Living Life, Within the Limits of Chronic Illness

Author: Clare Page 2 of 60

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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The End of 2022

To say this year hasn’t gone as I expected would be an understatement. From unexpected test results in January, to an emergency hospital admission in April, to adopting a dog in June, to waiting for major surgery since August; none of that was on my radar as 2022 began. But I have survived, taken it all in my stride & coped surprisingly well for someone who doesn’t like needles, blood or hospitals. In March we also lost my Grandad, something that wasn’t totally unexpected but was difficult all the same. 

There have been some good things though; obviously adopting Dolly dog has got to be the absolute highlight of the year; a childhood dream come true and I honestly can’t imagine life without her now. In September I celebrated my 30th birthday in style; by spending a week on Mersea Island with my family, some close friends & Dolly dog of course! My health wasn’t brilliant and I spent most of my time in the accommodation but it was a lovely change of scene and with the beach so close I was able to enjoy some gorgeous views on short trips out.

Christmas is proving to be a challenging time; the first one without my Grandad, the first one we’re planning to have at home on our own in I don’t know how long, the first (and hopefully only) one with me coping with constant discomfort (and sometimes a lot of pain) from a ureteral stent and the first (and again hopefully last) one while still waiting for major surgery. I’m also recovering from a tooth abscess & subsequent antibiotics & root canal treatment; the final part of treatment is in the new year. All of that has made it difficult to get into the festive spirit, but I’m sure we’re going to make the best of it, as we always do.

This year has been a tough one to say the least, and this poor blog has been sorely neglected. There are so many draft posts I’ve started but not finished, some from last year! I just haven’t had the energy or cognitive function to finish & publish them. I’m hoping that in 2023 I can find my way back to regular blogging & perhaps even update the whole site a bit too. Although I guess that’s all dependent on when I have surgery & how my recovery from that goes; 2023 could be spent getting back to baseline, only time will tell. 

In the meantime I want to wish you all a very Merry Christmas and all the best for 2023. I hope you all manage to have many enjoyable moments over this festive period.

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Another Milestone Birthday

Earlier this week I posted a tweet with a list of things I’ve never done

I later returned and added a few other tweets about my life:

And to be honest I was overwhelmed with the response I received (You can see the thread of tweets here: https://twitter.com/SmilingClare ). I wasn’t expecting anything like the number of likes, retweets and replies, let alone new followers, I received all from sharing an honest list of things I’ve never been able to do.

Back in 2014 I wrote a similar blog post reflecting on my life as a 21 year old compared with what I’d always imagined my life as a 21 year old would be like, and this years tweet was posted in a similar vain. Approaching yet another milestone birthday I can’t help but think about how different my life is compared with how I always imagined it would be; for me I’ve always hoped that by the next milestone birthday my health would be better – to begin with in those early years of illness it was always “I’ll have recovered by the time I’m 18”, then “I’ll be a lot better, if not recovered by the time I’m 21” – and although I have accepted my illnesses are always going to be present, and I’m never going to fully recover, I always hope that by the next milestone birthday I will be living a more ‘normal’ life but alas that isn’t the case this time.

Unfortunately many of the things I hadn’t done at the age of 21, which most people would have, I still haven’t been able to do. There’s still no parties/going out to the pub for me; I can’t cope with the noise, the lights, the crowds. Alcohol is almost a complete no go, I’ve never been able to drink much but now it not only makes symptoms worse but also interacts with some of my medications. I rarely go out anywhere other than hospitals, and when I do it’s only to local places at quiet times. Again going places when it’s crowded although possible makes me very ill afterwards. I still haven’t learned to drive because I don’t feel like it’s safe for me to do so; having passed out in the passenger seat before it doesn’t seem like a good idea – I don’t even know if I’d be allowed to because of that.

While all my old friends now have jobs, relationships, are getting married, have moved out and are even having kids, I’m still stuck in much the same place as I was before. With so many regular hospital appointments I don’t have a lot of energy left in the tank to do the basics, let alone have a job as well. I had planned to get on a dating website this year, but once again my health & the dramas that it’s brought me this year have prevented me from doing so, which means no relationship is in the offing. I am looking for an accessible home to be able to move out of my parents house & have some independence BUT that’s no mean feat in itself, and I’ll require some support when it does eventually happen. As for kids, well there’s a dream I think will never come true, I always imagined myself being a Mum but I can’t imagine managing having a child even if I was in a relationship. Not with my health the way it is; it wouldn’t be fair on them or the kid. My life is still a far cry from the one I pictured I’d be living, and the stark reality of that is sometimes hard to stomach, but for the most part I make the best of things and I’m happy.

I think it’s important to point out that I don’t begrudge any healthy people of all they can do. For making the most of their lives. I admit, I occasionally feel a little bitter and sorry for myself that I can’t do all a healthy person can. Especially if it’s something I dream of doing. But for the most part I’m happy for them. They have the abilities and opportunities I’ve been denied through no fault of my own, and they’re making the most of them. That’s the way it should be. I don’t want my friends to feel they can’t discuss their lives with me, at times their stories are my only connection with a ‘normal’ life. I don’t blame them for excluding me from events because they realise I won’t be able to cope with it.

As I approach my 30th birthday this year I am preparing for major surgery to reconstruct my left ureter where it’s partially obstructed. I’m just thankful that it seems I will get to make the most of my birthday before the surgery, rather than while recovering from it. I’ve been warned the surgery will set my health back a lot because I have so many comorbidities, and that I am also at high risk of complications because of them. In fact as I type this although I am on the waiting list, there is still a bit of a question mark over whether I can have the surgery as we’re waiting for my cardiologist to give the go ahead. So I’m busy getting things organised for the next few months so I am prepared for if/when my cardiologist gives the go ahead and I get a date for surgery. It’s not quite how I envisaged the lead up to my 30th birthday but then again this whole year hasn’t exactly gone the way I envisaged it would either. However I’m determined to make the best of things, there will be quiet celebrations on my 30th birthday and I will try to forget about the upcoming hospital appointments, admission and major surgery at least for that day. Thankfully my birthday is on a Sunday this year which should mean no post that day and therefore no hospital letters arriving in the post to ruin my day!

Here’s hoping that this next year sees less hospital appointments and some benefits from new & continuing treatments which will hopefully further improve my quality of life. So here’s to turning 30 in a few weeks time and whatever my 30th year may bring!

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Introducing Dolly

Well to say 2022 hasn’t gone to plan would be an understatement, I had so many plans to review draft posts and actually publish them, yet we’re now over halfway through the year and alas it still hasn’t happened. These past few months have been a sea of hospital appointments and a continued slow recovery from my emergency hospital admission at the end of April. However one dream has come true this year, something we had been planning to do for a little while and finally got the chance to do in June – we’ve adopted the most gorgeous dog!

Introducing Dolly, an 8 year old Morkie (Yorkshire Terrier Maltese cross) with a lot of character and even though we’ve only had her a short time none of us can imagine life without her!

The face and front leg of a black and tan yorkshire terrier maltese cross dog, being cuddled. Under her front leg is the white arm of Clare.

Dolly is a little ray of sunshine on those more difficult days, and provides a wonderful welcome home from the many hospital appointments I currently have. Ultimately she is supposed to be my dog; I feed her, brush her and she sleeps in my bedroom. The only thing I don’t do is take her out for walks – that’s my Dad’s job – and it seems she absolutely adores him no end, in fact she tends to be more excited when he’s around the house (and follows him) more than she does me! It’s still early days but she is settling in really well.

Overall despite the sea of appointments it seems as though things are going well with my health; I’ve had my long awaited neurology appointment and I am undergoing more tests to investigate possible nerve abnormalities, particularly in regard to autonomic dysfunction. I’m still doing my physiotherapy too, very carefully and with more rest days/less of it than before my hospital admission but it’s slowly getting there (Thankfully Dolly hasn’t shown any interest in trying to ‘help’ with my pilates style exercises, at least not yet!). In terms of the kidney which landed me in hospital, I have appointments in the coming weeks to discuss the possibility and risks of major surgery to correct the partial obstruction which caused my admission. So although there’s not much improvement in my health, we are at least on the path to learning more about my body, how it’s working and how best to manage it all.

The prospect of having major surgery, as the surgeon described it, is very daunting. It’s not the only option we have, but it is the only option which definitively solves the problem meaning there shouldn’t be a repeat of what happened in April. So I’m waiting to see an anaesthetist to be assessed before seeing the surgeon again and making a decision. All this means that most plans are up in the air; we can’t make any big plans because I might have important appointments, be having the stent removed or even having the surgery etc. So being able to adopt Dolly has been the absolute highlight in this tough year so far. And if I do have the surgery it’s nice to know there will be (hopefully gentle) cuddles from her to look forward to when I get home and in the months of recovery.

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