Living Life, Within the Limits of Chronic Illness

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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: ). 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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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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Give Me A Break!

Honestly right now life feels like a merry-go-round of health problems and I wish I could make it stop and get off the ride!

It’s been non-stop this last few months with appointments for tests, physio, occupational therapy, annual reviews and both routine and emergency GP appointments. I’ve been lucky to get a week between appointments, in fact one day I had two appointments in one day; and one of those was on the phone in the back of a transport ambulance on my way home from another hospital appointment – definitely a first!! It has been quite an exhausting time.

There’s also been a lot going on in my family, meaning at times my Mum hasn’t been at home at all to help me, so it has all fallen to my Dad and sister. Obviously it would be during one of these times that I became very unwell and my Dad had to take time off work to look after me and take me to the doctors. It turns out a kidney infection is very painful, makes me feel really unwell and really knocks the stuffing out of me. I was given the strongest antibiotics they can prescribe in the community and told if I didn’t feel any better or got worse in 48 hours I should go to Accident & Emergency. Thankfully I did start feeling a bit better and avoided a trip to hospital, but it has left me utterly exhausted.

Four weeks on from that kidney infection and I spent one Saturday night in agony. I got up at 6:30am because there seemed little point staying in bed unable to sleep because of the pain. We rang NHS 111 early that morning and were given an appointment with the Out-of-Hours doctor at my local hospital. They were concerned given my history; the back pressure they found in my kidney back at the beginning of the year, and so I was sent to Accident & Emergency (A&E). There I spent the next 9 hours, with no pain relief or my usual medications (I foolishly hadn’t taken them with me as I genuinely did not expect to be at the hospital long). I had bloods taken, provided a urine sample and was then sent for a CT scan. I wasn’t at all impressed by the nurse taking my blood; I warned them I have a tendency to faint (it seemed important given I was already having dizzy spells just sitting in my wheelchair in the waiting room!) and their response was “Well you’re sitting down you can’t go far”, kudos to my Dad who held me up and then managed to move to shift my feet so he was cradling those at hip level until I felt less likely to faint after the blood test! It took about 3, maybe even 4 hours after that CT scan before we saw the doctor again. In that time I was sat in my wheelchair in the waiting room, in an awful lot of pain, shivering/shaking, getting dizzy and struggling to stay conscious. At one point I had tears streaming down my face, it was all just too much.

When I was finally seen again, I was told I needed to be admitted for IV antibiotics as my infection markers were high, and that I’d be seen by urology. I then had another long wait in a different waiting room before finally being sent to a room with a couch I could lie down on while they put a cannula in and started IV fluids. And then waited for the urology doctor to arrive; when he did I think things moved quite quickly – my memory is rather hazy by this point, I remember laying there with Dad holding my hand telling me he wasn’t going anywhere and that I could close my eyes and rest, as I was struggling to keep my eyes open – I was admitted to a ward at 8:40pm that night.

My first ever hospital admission. My Dad went home to get me some pyjamas, my medications etc. and seemed to be back in no time at all with my Mum who hadn’t seen me since that morning. I was hooked up to IV antibiotics and paracetamol, given a anti-clotting injection, had a covid test and a test for MRSA as well before one of the nurses helped me into my pyjamas. I was nil by mouth, as they planned to do surgery the next day. My temperature spiked again during the night which meant more blood tests, cool compresses & my vitals being checked more often. I can’t fault the night staff that night, they were brilliant.

The next morning I saw the urology team; I had severe hydronephrosis (meaning my kidney was very swollen) and an infection. The theory was that the original kidney infection had never fully cleared, the antibiotics had dampened it down but as soon as I stopped taking them the infection could ramp back up because there was still infected urine in the kidney which couldn’t drain away. Essentially my kidney was acting like an abscess and it needed draining. There were two options on the table: a nephrostomy (an opening between the kidney and the skin, which allows a tube to drain the kidney) and a ureteric stent (a thin, flexible plastic tube which is curled at both ends to avoid damaging the kidney and urinary bladder and to prevent it from dislocating). The team decided a stent was the best option given the urgency, and so that afternoon I went to theatre to have one fitted. I came round in so much less pain it was amazing.

I have to credit the staff, particularly the theatre team who showed interest in my underlying conditions and didn’t just dismiss them. Yes I had to keep explaining that it is normal for my heart rate to be high, but otherwise there was a general basic understanding of PoTS and of hEDS.

I was kept in overnight, on IV fluids and antibiotics, given another anti-clotting injection and had another blood test at 6am the next morning. When the urology team came round that morning they were pleased with my progress, and provided the latest blood results showed an improvement on the last I would be allowed home – and I was!

Coming home was exhausting. And there have been many more challenges than I expected there to be; from being unable to sit myself up in bed, to the discomfort that comes with having a ureteric stent. But I am now slowly recovering, the bruises from the blood tests, injections and cannulas are healing (although one is still particularly painful), I’m starting to move a bit more easily and am getting used to the discomfort and strange sensations that come with the stent. I should be seeing a surgeon in four weeks time to discuss the full repair which needs to be done at a later date to fix the obstruction and get rid of the stent.

In the meantime I’m aiming to get plenty of rest and to recover enough to attend a family funeral, then my long awaited neurology appointment which I had to delay due to this hospital admission. I hope to publish a few posts I’ve had in my drafts for a while for ME & EDS awareness month too; all providing things continue to improve and I have the energy to do so. But for now, resting is my priority.

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