Smiling Clare

Living Life, Within the Limits of Chronic Illness

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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Time to worry?

Strange as it seems I don’t usually worry about my health or test results too much; test results usually come back normal & for the most part I seem to know how to manage my health to keep it at it’s best given everything that’s going on. I worry more about having the tests than the results of them! It’s also unusual for me to hear worry in a doctor’s voice when they speak to me; confusion is common because lets be honest my body seems to be a bit of a mystery to most doctors. But worry isn’t something I usually hear.

So you might be able to imagine how worried I was when I received a phone call from my General Practitioner (GP) the day after an ultrasound scan; the scan was arranged to see if we could find a cause of the bladder pain I keep experiencing. However what we discovered was something of a surprise: my bladder appears fine in the scan. But it showed one of my kidneys is swollen, which sparked something of a panic (or at least the most concerned I’ve heard my GP sound in a long time!).

Urgent blood tests to check my kidney function had to be done that day, and I tell you it was a long weekend wait for the results which thankfully came back normal on the Monday morning. But it’s not the end of it, an urgent referral to urology has been made and we wait to see what they have to say.

The thing is though, is it time to worry when my GP sounds worried? Or should I be more worried in general?

My health throws up so many obstacles and the odd anomaly now that I don’t go to the doctor when most people would. I wait and see if it passes because nine times out of ten it seems to be related to flares in my existing conditions rather than anything else. With this I’ve actually had no real noticeable symptoms, unless they’re muddled in with my usual stuff. The things I worry about most are the tests (more fear of the unknown, or of fainting than anything else) and also meeting new doctors and having to explain my health. I’ve experienced so many different attitudes towards my symptoms, diagnoses and the way I manage over the years that I am genuinely scared when I meet a new doctor. I half expect to be dismissed as imagining my symptoms, or them just being a result of deconditioning, told to push myself to do more and stop using the aids which make life liveable. Attitudes towards my diagnoses vary, from understanding to utter confusion, since so many doctors still haven’t heard of hEDS and POTS.

I try not to worry about specific symptoms that much, because if I did I’d end up in a right state. There are far too many to worry about, and then there are things I’ve not realised are symptoms until a doctor tells me that’s not actually normal (for one thing I never knew it wasn’t normal for knees to bend backwards because mine always had done!) But my experiences with the medical profession has left me unable not to worry when seeing new health professionals, granted I now have some great ones treating me but I can’t forget what has gone before and to be honest I’m not sure I ever will be able to.

For now though it’s a case of more tests and more appointments with new medical professionals, and all the anxiety that now comes with that, along with the wait for test results. But fingers crossed for positive news soon!

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Hello 2022!

As any regular readers of this blog will know, I usually write a bit of a review of the previous year and set some goals for the year ahead but to be honest I’ve not really had the energy to put together anything like that… until now and even now it’s probably shorter than normal. But here it is, better late than never right?!

2021 was quite a year; I like to think I did indeed make the best of it like I said I hoped to at the beginning of the year but it certainly threw some challenges my way too! In all there were 17 hospital appointments, 4 jabs as well as numerous letters and phone calls with my GP (I’ve lost count of those!), dental appointments and other appointments. Unfortunately all 3 Covid jabs caused my health to flare badly for a few months, so things were pretty rocky at times as a result. In fact a month on since my booster jab (which might not be my booster jab as the nurse thinks I might require 3+ booster due to my health) and I’m still recovering from the flare it caused; slowly getting back to what my baseline was beforehand but not there yet. However thankfully I am able to do more than I could in those first few days/weeks following it.

We’ve learned a few more things about my body during 2021; the cause of the bright red rash which appears most notably on my face, neck, chest and upper arms is dysautonomia – my autonomic nervous system not working as it should – and we’re trialling high dose antihistamines to try and control that. Through physiotherapy I also learned that certain muscles don’t always engage when they should, particularly when climbing stairs, and we’ve been working on improving that through strengthening exercises.

Once again, there were few trips out other than to hospital appointments, although I did manage a particularly noteworthy trip to a garden centre with one of my best friends in November. And it was one of the best days.

2021 was also the year I finally reached out to the council for help/adaptations in the home as my mobility deteriorated drastically after my first Covid jab. So far I’ve got a couple of grab rails at the top of the stairs, and encountered what feels like a whole heap of obstacles along the way to finding out what other options are available in my parents little house. In the meantime I’m still struggling with the stairs, steps into the shower and more. So here’s hoping 2022 brings some progress on that front!

As for 2022, I have no real resolutions as such, but I am setting myself a goal just so I have some incentive to actually get it done.

  • To get myself a new wheelchair with power assist as my current (second-hand) one is beginning to fall apart. That’s something I’ve been “doing” since talking with my local wheelchair service in August 2021 but thanks to numerous hospital appointments haven’t actually made any progress with. It’s rather a big and important goal as it will help me so much, I just need to get my butt in gear and start sorting it!

Apart from that the plan is to continue to manage all the medical appointments (both hospital & GP) and medical admin that chronic illness keeps throwing at me, while also trying to make the best of the year. I’m hoping to be able to do something special to mark my milestone birthday in September but that all depends on a whole variety of things including my appointments!

But that’s about it really; I don’t want to put too much pressure on myself given the way my health is and the demands of medical appointments, I mean I have two medical appointments in the first week of January alone, and many more either booked or due to be booked later in the year. I wonder what the total will be for 2022… I guess only time will tell. Besides I think getting myself a new wheelchair with power assist is going to be a big enough task in itself!

Best Wishes to you all for 2022.

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