Living Life, Within the Limits of Chronic Illness

Author: Clare Page 1 of 60

Goodbye 2023

Well I’m posting this a little later than intended. Honestly I don’t quite know where my energy keeps disappearing to, but it seems managing on my own and the day to day tasks alongside hospital appointments leaves little energy for much else – that’s despite my parents coming over to help a few times a day!

But anyway, 2023 has been quite a year with several huge things happening. At the end of 2022 I knew major surgery was on the cards for this year however I had no idea moving out of my parents would be on the cards too. Let alone that it would all pretty much coincide with one another! It’s been a bit of a tough year with several trips to A&E alongside the move and surgery. There’s been a lot of learning to do as well; it turns out you learn a lot about what you can and can’t easily manage (and how much you relied on living with your parents) when you move out! Overall though it’s been good, living all on one level is proving a lot easier even with the additional things which come with living on your own.

Despite all the challenges I’m classing 2023 as a good year –

  • I got an accessible flat close to my parents, albeit not fully accessible so I’m having to get adaptations done but I think I would’ve been waiting forever if I’d waited for something perfectly suitable! With help from friends and family we have decorated & furnished it, and generally made it liveable (If you’d seen the state it was in when I viewed and accepted it you’d know that was a lot of work!)
  • I’ve had major surgery which has hopefully fixed my kidney; I say hopefully as I don’t get the post-op scan results until I see my surgeon in the new year, but given I’ve not been in agony with kidney pain, or had a urinary tract infection since the surgery I’m assuming it must have been a success!
  • I’ve continued with physiotherapy, with a break for major surgery of course, and it seems to be paying off – things are getting slightly easier. It’s still only a tiny bit of movement each day & very slow to build up but it is helping.
  • I was referred to another consultant (in addition to the many others!) and they were very understanding and actually listened to me. We hope together we can come up with a plan which helps better manage my pain levels.

Going into 2024 I already have 4 hospital appointments booked, 3 in January alone. But I’m hoping I might finally get round to editing and posting the many posts I have drafted from 2022 which I didn’t get round to doing this year what with everything that has happened. I also hope to start blogging more regularly and perhaps even give the site an overhaul design-wise! Otherwise the aim is to just appreciate every moment which feels nice at the time, and doesn’t involve medical appointments!

Anyway I’m going to leave it there, I hope you all had a lovely festive period with lots of enjoyable moments and that 2024 is kind to you!

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Major Surgery and Me

Well it’s been a dramatic few months, from moving into my flat fully on ME Awareness Day, having my stent removed a week later, landing in A&E at the end of May, to finally having much needed major surgery at the beginning of June and more drama in between!

So it’s safe to say it’s been a while – the last time I blogged I was just about to move in to my flat, and now unbelievably I’ve been here four months, and to say things haven’t quite gone to plan would be an understatement. 

The move itself went smoothly, but unsurprisingly I crashed 24 hours afterwards and one of my parents had to come to stay with me for a few nights. Four days on from that crash I had to have my ureteral stent removed ready for major surgery 3 weeks later. That went well, although within a week I was getting a lot of kidney pain, so much so I needed someone to stay with me again. 

Fast forward a week to the end of May, and the pain was unbearable. I made it to my GP who gave me antibiotics in case it was an infection, and increased my pain meds. However that evening it became a lot worse and I was unable to eat or take the meds as the pain was so severe it was making me physically sick. My Mum rang NHS 111 while I lay on my bed struggling to stay conscious because the pain was so bad. They wanted to send an ambulance, however ambulance control said it was going to take 6 hours or more for an ambulance to arrive so it would be best if we could get me into the car and get me there ourselves. How my parents did that I do not know, I can remember screaming/groaning, feeling sick and dizzy with every slight movement as I got into my wheelchair, every bump in the path or road and when getting in/out the car! That felt like the longest journey ever. 

Once at A&E I was triaged pretty quickly and given some much needed pain relief before waiting for blood tests, anti-nausea medication and to be assessed by a doctor. I had to have a CT scan before I was discharged at 2:30am with more antibiotics, anti-nausea tablets and very strong pain relief. They concluded I had a slight infection but ultimately it was just a case of my kidney failing to drain now the stent was out. So all they could do was try to manage my pain until my surgery date the following week and they’d rather do that at home than in hospital. Although I was made to promise I would keep that all important appointment the following week – to be at Theatre Admissions by 07:30am – to be honest it wasn’t much of a decision to make as it was the only way to get rid of this unimaginable pain!

The morning of June 8th was possibly the most nerve-wracking of my life. Waiting to go down to theatre on my own, with the words of the anaesthetist going round my head – “if your heart rate or blood pressure become too unstable and we’re unable to stabilise them we might have to abandon the surgery” – everything was a bit of an unknown as it was my first ever major surgery, and we didn’t know quite how my faulty autonomic nervous system would cope. 

As it turns out it has surprised us all and coped a lot better both during and after the surgery than any of us expected. My surgeon found a “big fat artery” crossing my left ureter, virtually crushing it which is why my kidney wasn’t draining without the stent holding it open. He rerouted my ureter around the artery to resolve the issue. 

The first words I remember saying when I came round are “Did it go ok?” – I had been so worried they might have to abandon the surgery after seeing the anaesthetist that morning, it was such a relief to hear them say it had gone to plan!

Now comes for the surprise bit – I stayed in recovery for quite a while as they couldn’t find me a bed on a ward until the evening, but not overnight like the team had expected because my blood pressure, heart rate etc were all stable.

I was moved to a ward in the evening, and my parents came to visit for a short time which was lovely. And I managed to get some sleep overnight as well – the pain from surgery was a lot less than it had been in the week leading up to it! Whether that was because it was better managed or just because the pain had been so severe prior to it I don’t know. The next morning my surgeon came to see me and his first words were “You’re looking well, I think as long as the catheter and drain come out okay, you can go home today”. 

And everything did go okay. The only delay was waiting for my prescription of strong pain meds and blood thinning injections to arrive on the ward so I could be discharged. That was a painful wait as well because it was so long I was due more pain relief but the ward couldn’t give me anything because my medication card had been sent to pharmacy to fill the prescription! But it still wasn’t anything like the pain I was in before having the surgery.

So began my recovery at home. The first week was a bit of a rollercoaster, with little things causing big worries because we weren’t entirely sure what was normal and what wasn’t, and of course being discharged on a Friday evening there wasn’t a lot of support available over the weekend either! But we got through okay, and as I say my body has handled it all much better than we expected. 

Fast forward to seven weeks post-op and I returned to hospital to have my stent out under local anaesthetic. That went smoothly – a lot more smoothly (and less painful) than the previous one! And so far, now 6 weeks on from that I am still doing well. My parents have been amazing, taking it in turns staying with me for the seven weeks while I recovered from surgery and wasn’t allowed to do a lot of things.

11 weeks post-op and we had another dramatic day, this time something just gave in my hip as I got up from my sofa on a Saturday night – the first night my parents had gone out to a party in a long time – I managed through the night but had to call on my Mum to help me out of bed the next morning because every move was agony. And once again I ended up in A&E in my pyjamas, only this time it was by ambulance! X-rays showed my hip joint itself was fine, so they suspected I had torn a muscle. I was discharged in the afternoon on pain relief and my parents once again took turns staying with me until I was able to get up out of bed on my own and didn’t need a walking frame to get around. Thankfully almost 3 weeks on and it’s a lot, lot better than it was although I am still sore even with pain relief and having to be very careful.

So all in all this year has definitely been a dramatic one so far – I can’t believe it’s September already! – in many ways things have been a lot easier than expected. But that’s not to say this hasn’t been hard on my body – it really has – however I’ve not felt anywhere near as rough as I expected to and for the most part my symptoms from my chronic illnesses haven’t been as bad as expected either. There have been tough days, and everything is very much a very careful balancing act of pacing right now. It doesn’t take a lot to push me from a “manageable day” to “overdoing it”, so it all has to be carefully planned. But I’m getting there, and that’s the main thing. Hopefully now things will settle down and I might be able to get back to blogging a bit more (this post has been in the making since the beginning of July so it might still be slow going!)

 

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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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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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