Living Life, Within the Limits of Chronic Illness

Author: Clare Page 1 of 57

The Future

It wasn’t until very recently I realised that I don’t tend to think about the future any more. 

People always ask me what I want to do with my life. What I want from it. What my dreams are. And I honestly have no answer. I don’t tend to think about it. 

I guess I dare not to hope too much. To dream of what could be any more. I take everything one day at a time, sometimes one hour at a time. My health dictates that I do. 

How can I think about the future when I don’t know what my health might be like? Right now I have no solid answers, nothing to indicate whether my health will stay as it is forever, improve at all or even deteriorate. My doctors are still working on finding out exactly how my “system works”, to quote one of my doctors. The truth is we still don’t know a lot about what is wrong and what it means. 

With that in mind, is it really that strange that I find myself unable to think about the future? 

I’d like to imagine it might include finding a partner, moving out of my parents house and living more independently. Much like I always thought it would happen when I first got ill; although back then I always imagined I’d get better too, now I’ve accepted that might not happen. But do I really dare to hope that any of the rest will happen? 

I’m not usually a negative person, I’m always one for finding the positive in a situation. But for some reason when it comes to the future, and what I want from it, I don’t really have any answers; positive or otherwise. The only thing I want is to know exactly what is wrong with me and what that might mean, what the treatment options are, and ultimately what the outlook is. 

Until I know that, is there any point in even taking baby steps towards something which could end up being unobtainable? I’ve had so many hopes dashed over the years; things I’ve hoped to achieve but not been able to, perhaps this is just my way of protecting myself. 

Perhaps I need to chink away at the wall I’ve put up, to try and find a way to see something in my future rather than just focusing on getting through each day. Because at the moment that is all I’m doing. And it’s all I can think of doing. 

I dare not hope too much, I’m scared to do so. I don’t think I could cope with the disappointment if my health meant whatever I hoped for couldn’t happen. And I know that sounds negative, but trust me I do find positives in every day. I’m just not ready to try going beyond that yet, I need to focus on the things I can do before working towards those things I might be able to do. 

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Birthday Blues?

Ever since I became ill birthdays have been bittersweet. They are extremely difficult to navigate emotionally; on the one hand I can enjoy the day, the joy that comes with seeing friends and family (all carefully paced often across more than a day) but on the other hand it is really really hard to see another year go by in which things have stayed pretty much the same.

Somehow on birthdays I always end up looking back at life, and it is often heartbreaking to see how little has changed over the years. Sure I’ve learned how to better pace myself, we have certain symptoms under better control, I’ve gained new diagnoses, do daily physiotherapy and now have regular hospital appointments where we are trying to find out more about how my body functions.

But ultimately a lot of things remain the same as they were back when I was 12. I still spend most of my time at home, still live with my parents and rely on them for basically 24/7 care; from helping me up & down stairs, to dressing & undressing my lower half, they also deal with my fainting episodes and so much more. I rarely leave the house without them & am unable to go out on my own – I always have someone with me. And there’s much more than that too.

Because it has now been so long since anything has ultimately changed, I struggle to look to the future. In fact it’s not very often I think about the future, but that’s a story for a whole other blog post!

Anyway it’s safe to say I now find birthdays so much more difficult than they were pre-illness. Yes there are happy moments, and I do still manage to “enjoy my day” but behind that smile you see on my face is a whole turmoil of emotions and the grief for a life which I feel I’ve missed out on and am still missing out on, for all the things I’m still unable to do despite my age.

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Going Solo

This might seem like an odd post for a 28 year old to be writing. But it only really highlights the vast difference having a chronic illness from a young age makes to life experiences. If you follow me on social media you’ll know I tend to celebrate the little achievements, alongside the bigger ones; appreciating all sorts of things which most people take for granted, from leaving the house for an hour to being able to sit upright without fainting.

Well today I’m writing about what I class as a big achievement: For the first time in my life, on August 4th 2021, I went to a hospital appointment on my own. And to be totally honest, it wasn’t through choice that it happened then; it was through necessity.

You see hospitals here in the UK seem to be remaining understandably cautious when it comes to lifting the restrictions they have in place; or at least that is the case at the hospital I had to attend for physiotherapy. I’d already had one virtual appointment but we agreed it would be better for the physical examination and guidance to be done in person, the only downside of this would be that I would have to travel there and attend the appointment on my own, something I had never done before; having become chronically ill at the age of 12 and needing someone to push my wheelchair for me, at least one of my parents had always attended appointments with me.

I have to admit to being incredibly anxious about it, both in the days leading up to the appointment and on the day itself. I hadn’t had an in person hospital appointment since January 2020, so well over a year. And my anxiety wasn’t exactly helped by the long wait for hospital transport to pick me up from home! I was told they’d pick me up at 8am or just after depending on traffic, but transport didn’t arrive until 9:30am; there’s nothing worse than waiting like that, unable to do anything in case they arrive and constantly wondering if you should go to the loo so you’ll be totally ready when they arrive. I don’t know about you but when I’m waiting for something like that my bladder seems convinced I need to go every 10 minutes so I know I won’t need to go when they arrive!

The journey itself went well, as did the appointment. I’ve learned a bit more about my body, and how certain muscles aren’t engaging when they should; I’ve got a couple of new exercises to add to my existing physiotherapy routine to try and get those muscles to start engaging when they should. And I go back next month to see how I’m getting on and to learn some more – we’re focusing on one area at a time so as to allow me to gently introduce the exercises while continuing to pace myself. My physiotherapist would rather I do a few good consistent repetitions of the exercises than lots of poor, less consistent repetitions which would be less effective.

I was incredibly lucky after my appointment in that I barely had to wait two minutes before hospital transport arrived to take me home (It can often take an hour or so!) and despite getting stuck in a bit of traffic on the M25 the journey home wasn’t too bad either, even if I was yawning away in the back as the exhaustion began to hit.

But overall things went well. Was it as difficult as I anticipated? No. The staff and volunteers at the hospital were all really friendly and helpful. The backpack I had on the back of my wheelchair worked quite well, although wasn’t as easy to zip/unzip while sitting in my wheelchair as I thought it was, so that’s something I need to think about changing but it wasn’t impossible so might just have to suffice for next time. Will I be anxious when I have to go again next month? Hell Yes. But I’m hoping the more often I do it, the more the anxiety will ease each time; it did before when attending hospital appointments with one of my parents – at first I used to get really anxious, but the more appointments I had, the more that anxiety eased and I’m hoping this will be the same.

I am so proud of myself for pushing past my anxiety and going to this appointment on my own, not only that but for booking the next one to be in person as well meaning I have to do the same thing again next month. As I said at the beginning of this post; it might seem strange to be posting about being proud of doing this at my age but for me it is a first; there are so many experiences I have yet to encounter having been chronically ill since I was 12 that I celebrate every single one as I encounter them, this one is something quite ordinary but there’s others which aren’t quite as mundane and I hope that one day I might even be celebrating an experience which I thought would never happen. Whatever it is, if it feels like a big achievement for me I will celebrate it in some way.

For now though it’s a case of recovering, keeping my physiotherapy up and preparing for my next appointment – I currently have roughly one a week with varying professionals now involved in my health and managing my condition, so pacing myself in order to manage them, while still keeping my physiotherapy up is going to prove challenging in the coming weeks.

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A Day in my Life 2021

In contrast to last year’s Day in my Life post when the majority of the country was experiencing what it’s like to be housebound due to the lockdown we were in, as I write this post we are tentatively exiting lockdown here in the UK. Places are slowly starting to open up again after being closed on and off for over a year; and there’s some which have been closed that entire time. Like last year I am finding this period of change rather difficult, seeing the world return to more normal living while I’m stuck doing the same things I have for years, even prior to lockdown – for me the lifting of restrictions makes very little difference; yes it means I will be able to see family and friends a little more often because they are allowed to visit, and I am making the occasional trip out again, something I’ve not done a lot of over the past year. But for the most part my life remains unchanged, 90% of my time will still be spent at home within the confines of the house and on good days the garden too.

But anyway, back to what this post is supposed to be. For the last 8 years I have posted about an average day in my life on M.E. Awareness Day (May 12th) or there abouts. And this year is no different, so here we go:

I wake at 7:45am, 15 minutes before my alarm is due to go off.  I feel unrefreshed as if I’ve slept less than I have but I inch my way up to a sitting position because experience tells me if I fall asleep again until my alarm goes off I’ll only feel worse. So I slowly sit myself up, assessing the pain levels and where the most pain is as I do so before reaching for my slipper socks on the end of the bed and slipping them on. I then get out of bed, making sure not to do so too quickly so that I don’t make myself dizzy. I put my dressing gown on and slip a pair of compression socks in my pocket.

At 8am I make my way down the stairs, fairly steadily, holding on the rail for support. I use the bathroom, turn the washing machine on (that I loaded the night before) and then get myself a bowl of cereal and cup of fruit squash before settling myself down on the sofa to eat breakfast and take my morning medication.

I have a bit of a rest before I get my compression socks on, usually with help from my Dad. I rest for a little longer before getting up and going to the bathroom around an hour after getting up, where I clean my teeth and wash, before heading upstairs to my bedroom again. Once there I have a short sit down before I begin doing my physiotherapy on the bed; 11 different gentle stretches, with reps of between 2 and 5 depending on the exercise.  I then have another short rest before I get myself dressed; I tend to do my physio in my pyjamas as I just find it easier.

I gather up any dirty washing and take it downstairs with me to put in the dirty laundry basket. Now it’s time for cuppa! My Mum usually makes this one while I sit on the sofa with my feet up, having a bit of a rest. I might watch something on the TV or do some knitting depending on how I’m feeling.

Usually around 11am I get up again and take the washing out of the machine, either putting what can be tumble dried in the tumble dryer and putting what can’t on the airer, or folding it into a basket and putting it on the washing line outside; if I do the latter it can take me two or three trips depending on how heavy the clothes are, and I always put the basket on the garden table or chair so I don’t have to bend down to it as that often results in dizzy spells. I’ll often have a little break and sit down while putting the washing on the line as it involves lifting my arms up higher than it does for an airer and after a few goes my arms start to hurt so I have to rest.

11:30am and I sit down for yet another rest, having made myself a cup of tea. Again I might put the TV on and half-watch something which is simple to follow during this time, or do some crafts that don’t involve too much in the way of concentration as the housework I’ve just done has taken quite a chunk of my energy. I stay this way until lunchtime, usually when my Dad comes in from work.

Dad often makes my lunch for me so I can continue resting on the sofa as the pain is starting to increase by this point. I take some more medication with my lunch, and then spend most of the afternoon on the sofa either resting or chatting to him when he’s around. If the weather is nice, and my legs allow, I might wander out into the garden and sit out there instead. Usually chatting to my Dad or neighbours (from a safe distance, each of us sat in the middle of our gardens) whoever is about and happy to chat about anything and everything; stuff that doesn’t matter if you forget!

By 3;30pm I’m often starting to flag. I become quieter and not quite as involved in any conversation. Just listening to what’s going on rather than joining in. Around 4:30pm you will often find me sloping off upstairs to get changed into my pyjamas. I come back downstairs, usually rather unsteadily, and sit on the sofa listening to what’s going on around me, or if it’s quiet I might see if I can read a little.

I take more medication and listen as my Dad cooks dinner before eating that on the sofa. By now the pain is usually at it’s worse, as painkillers begin to wear off again and the effects of having done some housework in the morning begin to set in. The evening is usually spent curled up on the sofa resting or reading a book. I take my final lot of medication for the day a few hours before I get ready for bed.

Come 9:30pm I am usually ready to start getting ready for bed, moving a little slower than I have throughout the day but often fairly unsteady on my feet. I go to the bathroom and get myself ready for bed before Dad follows me up the stairs; thanks to the physiotherapy this task isn’t as hard as it used to be; but my legs are usually shaking as I go up there!

I settle myself into bed, write in my journal, take off my glasses, switch off the lamp and try to find the least painful position in order to try and fall asleep.

As with previous years post this is just an average day. Some days are worse, some are better. I adjust my activity levels and the aids I use accordingly. But this is the amount of activity I currently do each week day at least, unless the day is a bad one. The Covid-19 restrictions, including lockdown, have made pacing myself more difficult than usual – contrary to most people with more family at home than is usual there have been more demands on my energy than there is normally – but I’ve managed to adapt.

Looking back on last year’s post it’s heartening to see things have improved a little again; thanks to the new treatments I don’t get quite as dizzy, and it happens much less often than it used to. I’ve managed to pace myself despite the pandemic and the extra demands it put on my body and although thing’s haven’t improved drastically, they haven’t drastically worsened either! The continued physiotherapy hasn’t lead to much more in the way of improvement, in fact in recent months the stairs and any steps have become more of an issue as my legs shake and twitch. I’m the first to admit I’ve had to reduce my physiotherapy (and am slowly trying to build it back up) but the way my legs are is different to how they were previously when stairs were so difficult. That’s a little disheartening but hopefully it will improve again, and/or I’ll find out what the cause is.

Some things haven’t changed since last time though, so I shall quote from my post back then:

“…when people visit I always put on a brave face, an act so they don’t see just how bad the ME is. I don’t do this for my sake, but to protect them from the truth. There are some who see the ‘real’ me now but it’s taken a few years for me to ‘drop the act’ for them. And if they themselves are having troubles or stresses the ‘act’ of being better than I am and not letting on how bad I really am comes back to protect them. I don’t want to add to their worries.”

As always let me know your thoughts and comments either on Twitter @SmilingClare, Facebook Smiling Clare: A Life Within An Illness or add a comment to this post and I’ll reply when I’m able!

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