h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

Too much pain is never enough pain, that is. apparently.

Best sleep I've had in.... as long as I can recall

So. in order to balance the universe and set things right, and ensure I suffer, I woke with a terrible sore throat and headache.

Sore throat again right where all teh radiation dammage is; I guess as its gona be never 100% normal there, any infection will always now find it, as the weak s spot, I guess

Got up. moderately in extreme muscule pain and joint and bone pain, but not as bad as has been.

Came down. did all the dizzy. man. light headed. Oddly I'm so used to that now, from the year and a half constant dizzy/light headed on the hydrocortisone, that I don't find it odd, walking about constantly feeling like I'm falling and the world about me is moving round in increasingly insane randomness.

OK. So I'm 'more sick', OK, I know the routeen... sick day rules... risk of over-activity of immune response, to the insignificent infection, means, untreated I can get tacchiacardia, high pulse/BP and fluid loss, causing low BP but with the high heart rate, equals possible cardiac failure, coma, and death. same old. - basically adrenal crisis.

So took my levothyroxin, and just ponderd the rubbishness of everything, then had coffee, some paracetamol, and eventually sausages and toast, so I was able to take the drugs to save my life; the horrible steroids. double dose as one must in such circumstances.

note the time..... half an hour past, I'd not brought it up so I oughta be OK.
Drank some tea. sat for a while, feeling all the nausea, faint, pain, weakness, then went back to bed.

Steroid insomnia is unfightable. Got up. feel so vaccant no idea what to do, too weak/tired/painful to do much.... although... I think maybe shoe shopping after some lunch. Afterall, wondering out into town, whilst feeling sick and faint and dizzy and weak and in chronic pain, is so entirely wrong an idea... its almost certainly right.

Hospital tomorrow for testosterone. Still no idea what I'm ment to tell nurses. nothing seems to work. I might try and work with the ill, see if I can muster a dead faint or collapse of some kind. they might even notice that. or not... of course.

I told nurses everything.
They saw how weak I was, and barely able to walk at times. They saw me get so faint I had to hault my movements, on standing up (postural hypotension).
they didn't even bother measuring my BP, temp, etc.
I don't understand.
however, they did suggest I try see a differnt Dr/consultant, so switched to see a differnt consultant for next clinic appointment, in November.
had testosterone injection, bloods for basic stuff, PSA etc., testosterone level, plus thyroid levels (after I reminded them).
I'm just at a loss, as to what I'm ment to do, I sit there, in front of them, sweating, having heart palpiations, speech rate lowered, sweating, short on breath. they don't do anything. I nearly pass out when I stand. they don't do anything. also I may try get GP to switch me to a differnt brand of the levothyroxin, just in case I've some weird allergy thing happening, and perhasp also to a differnt brand of the prednisolone, assuming ther e are any other brands availible on the NHS/in the uk...
Testo= testosterone depo injection is hurting mor ethan useual, now, not sure why at least some of the leg pain and cramps appear to be abating, but still feeling so weak... not sure if I will try go to ten pin bowling tomorrow night or not, will just have to see if I'm feeling able or not tomorrow. too weak ATM.

I'm just at a loss.... Its not like they've turned round to me, and said, 'Yes, 2legs, most* people with this condition can live normal lives, you appear to be the small percentage who can't, ....', which would at least let me know something, and instead, when I've critical side effects of meds... they do nothing - just hoping new consultant might be of some help, and perhaps going to try with local GP/doctor soon again too, see if they've any ideas or suggestions....
So far testosterone doesn't appear to be fixing me...

Have you put in a formal complaint yet?

You have given them more than enough chances, this needs attention.

I think I have your email address through my blog so I'll contact you that way. I can help put a complaint together for you. Have you got or can you compile a list of dates you have seen professionals about this? That would be a good start. And then we push them through the complaints process and go to PHSO if necessary. This is ludicrous.

Mol

Probably got dates somewhere, on appointment cards etc, but not sure how easy to recall things like first time stuff was mentioned etc.... we can but try... I'm getting too exausted by their attitude, and having to deal with it, as well as dealing with treatment, and the just being terribly ill thing, to even contemplate doing a complaints thing myself - heck I needed a sit down tonight, after bathing, to recover enough physically, in order to do my hair and dry it

at Mol

Deb

my testosterone level must have dropped way way low, over the past few weeks.... the injection on Monday is only just* starting to have an effect that I can really notice, on alertness, energy, strength and ... thinking etc err... maybe see if its affected any other bits of my body later that might miraculusly start working a bit again

<sleepy. went to see GP she's the nice GP......

GP; "how can I help?",

W, " first, let us know wher eyou got those leopard print shoes from...." - well I wasn't fully in leopard print, but I had my new leopard print leggings on....

OK. so some progress. she's organised an ECG (tomorrow 8.30), although its not overly long since I last head one (to look at my heart palpitations etc).
Ive a tiny tiny tiny bottle, into which I'm ment to put a sample.... still trying to figure out how (to address the bowel problems),
A follow up appointment with her, in a weeks time, and she's writing to hospital to try bring forward my app with the new consultant- if that doesn't produce satisifactory progress, GP said we'll do a referal for a second opinion to a differnt hospital (which will mean London basically whcih isa drag for transport, but...).

No luck, really on the trying a differnt brand of the meds, but we went to speak to the pharmasist after, who's goign to phone her suppliers, but didn't sound hopeful that there are alternatives, but we'll pop in see her tomorrow afternoon

So exausted now, must think about dinner... maybe fish tonight, or if not... and that seems too much effort, might do a pilaf type thing with chicken, or, failing that, I've some pizza bases in the freezer, and there is chilis and sausages sitting in the fridge that would go well on that I think hmm... actually whatever we do I think we need some onions and mushrooms plenty of garlic sgtill lurking in the frying pan that serves as a makeshift veg rack still achey... arms at the moment, so maybe that is the oedema as my arms have balooned in the last couple of days and fingers are gradually disappearing now...