Living Life, Within the Limits of Chronic Illness

Author: Clare Page 1 of 56

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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Quietly Plodding Along

I have to admit I’ve been quiet of late, in part because I don’t know what to write about. But also because my life has become busier; more people at home more often, more housework as my Mum continues with caring responsibilities and more cancelled appointments to keep track of so that I know what to chase once hospitals return to more normal service. All of that uses more energy than usual.

There’s also a lot to be said about the uncertainty and anxiety that comes from living during a pandemic, that uses energy too. I never know what to post; should I try and be upbeat which is how I usually try and remain as much as possible? Or should I post the God honest truth of things?

Well this post is going to contain some of the latter, because I need to spill it out somewhere and here seems as good a place as any.

Like so many people, I found 2020 to be a hard year. But, I suspect I’ve found it hard for some very different reasons to most. I’ve essentially been shielding since March; not officially mind, and for the most part not by choice either. I’ve been “lucky” enough that my health has been so unpredictable, and at times poor, over the last 9 months that for the most part leaving the house hasn’t been of interest to me. Because quite simply I’ve barely felt well enough to be in the garden some days, let alone further out of the house. I’ve been out about 7 times since March, between August and September I think, and two of those were trips to hospital and emergency dentist.

Managing my medication during this pandemic has become something of a nightmare. I dread each time I have to request a prescription because it seems almost inevitable there will be a problem somewhere along the lines; from the doctors surgery claiming they can no longer prescribe something, to pharmacies requesting I change medication to something totally unsuitable and beyond. I’ve had to change one medication three times since the beginning of this pandemic due to shortages in supply, and each time it was changed they tried to swap it to something that does a similar job for its most common use, but not the job my consultant had prescribed it for so I had to do my research and put up a fight.

It probably won’t come as too much of a surprise that most medical professionals don’t like it when you know more about your condition and how it’s managed than they do.

I’ve also had to change pharmacy three times during the pandemic; each one I’ve been with has been unable to get one of my medications (a different medication with each pharmacy). And even now there are delays in getting some of them, but my current pharmacy has (thus far) managed to supply everything I need. So fingers crossed that’s one problem solved!

2020 started holding so much promise of progress in terms of learning more about how my body is (or should that be isn’t?) working, and trying things which could help get symptoms better controlled, thus improving my quality of life.

I know we are in unprecedented times. I know the NHS is under an enormous strain. But I have to admit with each cancelled appointment, with each referral (made before the pandemic began) I haven’t heard back about, a little bit of hope slips away, and bleakness slips in. How long will it be until I see one of my doctors again? How long will it be before we begin to understand just how my body works (or how it doesn’t work)? How long will I just exist here, with returning symptoms and worsening pain levels putting off trying to contact a doctor because they’ve probably got more important things to be doing or are probably overwhelmed with other patients for me to bother them with something I’ve actually had before, even if it hasn’t been this bad for a while?

That’s not to say things have been all bad on the medical front; one of my consultants has been working together with my general practitioner (GP) and I’ve started new medication to help manage the fainting and dizziness a bit better. And I’m happy to say that for the most part its working well. I still have bad days, or even bad weeks where I get dizzy very easily, but its nowhere near as frequent as it was before.

The only downside is it suppresses my immune system. I don’t quite know what that means for me when it comes to my risk of catching viruses and infections yet. I was hoping, given the current situation with the pandemic, I’d have been given some additional information about that, but alas thus far that hasn’t happened. Not that I suppose it matters too much anyway because as I say I’ve only left the house a handful of times in the last 9 months, and we’re employing our usual winter hygiene methods year round; I say usual because we always have to be extra careful during winter as I frequently pick up any bug that’s going round, doesn’t matter if I haven’t been out, no one else in the house has had symptoms or not, I’ll get it and it’ll knock me for six. Plus of course now my family are using masks when out and about as the guidance requires them to.

Despite all this, I’m still plodding along quietly. Drafting new posts for this blog as and when I’m able to, pottering about the house doing the little tasks I can to help my parents out, keeping my physiotherapy up as much as possible and generally keeping track of everything that’s been put on hold due to the pandemic. But quite honestly I’m getting fatigued more easily than I was, my pain levels are higher than they were and keeping everything going is getting to be a little bit too much. So things might be quiet here for a while, until I manage to figure out the new balance of things.

For now, stay safe and keep as well as you possibly can.

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2021 Goals

At the end of 2019 I posted a small paragraph in my 2019 round up post (which you can view here) with some things I’d like to do in 2020.

“As for 2020, there’s already 4 hospital appointments booked, here’s hoping they’ll all prove helpful! I’m also hoping to arrange meeting up with some more of the friends I’ve made online, health permitting on both sides of that one! To finish decorating my room and unpacking my stuff which has been boxed for two years now, as well as making it to the Christmas Carol Service at church, which is one thing I didn’t manage this year due to poor health.

Here’s to making the best of 2020, whatever it might bring!”

2019 Blog post

Little did I know at the time how meaningful that last line was going to be to everyone!

As for me, well I’ve made the best I can of 2020. Only 3 in-person hospital appointments, a few telephone appointments and numerous cancelled ones mean there has been little progress on the medical front. Unsurprising given the pandemic and the pressures the health service is now under. But the ones which did take place proved useful.

Of the other things I hoped to do, many have been impossible due to the pandemic; meeting up with friends I’ve made online, and attending the carol service at church have had to be put on hold. Perhaps they’re something I’ll manage in 2021 though, once the pandemic situation improves!

Despite having only left the house a handful of times over the past 9 months (I can count them on one hand!) I still haven’t finished decorating my room. However I have unpacked the boxes and started getting a bit more organised.

I’m reluctant to set any goals for 2021 at the moment; while it can be nice to have things to work towards and even look forward to, my health really isn’t all that good right now and combined with the uncertainty surrounding the pandemic I have no idea where to start. There are so many things I would like to aim for, or even say I’m going to do, but I know in my heart of hearts that with my health the way it currently is the chances of managing them is very remote. And I don’t want to be reading this back at the end of the year full of disappointment at what my health, and potentially the pandemic, prevented me from achieving.

So for 2021 I think I’m just going to aim to make the best of it and see what happens. Fingers crossed it will bring better things than 2020 did! I am going to try and document the good things throughout the year, both through social media, this blog and by keeping a good old fashioned list so at this time next year I can look through and see what I’ve managed to do.

Wishing you all a happy, healthy and most importantly safe, New Year! Here’s to making the best of 2021.

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Christmas & M.E

Well it’s that time of year again. The time where everyone wants to see each other, spend time catching up and having a good time.

It’s a time I always look forward to and dread in equal measures. And I’m sure I’m not the only person who feels that way.

As I write this I am propped up on the sofa with my feet up, under a duvet with boxes of Christmas cards scattered next to me waiting to be written.

You see, with ME or any other chronic illness there’s pressure to join in all the festivities. And I mean all:

  • Sending Christmas cards
  • Putting the decorations up
  • Christmas Shopping
  • Present wrapping
  • Carol services
  • Family parties
  • Visits from friends
  • Visits from family
  • Family get togethers; on all the festive days – Christmas Day, Boxing Day etc.

And there’s probably more I’ve forgotten to mention.

I know friends and family don’t mean to put pressure on to send cards or attend these things, they mean well and just all want to see you and catch up. But even if it’s unspoken pressure, it’s still there.

And it’s not just Christmas either, this continues to New Years Eve.

People forget what happens in the lead up to Christmas. Because they can cope with the extra work that comes with it, they don’t give it a second thought.

But for someone with ME, or other chronic illness, joining in with the preparations takes energy in itself. Just writing cards can be incredibly difficult due to fatigue and painful joints. (In fact this year I’m cheating and only writing who the card is from inside it due to pain making it difficult to hold a pen!)

By the time the actual event comes round energy levels are often lower than usual. Meaning joining in social events at home, let alone leaving the house can be quite a task.

Symptoms are often already flaring; fatigue will be higher than usual having used so much energy prepping for the big day. Then there’s the pain, the dizziness and whole host of other symptoms which arise.

And any further activity, however seemingly small, can cause them to flare further. The more they flare the longer the effects will last. So if I push myself to join in a get together one day, the flare up of symptoms will most likely last a couple of days or a week. If I push through that flare up of symptoms and join in another thing in the days that follow, that flare will not only last longer but the symptoms will be more severe too.

Sometimes pushing through is worth it for the memories it makes; life with chronic illness means there is almost always a price to pay for doing things. And if you’re enjoying yourself you tend to forget the time, so do things for longer than you probably should, meaning the “price”, in the form of increased symptoms etc., is higher than it would be if you’d paced yourself more. But as I say sometimes it’s worth it for the enjoyment you get and the memories you make.

This year is different in many ways due to the pandemic, however with the 5 days of the “Christmas Bubble” whereby you can create a bubble with two other households including your own, I suspect there will still be some of that pressure there. I know that although we don’t have any plans fully formed in my family yet, there will be a meal with our “support bubble” at least which will be enough to wear me out. Especially given how iffy my health is being right now; it’s not a full blown relapse or anything like that, but symptoms are already flaring, old ones returning and moving round the house is becoming increasingly difficult.

I know for many this restriction on the number of households that can mix in a “Christmas Bubble” will be a relief, because some of the pressure that comes with the festivities each year will be reduced as a result. And there is no need to feel guilty about that. It is perfectly okay to feel that way, and it’s perfectly acceptable to set boundaries too, especially if you don’t feel comfortable mixing with anyone outside your household during this time. You do you, and do whatever you feel comfortable with in that regard  (providing its within the law!).

I hope wherever you are and whatever you do for Christmas this year, you enjoy yourself, your family are understanding and you can pace yourself as well as the festivities allow.

Happy Christmas and stay safe x

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