Tag Archives: Hypersomnia

General Update 2

Well it’s been a tough couple of weeks. I’ve gone from 3 months of only being able to squeeze 4-5 hours sleep a night out despite the best drugs on offer, to in the last 2 weeks sleeping 20 hours a day. I’ve also developed a new infection in my bladder – excessive urination, feels like you’ve been kicked in the nuts every time you sit down – which has not been pleasant. This is on top of the oral thrush which I’ve had for at least 2 months and drugs can’t seem to shift, makes me feel like I’ve been gargling sand and I have to say leaves your mouth tasting even worse than after a night of beer, cigarettes and kebab with garlic mayo (mmmm) – I can still just about remember those…

I’ve been trying to see the funny side of it however alas as the last couple of weeks have gone on it’s become harder and harder as I’ve reached depths of exhaustion even Sandhurst never got me to. Anyway my wonderful GP and an excellent dentist now seem to have got me on the right antibiotics and they are helping, thank God. What a relief although I still feel like Buster Gonad.

I also have a wonderfully caring wife who this week has taken a grip of various medical issues which with how I’ve been feeling I’d lost the will to follow up. For the first time since this ‘adventure’ began, in the interest of splurging my personal thoughts into the public domain, I will admit that at one point (actually a number of occasions, be honest Mike) I found myself thinking maybe no treatment would be better than months/years of feeling this crap – I know I know, mental slap around own face. Golden opportunity to learn how to talk to wife more, I’m trying.

Kady spent a day harassing the NHS to death and after FOUR weeks of nothing, finally got a date for my lung biopsy – 16 Dec. She also took the decision yesterday to discuss my severe downturn over the last couple of weeks with the Oncology Dept at Southampton who in light of everything asked for me to be admitted immediately. So a bit of a mad panic and a day of getting checked out in the hospital, was not overly impressed when I arrived on the ward and their first words were ‘you will definitely be here all weekend’. ‘We’ll see about that!’ I thought to myself knowing full well nothing happens in hospital at the weekend. Anyway they were wonderfully helpful as always, fantastic Doctors who always take the time to explain things and I got the full MOT.

Outcome – home by 1800, crack on with the antibiotics, I’m not about to drop dead, nothing sinister is going on however directed to increase my dose of Dexamethasone – steroids booooo – to get rid of the pressure headaches which were returning and will also give me some energy back. Makes sense but I did discuss (barter) with the Doctor about just how much to increase them by, we reached a compromise, it’s a balance of symptom relief without increasing the horrendous side effects.

It appears the explanation for my sudden and dramatic loss of energy and ability to stay awake is down to something called Hypersomnia or Somnolence Syndrome – Link – I was originally told this would hit me 2-3 weeks after Radiotherapy finished which would make it early October, it never did. I attached no significance to that as they did say not everyone gets it and I was also having a great time getting married and honeymooning. Well turns out for some people it can be 2-3 MONTHS, that’s me! So, non-sinister explanation for how sh*t I’ve been feeling for the last couple of weeks, that on top of the two infections. Morale not the best at the moment but Kady and I working on that and as always I know there are people far worse off.

One major lesson for me, again, I keep being too nice about accepting well meaning invitations to pre-Christmas events. I simply haven’t got the energy at the moment and am about to turn off ALL invites, I need to hibernate until my biopsy on the 16th, that’s got to be my number one priority. Really appreciate everyones’ care and concern, comments on here are fantastic – in fact more please – but I would ask that people avoid phoning or asking me to go to social events, boozing and being in crowded rooms are so far off my radar you wouldn’t believe it, who’d have thought I’d ever say that! I’m not being rude, but I need to beat these infections, get through this somnolence thing and be as fit as possible for my lung biopsy.