Living Life, Within the Limits of Chronic Illness

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A Day in my Life 2023

Well it’s that time of year again; time for my annual day in my life post for ME Awareness Day. I’m actually writing this 3 days prior to May 12th again this year which I used to consider somewhat late for me but it seems to be becoming a habit! 2023 has been proving another challenging year, but anyway here we go:

I wake around 07:55am, 5 minutes before my alarm sounds. I feel unrefreshed, as though I haven’t slept as much as I have. I slowly sit myself up, shuffling back against the pillows and assessing the pain levels. I reach for my phone and open the Visible App, completing my morning check-in (This is an app which gives you a morning pace score based on your input of symptoms and heart rate variability, I’m actually finding it quite useful). I then slide my feet round and down so I’m sitting on the edge of the bed, I sit that way for a few seconds making sure I’m not about to get too dizzy before reaching down and gently waking my dog Dolly, unless she’s already up and at my bedroom door. I grab my slightly oversized hoodie and put it on.

At 8am I turn the alarm off, get up from the bed and slowly make my way downstairs, a little unsteadily, holding on to the rail for support. I use the bathroom, put fresh water and biscuits out for Dolly, then get myself a bowl of cereal and drink of squash before seating myself in the riser recliner chair to eat breakfast and take my medication.

I have a short rest after breakfast, before getting a pair of compression socks from the suitcase in the utility room (my downstairs, mini wardrobe) and putting them on. I rest for a little longer, usually until about 9am before getting up and going to the utility room to choose clothes from the small suitcase in there. I then go to the bathroom and slowly dress from a seated position, before cleaning my teeth. I slip some shoes on and often a jacket before letting Dolly out for her first wee, if she’s not already demanded to go out – she doesn’t like going out in the garden on her own, before I make my way back to the living room. I sit on the floor with Dolly on my lap to wipe her eyes with wet cotton wool and brush her.

By now it’s usually 10:15am, I spend most of the morning trying to do little bits of medical or life admin from the recliner chair, getting up and moving a little once an hour, watching a bit of TV or doing a bit of knitting; all depending how my concentration is.

Around 12:30pm my Dad comes in from work and we get all get lunch. I take some more medication just after lunch. The afternoon is often spent across at my flat, supervising work to get it ready for me to move in, waiting for deliveries or slowly unpacking some of the boxes I already have across there. All punctuated with regular rests on my recliner over there.

Come 3:30pm and I’m usually starting to flag, the left side of my back is usually starting to ache as well, I tend to take on more of a supervisory role if we’re at my flat, I’m usually quieter, observing what is going on and listening to conversation rather than joining in quite as much. We tend to be back at my parents by 4:30.

At 5pm I get Dolly her dinner and sit listening as my Dad cooks our dinner, which I then eat while sat in the recliner chair in the living room. The evening is usually spent curled up on the recliner, resting, watching TV or reading if it’s quiet. I scoop Dolly up onto my lap and clean her teeth with a special finger pad. I take the final lot of medication for the day an hour before getting ready for bed.

Around 9:30pm I am usually ready to start getting ready for bed; I move a little slower and am unsteadier on my feet than I have been during the day, but I get to the bathroom and get myself ready for bed before my Dad helps me up the stairs. I close my curtains before putting some socks on Dolly while Dad holds her (she has a tendency to scratch and these prevent her from hurting herself while I sleep). Dad removes my compression socks before leaving me to settle myself into bed.

I write in my journal, switch my alarm clock to “sunset” mode and sit and read until the light is too dim to do so. At that point I take my glasses off and put them in the case before snuggling down to find the least painful position in order to try and fall asleep, this can be particularly difficult as my ureteric stent becomes painful in certain positions (like laying on one side or my front), but irritates my bladder to the point of insanity in other positions (like laying on the opposite side).

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. This year’s average day has been a difficult one to write because I’m still not in my usual situation; I am in the process of moving out of my parents into an accessible flat, in fact I should be moving in fully on May 12th just as soon as my new adjustable bed arrives! (I’ve not been able to move in fully before that as I still need help sitting myself up in bed some days, so can’t risk getting stuck in a standard bed when living on my own). I am also preparing for major surgery at the beginning of June (providing it goes ahead). So as you may have noticed, physiotherapy has become a bit absent from my average day simply because I’ve had to prioritise packing & organising things for my move, which as my physiotherapist says – still counts!

Looking back at last year’s post is actually quite strange, in some way it seems like a lifetime ago but in others it seems like just yesterday. It has been a difficult year of adjusting to a new normal, lots of hospital appointments, lots of medical admin and coming to terms with not only needing major surgery but the higher risks that come with having underlying conditions. Learning that for an average person they expect a 48 hour hospital stay and 3 month recovery time, but that I will probably require a week long stay, (probably overnight in recovery for close observation) and 6 month recovery time is quite a lot to take in.

It’s heartening to see how much things have improved since last year; at the time it seemed as though there was a very long road to getting back to my baseline, although it did take me quite a long time (and I’m still not back to where I was pre-surgery) I have come a long way from how I was a year ago and am managing a lot more than I could. I’m not sure where I’ll be next year, I’m certain things will be different as I will be living on my own, with regular visits for help. And I can only hope that I bounce back as quickly from the upcoming major surgery as I did for the more minor one I had last year, and that I defy the medics expectations in terms of how badly it will affect my underlying conditions. But I am preparing for it to be a tough time, and long recovery.

Some things haven’t changed since last time I wrote a Day in my Life post 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.”

This is particularly true when things are proving especially tough, like after my discharge from hospital last year, and most likely after this year’s surgery when it happens.

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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A Day in my Life 2022

Well it’s that time of year again; time for my annual day in my life post for ME Awareness Day. I’m actually writing this 3 days prior to May 12th this year which is somewhat late for me, but 2022 has been proving quite a challenging year thus far so that’s the way it is.

I wake around 07:50am, 10 minutes before my alarm sounds, but just as the wake up light starts coming on (I have one of those sunrise/sunset alarm clocks now which I find helps with waking/going off to sleep). I feel unrefreshed, as though I haven’t slept as much as I have. I reach for the bed ladder and pull myself into a sitting position, slowly shuffling back against the pillows and assessing the pain levels. I reach for my slipper socks at the side of my bed and slip them onto my feet before having a long drink of water from the cup on my bedside table. Then slide my feet round and down so I’m sitting on the edge of the bed, I sit that way for a few seconds making sure I’m not about to get too dizzy before reaching for my cardi-gown (it’s a cross between a cardigan and a dressing gown) and slipping it on.

At 8am I turn the alarm off, get up from the bed and slowly make my way downstairs, a little unsteadily, holding on to the rail for support. I use the bathroom, then get myself a bowl of cereal and drink of squash before seating myself in the riser recliner chair to eat breakfast and take my medication.

I have a short rest after breakfast, before getting a pair of compression socks from the suitcase in the utility room (my downstairs, mini wardrobe) and letting my Dad put them on me. I rest for a little longer, usually until about 9am before getting up and going to the utility room to choose clothes from the small suitcase in there. I then go to the bathroom where my Mum helps me wash and dress, before leaving me to clean my teeth. I slowly make my way back into the living room where I do a little bit of physiotherapy; 6 strengthening exercises, before having another rest.

By now it’s usually 10am, I spend most of the morning trying to do little bits of medical or life admin from the recliner chair, getting up and moving a little once an hour, watching a bit of TV or doing a bit of knitting; all depending how my concentration is.

Around 12:30pm my Dad comes in from work and will get me a packet of crisps before getting me lunch. I take some more medication just after lunch. The afternoon is often spent chatting to Mum & Dad if they’re around, or if my legs and energy levels allow (and the weather is nice) I’ll sit outside in the garden chatting to them or my neighbours instead.

Come 3pm and I’m usually starting to flag, the left side of my back is usually starting to ache as well, I have help getting back into my pyjamas and then either sit in the recliner chair or lie down out in the garden until around 4pm. I’m usually quieter during this time, observing what is going on and listening to conversation rather than joining in quite as much.

At 5:30pm I take more medication and sit listening as my Dad cooks the dinner, which I then eat while sat in the recliner chair in the living room. The evening is usually spent curled up on the recliner, resting, watching TV or reading if it’s quiet. I take the final lot of medication for the day an hour before getting ready for bed.

Around 9:30pm I am usually ready to start getting ready for bed; I move a little slower and am unsteadier on my feet than I have been during the day, but I get to the bathroom and get myself ready for bed before my Dad helps me up the stairs. My Dad usually closes my curtains for me as I sit myself on the bed before getting my legs up onto it too. He removes my compression socks before leaving me to settle myself into bed.

I write in my journal, switch my alarm clock to “sunset” mode and sit and read until the light is too dim to do so. At that point I take my glasses off and put them in the case before snuggling down 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. This year’s average day has been a difficult one to write because I’m not in my usual situation; I’m still recovering from having emergency surgery to fit a ureteric stent two weeks ago, when I also had a severe kidney infection.

Therefore looking back at last year’s post is actually quite difficult; I was managing so much more back then, and if I had written this post just over two weeks ago it would look very different to what it does today because I was managing similar amounts of activity to what I was last year and needing a lot less help with washing/dressing etc. However the severe infection, combined with the 9+ hour wait in A&E and emergency surgery have wiped out all that. In fact it is only today that I have added the tiny amount of physiotherapy back into my day; I’m hoping it will be part of my average day again and that I will be able to start building it up again too, but only time will tell.

So although it is rather disheartening to see things have declined so much since last year, there are some very good reasons for that which aren’t solely down to the ME, hEDS or PoTS – I’m hopeful things will pick up as I continue to recover from the events of the last two weeks (although further surgery will be needed at a later date, and I don’t know how that will affect me either).

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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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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A Day in my Life 2020

Well I never thought I’d be writing my annual day in my life post with the country in lockdown, and the majority of the population getting to experience what it’s like to be mostly housebound. Although they still have an advantage over what my experience of being housebound is; energy to do things to keep them occupied. I have to admit I’ve found it a bit tough in recent weeks seeing what everyone else is managing to do at home during lockdown, when my life has barely changed and I still only really have the energy for the basic things. But hey ho, you know you’re chronically ill when the country goes into lockdown and you barely have to change a thing about your life!

Anyway, back to what this post is supposed to be. For the last 7 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 to the sound of the landline phone ringing, 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 and get out of bed, making sure not to do so too quickly so that I don’t make myself dizzy. I sit on the edge of the bed getting clothes out ready for later in the morning.

At 8am I make my way down the stairs, fairly steadily, holding on the rail for support. I use the bathroom 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 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 because once dressed I have compression socks on (as recommended by my cardiologist) and I find they dig in if I do my physio in them.

I gather up any dirty washing and take it downstairs with me where I put it in the machine along with any other laundry that’s in the wash basket before setting the washing machine going. I often have a little sit down and rest before tackling the washing up of the breakfast things, usually sitting on my perching stool while doing so. I leave the things I’ve washed up to drain on the drainer as I can’t manage both washing up and wiping up!

Now it’s time for cuppa! I make myself and often my sister a cuppa using my one cup hot water dispenser before sitting down 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 it on the airer straight from the machine, 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, and some more medication. 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, sister 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 and do my second, and final, lot of phsyio for the day. I am then back on the sofa ready to watch the daily government briefing about the pandemic at 5pm, and stay there long after it has finished and the TV is off.

I take more medication and listen as my Dad (and/or sister) cook 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 until the phone rings with our evening phone call from my Mum.  I often end up taking my final lot of medication for the day during this call.

Come 9:30pm I am usually ready to start getting ready for bed, moving a little slower than I have throughout the day but still fairly steady on my feet despite the pain. 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, and I get up there without too much unsteadiness!

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. Lock down has made pacing myself that little bit more difficult as I have to do more of the housework with my Mum staying over at a relatives to look after them.

I don’t know what the impact of this will be on my health in the long term, I am trying my best to create a schedule which allows me to pace myself better than I was when this all began in March, and my Dad does what he can to give me time to rest, particularly at weekends. But obviously this is harder on my body than things would usually be if there wasn’t a pandemic; even if I could go out I wouldn’t be able to due to the amount of energy I’m using keeping the house tidy and laundry up to date. I also know that this current level of activity on an average day isn’t sustainable long-term, I’m just struggling to come up with a way round it. I hope that I will find the right balance and things will get even just a tiny bit easier soon.

Looking back on last year’s post it’s heartening to see things have improved a little again; thanks to the new diagnoses and resulting treatments I don’t get quite as dizzy, quite as often; I still have to be very careful not to change positions too quickly and if I don’t have compression clothing on the dizziness can be quite bad but it is still an improvement. And the physiotherapy is helping with muscle strength and means my ability to manage the stairs is so much better than it was; yes I still have bad days where it is as difficult as it was last year but they are fewer than they were. It still takes it out of me too, but it isn’t as difficult as it was. So it’s all fairly positive!

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.”

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