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

So tired today. not tired tired. fatigue tired. its differnt... and so damn annoying. makes me feel so desperate for a sleep... even though I know that sleep doesn't help at all ... guess it could be the chemo fatigue or radiation fatigue still, or the hypothyroiditis that still isn't being treated with meds after months of me nagging at them think I'll cancel ten pin bowling tonight, so woudln't be fun feeling this disassociated from my own body and the world around me...

have had the painter and decorator round, to show him what we want done and measure up for giving an estimate etc now waiting for the gas engineer.
electriction just phoned, so we've booked them into come round next week now
Phonecall from GP surgery receptionist this morning.... wanted to arrange time for me to have a phone consultation with the GP who'd recieved a letter from my oncologist
so spoke to her she's arranging bloods to test some more into my memory problems, and oncologty have arranged a brain CT scan for looking into the same
Then, depending what they show may have a appointment with the memory clinic at the hospital; but we'll wait until results of last thyroid hormone test, and my possibly finally starting on thyroxin as that can affect memory too before having that clinic appointmnet

Also got weird letter through about my eyes.... apparently they've been tring to contact me.... need to phone em up to arrange for investigation there and possibly, I guess maybe some treatment which could hopefully make the tears work again and stop me having to use all thes eyedrops all the damn time

I need mor etea. so tired. where's this damn gas engineer... nearly tiem for more hydrocortisone... as if i wasn't already tired enough yoga was good yesterday

Traveller in Time feeling as if just done a marathon
"Seems the only missing are more heavy construction workers.

Must be a near rebuild, lodger out W in "

Good to see you back on-line. Very best wishes as always.

I'm never really offline.... but its just been so totally quiet on HooToo lately well gas engineer came today, serviced boiler repressurised heating circuit a bit then... checked the gas meter.. and found a leak somwhere in the system he fixed the radiator in the lodger's old room, and disconnected/capped the ancient gas heater fire thing in there, I didn't even realise was there to get the leak not leaking (can't really find exactly where it is), we've lost the gas hob for the time being; as the gas hob is on the old iron pipe from the gas mains, whereas the boiler, which is newer, is at least on a new 2 inch pipe of copper gonna have to live without a hob for a while; will have new pipe fed up to kitchen for hob, when we have the kitchen ripped out (was due on the list for being a new kitchen fitted this year anyhow)

That's pretty exciting.
I earned some money in Hong Kong in January that will enable me to fix something in the house - not everything that needs doing. So I'm pondering the most urgent tasks. Possibly the lounge, as I'm no longer capable of papering or painting ceilings. Or possibly a crack in the lath and plaster in one of the bedrooms that appeared when a cupboard was taken out to put a shower in the adjoining corner of the bathroom
Perhaps I should lift the hall and landing carpet and have some new floorboards put in. They will be a vast and unseen expense as the old boards are 10 inches wide and "they don't make them like that any more"
Oh well, I still don't have the money.
I do hope some of your medical bits get fixed. I had the usual February blues and was worried you might have something similar, but we established before that your glass is usually half full. Regards

My medical stuff just gets more surreal, unfathonable and odd... I kinda like it... well, if you can't laugh at your own misfortune whos' an you? - today booked an appointment with an optition, which is odd, as I'm totally blind, this is some private optition I think, but on a referal from the GP, I htink to look at my not working tear ducts/tear production.
Also got a letter through today for another upcoming endocrine appointment at hospital in August, on top fo the one in April; with oncology clinic appointmment inbetween in May - CT scan at end of March, off to do bloods one day this week, for memory/neurology/oncology/endocrinology and, err... sure there's soemthign else too

Well, second load of Painters and decorators visited today, to give quote, still need to find two companys (or more) to quote on kitchen and one more (at least) to quote for bathroom. problem is ntohign much done to this house in fifteen years, and stuff from further back is failing; like the failing gas pipe to the cooker; hence no gas hob until kitchen is refitted now, as to get new gas pipe in involves quite a lot of hastle to get it from downstairs cupboard, up, into the walk in loft, through the wall into the utility room, then through the wall into the kitchen, and behind where all the units are; hence waiting until all the kitchen units are ripped out, at least, and then can of course ensure new gas pepe ends up at right place for wherever we decide to have the gas hob electrition here next week, house may need a rewire before we can even do painting and decorating and bathroom/kitchen etc (no point starting a job like bathroom or kitchen, to discover part way in the electrics ain't any good; simsularly don't want to pay out for painting etc, to then have the walls re-channeled out, and then need to pay to repain again too).

once that lot is done, can think about painting etc spare rooms, hallways, landings, etc, and then to the rest of the flooring throughout, replacing the front door, and the staircase downstairs, which needs new flooring too - all of which is to be done by the 26 th May . really

another rubbish day. no sleep again last night. feeling so ill. no idea why, not sure if its anything I'm ment to be telling any of my doctors etc, as they don't tell me what I am ment to tell them; I still have no idea what my cancer follow up clinic meetings are ment to be for. you'd think they'd tell me. Mind, I've still not got an answer, now having asked it for a year, to the question of what affect my medication is ment to ahve, and how I'm ment to know I've taken too much, or insufficient Wish I had one competant doctor anywhere.

I wish you did too. I have been stupendously lucky with the various things that have started to go wrong with me and that includes competent doctors and kind nurses in the UK at any rate. I wasn't much impressed with the non bedside manners in Hong Kong and one very sick friend has gone to mainland China for preference. I think I'd better start being more vocal in my support for junior doctors (so-called) in the UK.

A lot of the Drs are good Drs, only one is a decent scientist as well (the endocrine Professor, who bless his cotton socks is utterly baffled by my odd reaction to hydrocortisone!), Still kinda peeved that oncology don't let you know about all the potential side affects of the drugs; yeh, they'r e worried of scaring patients off having treatment; but it'd kinda have been nice to know what exactly I'm mennt to be reporting to them as side effects I was having during treatment.... Still slightly mythed by the oncologist who replied "I don't want to know unless they'r eswollen ", in reponse to my reporting how my err, crown jewels had shrunk during chemo; that delayed getting my lack of testosterone diagnosed for ages, and ment I had the menapause to contend with, and the horrible hot flushes - main problem as always is that there is no doctor to take control and thereby responsibility for me, as a patient; endocrinology do endocrinology oncolology do cancer, etc., etc., = a lot of one just sayign its the others fault etc... GP ATM is being quite brill, getting things moving, albeit in such a roundabout manner and, again not having a single Dr in charge, I'm not entirely sure any single Dr knows all my current symptoms ailments side affects and odd reactions etc... - I'm so lacking concentration, full of brain fog, abscent, not with it, sort of stoned/foatly all the time, disconnected, etc, cognatively, and still with various msucle and joint aches etc, and digestive tract problems, memory problems, mood swings, no temperature regulation in my body, etc, and i'm not sure any Dr know sthat list, but only perhaps bits of it... - most of which might be down to not having any thyroxin mind, so kinda hoping ATM get that letter soon from Endocrinology prof to start me on thyroxin... like I don't actually want any more meds, but if it helps I'm just not alive like this, just a ghost going through default reactions and actions and double0-guessing what 'i' might do in any given circumstance as it were... detached mind from body, and mind detached from reality/the physical world/sensory world as it were... so awkward to discribe... I mean... I'm know I'm sor tof ment to be weird anyhow... but ATM... its so far beyond weird its virtually sectionable... Only with extreme sleep deprivation of over 50 hours do I feel remotely awake.- figure!

Well, finally got the letter in the post today!

Endocrine prof..... yep, hypothyroiditis as well now, so need to start on thyroxin daily replacement

Took letter to GP, (they should have recieved a copy; ours in effect was the copy/CC-ed in).

They'd not seen it. so they scanned it in. going back there later this afternoon, to hopefully pick up a script and get that forfilled by the pharmacy, so I can start in on the new drugs
really hoping they'll make me feel a lot better... the low thyroxin could be responsible for just about every symptom I have at the moment - bit of a juggling act coming up though, I suspect it'll interact in a weird way with my hydrocortisne; in fact, with thyroxin inside, my body might be able to tollerate a theraputic dose of the hydrocortisone, as at the moment, (much to the annoyance of my encrinologist) I've reduced my hydrocortisone to below the theoretical dose where it does anything

must get on. rewiring some cables, for the custom built speakers so I can finally get them plugged into the Hifi... so damn tricky and fiddly especially with neuropathy; gotta be so cautious stripping the wires with the box knife but I'm hopeless getting the wire stripper thing to work properly, without losing so much of the actual stands of wire to work Still feeling so faint and tired.

Oh I do hope the thyroid meds help with fatigue and brain fog, and even weightloss perhaps.

me too. I'm just a robot ATM. time passes I think, but I've no concept of time anymore, or of what I'm doing.

went back to GP surgery and thence pharmacy now have thyroxin

Fingers tightly crossed.

How many roads must a man walk down?

I really hope so too would be so nice if my brain started working vaguely again a bit

Haven't I always been saying thyroid! I know what a difference the right dose of thyroxin made to a friend so I hope it's what you need too.

yes. as I have too. = I was telling endocrine Dr (the professor), and the nurses I see in endocrinology for my testosterone injections, about my level being low, since September/October last year. - they could see my levels were low, the numbers on my test results for both free T3 and for TSH were low; then over time they dropped lower, but no one believed me, and I have absolutely no idea why as they've got the results written down, for the test, they did, yet didn't 'see' the numbers; whilst sitting in professors office, a few weeks (last week? no idea I've no concept of time left), I told him again, he looked at the numbers on his screen and denied it. I told him to look again, he denied it, William told him to look, and eventually he resigned himself to admit they numbers were a 'bit low' (they were low from the first reading back at the beginging of 2015, about Febuary time I think), - not willing to admit defeat, he wouldn't script me thryoxin on the basis of my bloods showing my levels were low enough to script thyroxin, instead I had to have another blood test; which, showed as it happened my levels had dropped again, by half since the last readng.

I keep sitting there, telling them how Ill I am, its a physical effort every waking minute not to pass out. they don't believe me, and I have no idea why. I didn't feel this ill after either of my two brain hemoridges, or, indeed minutes after major brain surgery I felt better than I do now. but I'm ment to be well so they ignore me.

well took first dose of levothyroxin yesterday, and second dose at about 10 AM today. didn't sleep all night, so hydrocortisone dose entirely messed up. took first dose of hydrocortisone at 6 AM then again at 10.30. then I slept until 3 Pm and took another dose of hydrocortisone, to which my body reacts as if it is the morning dose (I.E., I feel even more ill), which probably means my body thought it was 9 AM at 3 PM this afternoon. - I've yet to find a nurse or Dr who can understand not living a 24 hour day; yet all my drugs are dosed based on a 24 hour day with waking sleep cycles in them; my record for during chemotherapy was going 80 hours plus with no sleep and turning up for chemo drugs, so I've no idea now if I've taken too much hydrocortisone or too little

Oh, and its a pity I didn't notice my thyroxin was lower earlier, last year, but of course the results they send to me are in print which I cn't read so I didn't know what the figures where then hope my sleep can settle down at some point soon this week coming, so I can organise the thyroxin dose properly. actually must go find out about dosing/timing it, as I haven't recieved any infor about that except for taking it on waking before breakfast, which does rahter assume one both sleeps, wakes, and has a meal called breakfast; I assume they actually mean take it at 7 AM, based on an assumpmtion everyone gets up at 7 AM

I assume you'll be presenting them with a sleep diary so they can try to work it out (? lol)I often have the opposite problem and have to try and work insulin injections round three or four short sleeps. I know it's nothing compared to your scheduling problems but I do sympathise

I have, in so far as I've told tem how eratic my sleep is, and I think i kinda just get how to dose the main drug, the hydrocortisone - one of the nedocrine nurses is a bit more... less pritthy about it all and I told her how I tend to dose it when I've not slept etc, and she said it sounded vaguely OK... - like today in the end I ended up with four doses of 5 MG, as compaired to my normal 3 X 5 MG; they kinda want me to be on 20 anyhow, and as its a long day in effect, I think* that seems to make sense although, it still doesn't make any sense that I get all the side affects of abscence of the drug, when I do take it, and feel fine and 100% better when I'm at the furthest ebb from my last dose; I don't honestly think the endocrine prof believes me when I tell him taht - on my morning dose, if I take what I should, 10 MG, i am so paralysed, I can't cook, barely can move, and can hardly talk let alone think yet, I'm ment to be kinda desperate to get that morning dose into me, as I'm ment to be feeling rubbish from running low on it, overnight Even my hormones are weird

What do you mean "Even"? Basically you need to go back to go and start again with all your hormones.(I suppose that would kill you, though) You'd be a fascinating study for the endocrinologist if he was paying attention - you have to be worth major funding to investigate - probably a Nobel in there somewhere.