Living Life, Within the Limits of Chronic Illness

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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2 Comments

  1. Debbie Sturgess

    Hello Clare,

    Thankyou for sharing, I appreciate the effort of not only typing but collating your thoughts in the first place.

    I’m heartened to hear you talk about coming out of lockdown, I feel the same way, for a while most people had to live in the bubble I do daily but now they get to eacspe that bubble and I don’t.

    I’m managing my frustrations on this front but it felt like my bubble was sticking it’s fingers up at me and saying, “but you don’t get to escape sucker!”

    My younger son, he’s 28, a high flyer living the dream thinks it’s all in my head and I just need to have positive thoughts 🙄 he’s basically turned his back on me and we have no contact now, I couldn’t cope with his rejection of my weakness. Yer, go figure!

    Every day is a triumph because I get through it.

    A Life Coach recently asked me to tell him how my day started. Pretty much like yours, my eyes open, My brain assesses in milliseconds how it and the rest of my is feeling at that point and I calculate what I reckon I’ll be able to achieve in the day. I haul myself out of bed and the day begins. Sometimes I’m up and about in 30 minutes other days it takes 2 hrs. But I’ve learnt to pace and not to get frustrated if I have a slow day. The Life Coach just said, and that’s before you get out of bed and I’m like yer, 🤔

    My lodger is a local doctor and to say he’s had a short sharp induction to a day in the life of M.E. is an understatement 😉 He’s become emphatic, picks up on my status and I’ve taught him to cook from my resting place on the sofa. Only so much of his rice and fish I could eat 🙂

    Like you say, why would we want people to see us at our worst, why would we want to concern them and add to their worries.

    The Life Coaching is helping me recognise that I’m still a person and I get glimpses of the real me which is heartening, would just like the glimpses to become a reality.

    Debbie x

    • Clare

      Hello Debbie,

      You’re welcome, I have to admit this year it was touch and go whether I’d get this post finished in time for ME Awareness Day as there’s been a lot of demands on my energy lately! But I did it, and it’s lovely to hear from readers like you and I appreciate the effort that goes into commenting like this.

      I am both sorry, and heartened that you can relate to how I’m feeling as we exit lockdown; it’s nice to know I’m not alone in feeling that way. I’m managing my frustrations too, but it does feel like my bubble is doing the same as yours!

      I honestly don’t understand how those closest to us can think like that, I am so sorry he’s turned his back on you, that must be really hard.

      I’m always amused when people are surprised by what I do before I get out of bed – for me now it’s normal, I can’t imagine just being able to jump out of bed and get on with the day (actually I did do it once when hospital transport turned up earlier than expected and I was still in bed…let’s just say that day didn’t go too well!!) I’m the same in terms of pacing and learning not to get frustrated, well not too frustrated anyway!

      I am glad you’ve got a good lodger and hopefully his short sharp introduction to a day in the life of M.E. will help him be an understanding doctor should he come across M.E. in his work.

      It is lovely to hear that life coaching is helping you recognise you’re still a person and you are getting glimpses of the real you. I think it’s something we all lose sight of with this illness, when I think about it I’m not even sure I know what the real me is any more because I became ill with M.E. aged 12 I was at that point where you’re still growing into the person you will be. I hope some day soon those glimpses might become a reality for you, but in the meantime treasure those glimpses & keep smiling.

      Clare x

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