Thursday, 3 July 2014

03/07/14 update: health, Uni, medical leave

It's July. Already?! Eek. Where on earth did June, May, April, March and February go?! Wah! It would seem time in fact flies regardless of whether you are having fun..

I'm heading to my university city for a whole week soon to see a few doctors and sort out prescriptions and have my asthma review.. All exciting stuff. It'll be nice to see some friends who are still there though (some won't be around which is a shame). I'm not quite sure how I'm going to manage everything I've got planned, alongside serious challenges including getting washed and dressed, but I'll give it a go. What's the worst that can happen?! Ok, don't answer that actually..

How have things been since I last properly updated? Well, much the same really. I'm struggling to varying degrees with things I wish I still took for granted. I have been out and about a few times and have seen a friend though which has been nice.

My sleep schedule is still rather.. unique. I recently had to fill in a sleep diary for hospital which basically showed that my sleep is a mess (my analysis, not theirs). On average I got less than 6 and a half hours of sleep (range from 2hrs45 to 9hrs20) and it took an average of 200 mins (3hrs20) to fall asleep after lights out (range 2 hours to 5 hours 10 minutes). Yeah. Normally I sleep from about 2 until about 10, but it varies a lot.

Pain. Well, it hurts. I went to the cinema recently to see A Fault In Our Stars (good film, but tears are inevitable) and I remember them quoting 'pain demands to be felt'. So very true. 50mg Tramadol is now about as effective as swallowing a smartie and hoping it will help. My pregabalin (Lyrica) dose has now been increased to 600mg total per day.. The maximum dose. I'm not totally sure this is safe long-term as I'm only relatively light (and several doctors have pointed out to me that dosages should really be dependent on weight). It seems to be helping to some extent thankfully, but my pain levels are far from ideal. My ribs have been agony in particular- they never used to give me much grief, but the last few months my ribs have given me more grief than most other body parts.

On the subject of only being little, I'm significantly less little than I was- yay! I'm still about half a stone lighter than I was when I was well but I'm quite happy with how things are going. My weight is creeping up nicely. My ribs are still horribly bony yet my tummy is big and swollen (ok, partly IBS-related)- typical- you really should get to choose where the weight goes!

On a closely-related matter, my nausea is still ok. Not going to talk about this any further incase I jinx things ;)

Fatigue is still a nightmare. I still have to lie down a lot. Doing anything vaguely physical is pretty much a no-go. I can go out on my mobility scooter for a day (well, a few hours) and I'll be shattered but I can manage that ok (not every day, but some days). Bathing/showering and dressing and washing my hair (the absolute worst!) are much, much more of a challenge.

Walking is a real challenge. My balance seems even worse than it was..

My mood is variable, but it's been ok. The pain levels have been difficult to endure at times and that wears me down. I've also been stressing a bit at the idea of starting back at Uni, because things are far from how I'd hoped they'd be at this point, but it's exciting to think I'll hopefully be back with my friends and doing what I want to do. The lack of progress is frustrating. Going weeks at a time without seeing anyone your own age is strange. Relying on others and losing any sense of purpose is soul-destroying. But mostly I muddle along ok, and stay relatively happy. I enjoy the little things, and they keep me going.

My brain feels very mushy and I get mentally fatigued as well as physically which is frustrating. I can't always manage (and when I can, I often forget) to reply to long messages (sorry everyone currently waiting for replies) and I can't always manage to update my blog which is why posts are sometimes rather infrequent. This is a bit of a concern considering I'm hoping to return to university in September. I also get stuck on sounds sometimes (sss, lll, rrr, www) and can't remember specific words when I'm talking which is really annoying.

It's become clear to me that Interruption of studies/Medical leave(/being stuck at home chronically ill for any reason) is far from the 'easy option'. The challenges while struggling at Uni are different to those while on medical leave, but neither circumstance is an easier experience than the other. I dream of being back at Uni, but I dream of being back AND well- I don't miss the constant administrative nightmare of juggling everything medical with studying, I don't miss trying to do pieces of work or revision through flares, I don't miss never knowing how I was going to drag myself through the next day, I don't miss trying to get my screaming body through to the end of the week and spending the weekends recovering enough to face the same onslaught the next week. When I was struggling at Uni time off certainly appealed, but I definitely didn't hope for this reality- time out from Uni, with little you are able to do, too ill to go out regularly, and few friends around to visit, is isolating, depressing, mind-numbing and incredibly frustrating; nobody would 'wish they got to lie around all day like me' if they took into consideration the amount of pain I'm in, the lack of choice I have in the matter, the fact most daily tasks are a huge challenge or impossible for me most days or how horribly ill I constantly feel. When I was at Uni I wanted a holiday- but from Uni AND my illness, primarily the latter. Basically, I just want rid of this illness, then even the holiday wouldn't be necessary, although it would still be nice!

I had no choice in swapping from struggling at Uni to going on medical leave because I was too ill to stay studying, but I have a choice (to some extent) about swapping back and I still want to try and study again, despite the challenges. I'm going in with my eyes wide open- I know it's going to be hard- but it'll be worth it. I can't do the job I want without getting through my course first, so although it would be great to enjoy every second of my course, right now just getting through it is the aim. I love my course, and I just hope it doesn't feel like an ordeal this time round. I'm not a lot better than I was when I left, but I want to give it a try. I'm paying rent anyway, so I may as well try and live there! I won't do anything stupid though, there's lots that needs to be taken into consideration. If I don't feel able to meet the demands of my course, or my condition relapses, I will have to retreat.

This is all presuming I get the go-ahead from my consultant to resume my studies.. I think it's going to be a close call to be honest. I could obviously influence the decision hugely if I wanted to, but I want him to be able to make an accurate assessment of the situation and advise me accordingly. Balancing my health and my ambition isn't easy, so in a way I'd like someone else to be making the decision.

Going back would risk aggravating things, and could possibly trigger a further decline in my condition. I'm not sure I feel able to cope with an even greater level of illness and disability. Obviously that would be worst case scenario but it's perfectly possible..

Living with a chronic illness seems to involve constantly walking fine lines. It's often hard to know what to do and actions always have consequences. You can't always prioritise health, because you could end up mollycoddling your failing health and getting nowhere in life. Sometimes pushing boundaries to some extent is a positive thing. Pushing them too far, however, risks disaster. You do have to know when to step away but at some point you have to try dipping your toe back in the water again, but knowing when it's safe to do so isn't always easy.


  1. Yay she's back! Sorry to hear things have not been too great, my sleep is all over the place too, I'm ALWAYS tired yet I can never sleep, not at night anyway! The last paragraph has really hit the nail on the head. You've put exactly how I feel into words.
    Fingers crossed the week at your university City goes smoothly.
    Lots of love! Xx

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