wished for but which can no longer be. And I certainly haven’t allowed myself to be vulnerable, because that fills me with absolute dread – what happens if I do that and it all falls apart?

So, of course, life enabled me to experience that which I feared the most, didn’t it? This week I was faced with “saying no and letting go” to so many things, things that I not only felt I ought to do but which I really wanted to do too. I had filled my week with fun activities – a trip to the Cathedral with a friend, and singing in the choir for the Church Panto. But a stomach bug stopped me in my tracks and made me realise I simply cannot do it anymore, I cannot continue to pretend I am coping when really I’m so close to breaking.

Prayer Candles

I toddled off to the Cathedral with my friend, feeling worse for wear but determined to make it through the week, and ended up spending half of the time in the toilets! I then sat quietly in a little chapel, knowing that I had to cancel my plans but so terrified of letting people down. Thankfully my friend was a wonderful comfort that day, encouraging me to allow myself to be vulnerable for once and not worry so much about other people, and I cancelled attending Bible Study that afternoon and Panto Rehearsal/Performances for the rest of the week. I cried so much when doing it, partly because I hated to let others down, but mostly because of what this signified. In cancelling these plans I was truly beginning to acknowledge how ill I truly am right now.

Which led me to thinking about all the areas in my life that drain the energy I simply do not have to spare. Many of them are things I love and am so passionate about, and it breaks my heart completely to have to put them aside right now. But the alternative is continuing until I break, and having been there just a year ago (and again a couple of years before that) I am desperate not to return to that place any more. This time I want to truly embrace the uncertainty of it all, to grieve for all the things I wish were different, and to allow myself to be vulnerable in this space. No more “putting on a brave face” and pretending all is well when it’s not. Wow, that is hard for me to write… and even harder to live!

Which brings me to the point of this blog post, really. I’ve had a good, long (and extremely hard) look at all the things that I have going on in my life and decided that I have to cut back on so much in order to give myself the time, space, and energy to truly begin this healing work. And here’s what I’ve decided:

1. I shall make time every single day to seek out the love of God which I know is helping me through all of this. This will take various forms – sometimes it may be reading a book, sometimes it may be walking in the park, and sometimes it may be sitting in silence.  Whatever form it takes, I want it to become a prominent part of my day, helping me to truly embrace the uncertainty of it all, trusting that I don’t have to have it all figured out!

2. Leading on from this, I shall use The Family Patch as my place to simply write what feels important to me, rather than trying to produce “useful” content. And right now that is likely to be a lot about faith. I know that this isn’t everyone’s cup of tea, so please do feel free to unsubscribe or mute updates from me if you don’t want to read this kind of content. But for those of you who are interested, please do share with me your own thoughts and experiences in the comments, as I’d love to hear from you.

3. Even though it is faith-based, I am taking a break from Spirit Kid Network. I simply cannot devote the time needed right now to build up the kind of content it deserves. There is still content to be found over there from last year, plus my free chakra guide for kids, so I’m not shutting it down completely. I simply need to release the pressure of producing new content on a regular basis on both of my blogs.

4. I am also going to limit my use of social media, particularly Facebook Groups. To be fair I haven’t been using Twitter, Instagram, or Pinterest that much lately anyway. But a large chunk of my time gets caught up in Facebook Groups. Most of these are relevant to the work I do at Shortman Media, so it feels a bit risky to step back from some of them, but I really do need to limit my time spent helping others – every short answer I give soon adds up over the length of a week.

The Faith Space

5. That being said, I do want to spend a bit more time in The Faith Space, which is a Facebook Group I set up for those of us who wanted to discuss faith in an open and religiously diverse way. I’m not promising anything in terms of how much I’ll actually do on there, but if you’d like to join us please do request to join the group over on Facebook.

All of this means that the limited time and energy I have outside of what I have to do (freelance work, housework, family life etc) is less likely to be eaten up by multiple different things and more likely to contribute to my overall well-being, by focusing on what is most important to me right now. I am a giver by nature – I want to be there for everyone, encouraging and supporting them, no matter what. But that takes a lot of time and effort, which I simply do not have right now.

So, that’s where I am right now – embracing uncertainty (and trusting in God’s plan for me), grief for all the things I have to let go of right now (including all those big, exciting plans I have), and vulnerability (so that others can offer love and support where I cannot). It’s an emotional place to be, and I have cried more over the past few days than I have in months, maybe even years. But that’s all part of the journey, isn’t it?

Nothing ever lasts forever... Brighter days are always ahead

Life is like a Spiral Dance: Reflections on the Solstice

Today is the Midwinter Solstice, the shortest day of the year and the turning point at which we start the slow journey back towards the long days of summer. And as has become my custom over the past few years, I am taking some time out today to reflect on all that has happened over the past 12 months and what I hope to achieve in the coming year.

I find the Midwinter Solstice really symbolic in helping me remember that nothing ever lasts forever, and brighter days are always ahead. The past few years have felt like a never-ending battle, with ever more challenging situations developing despite my determination to keep going, and keep growing. Over time I have found my strength and resilience waning, both physically and emotionally, to the point where it feels like things will never change. And yet I only have to look at nature to realise that this isn’t so. Right now the trees are bare and the skies are grey, and yet I trust that Spring will come again, it always does.

When I apply this same reasoning to my own life I begin to see that even the most traumatic times in my life have come to an end at some point – my dark nights of the soul never last forever, even when I fear they might. So, when I look back on my Solstice Reflections from the past two years, I could easily conclude that yet another year has gone by and I’m still sick, still poor, still suffering. But the reality is not quite that simple.

My 2014 Solstice Reflections came during a truly traumatic time for me, when I really couldn’t see any way out of the situation I had found myself in. And yet I did, and the next year started off really well. Unfortunately by the time I reached December my Solstice Musings for 2015 seemed to find me back at square one, with another Christmas spent struggling physically.

However I was in a better place emotionally and spiritually than I had been just 12 months before, and so I was able to see that instead of going in a circle I was actually following a spiral dance, coming around to a similar spot but always just a little bit further on. The same can be said for this year too, and I am so very grateful to this blog for giving me a very tangible record of where I’ve been so that I can reflect just on how far I have come.

You see, my focus word for 2016 was “Healing”. I was determined to make sure I did everything I could to help my body heal after several unbelievably stressful years that had taken a real toll on my physical health. I started with healthier eating, regular yoga sessions, and a desire to look after my emotional health by limiting the pressures I put upon myself (which included over 3 months away from Facebook and 5 months away from this blog!) But despite all my best efforts, I ended up more physically sick than I have ever been in my life, which felt like the furthest thing away from healing as possible!

And yet, despite being so physically ill that I couldn’t even get out of bed or think straight at times, I began to realise that I have still been doing a huge amount of healing work. No longer could I ignore my body’s cries for help, I had no choice but to stop and listen. Even more importantly, I could no longer try to pretend that all was well and I could fix things by doing the same old stuff I’d always done. I had to learn to trust in something greater than myself, and accept that there was no quick fix to all of this.

Healing takes time, especially when you’ve put everyone and everything before yourself at the expense of your own well-being for far too long. You have to learn to live in an entirely different way, to accept a slower pace of life, and trust that your world will not fall apart just because you say no to things (even things you’d love to do).

When I look back on all the progress I’ve made this year in terms of self-care and self-love, I realise that I have done far more healing than I ever expected. I learnt that it’s okay to not be okay sometimes, that affirmations set us up with the perfect mindset from which to heal, and that self-love is something I struggle with a lot.

I’ve started to change the way I care for myself, by connecting with other chronically-ill people who understand the realities of spoonie life. And I’ve been learning to honour my limits (even when that meant missing out on something I truly love), and investing instead in things that will truly help me where I am right now. This year I’ve been blessed to have one-to-one sessions with both Pippa from Story of Mum and Michelle Reeves, who have each taught me so much about myself and my ability to heal and grow.

Which brings me to where I am today, on the longest night of the year. Once again I am struck by the deeply symbolic nature of the Midwinter Solstice and its celebration of the return of the light through the darkness. This year has been a dark one in many ways for me, and I am ending 2016 without a firm diagnosis for why I have been so ill, despite countless appointments with numerous specialists throughout the year. But within that darkness there has been so much light for me to find, and I truly do feel as if I am firmly on a healing path, making progress step by step on this glorious spiral dance we call life.

I’ll be back again before the end of the year to share with you the word I have chosen for 2017, I’m so excited about this one! But for now I want to simply wish you all a very Merry Solstice and a Happy Christmas too.


Linking up with #ShareYourYear hosted by Belle du Brighton, as this post sums up the past year for me very nicely. Pop over to the linky to find out what other bloggers have been up to this year – it’s a great way to get a snapshot of bloggers’ highlights (and find new blogs to follow!)

Share your 2016 - Belle du Brighton

Living with Chronic Illness – How We Support Each Other

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!

Living with Chronic Illness-How We Support Each Other

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?

Blessings in disguise

Following on from my post "It's End-O, not 'The End'" last week, I thought I would explain to you why I chose that particular name…

Endometriosis is a chronic condition, which means that it affects the sufferer's life in many different ways, over a prolonged period of time. When a woman first finds out she has Endometriosis it is likely that the condition has already affected her life through either pain or infertility and will have several repercussions for her future. 

100_0290
 

My own personal experience with Endo started when I was 13 and began having periods. Right from the word go they were painful enough to put me in bed and irregular enough that all my friends knew to come to me if they were caught unprepared because I constantly carried a bag full of sanitary towels and painkillers, thanks to such irregularity. At times I would feel sick for one week, have my period the next, feel better for one week, then feel sick again and have another period the following week – an exhausting, and confusing pattern for anyone, let alone a teenager just coming to terms with the fact that her body is changing.

I was 21 before I got my diagnosis and only then because I pushed, and pushed, and pushed for surgery to explain what was going on. I had, in the time since starting my periods, already tried three different contraceptive pills, numerous prescription painkillers and tried to "go it alone" as well.

100_0289
 

After my first laparoscopy and diagnosis I was given a Mirena coil, which prevents the womb lining from growing. For three months I had severely heavy periods and struggled to deal with the onset of IBS at a time when I had to focus on my education (I was in my final year at university). But, thankfully after those three months my periods stopped and I could finally start to live like a normal person – or so I thought…

Two years on, I started having pain and unexplained bleeding and another battle ensued to get the doctors to pay attention. I even paid to go privately to get my doctors to take me seriously. Despite having had a previous diagnosis, they seemed reluctant to believe anything was wrong as I still had no real bleeding… how wrong they were!

My second laparoscopy enabled the doctors to see I had stage III Endometriosis and among the adhesions caused by this was the most painful attachment of my uterus to my rectum. If the doctors weren't convinced anything was wrong with me, how was I to show the world my pain? 

You see, like so many chronic conditions, Endometriosis is an invisible one. From the outside a woman can look perfectly fine, yet inside she may be falling apart. Endometriosis isn't just about pain and infertility, although these two are awful consequences some sufferers have to deal with. It can also cause depression, fatigue, relationship problems and sometimes embarrassment. So, it is easy to become a victim to it…

100_0037
 

And that is why I chose to call my own fight against it "It's End-O, not 'The End'"… I refuse to let my Endo be the cause of the loss of my dreams, ambitions and joy of life. I won't lie to you – there have been times when I just wanted to give up, and times that giving up were my only option (such as giving up full-time work), but that doesn't mean I give in. My dreams are too important to me to let the condition win, and spreading awareness for those who do not feel able and facing those who do not want to discuss such a "taboo" subject as periods is too big a mission to step away from when I know I have the ability to do so in a good way (after all, the written word is a major love of mine!)

This doesn't mean I do not understand how easy it is to become a "victim" and nor does it mean I will not stand by those who are unable to fight, for I cannot even begin to comprehend just how painful it must be to lose pregnancy after pregnancy to the condition or become so affected by the condition that your relationship breaks down… it just means that I choose to fight for all those who cannot, to support them when they are down, and be as honest and truthful about my own experiences to help spread awareness to the world, whilst showing that it doesn't have to be "The End" of your dreams…