The (not so old) Crocks Cafe

Puzzledbubbles

Hi All

havent been in for a week or so, last time was having a mega positive after weaning off a lod of the drugs, now on a mega negative and pain is back with avengence, back to the drawing board and drug cabinate.

The idea was a good one while it lasted lol.

Hope everyone else is doing better than me and that the snow etc has not caused anyone too many issues.

Puzzled x

bigzippy

I can't sleep so thought i'd bob in. I can't say much as on my phone in bed! But thought i should answer and not be rude

Jennihen - No i've not got lupus - or at least not that's been diagnosed so far I've so far been told that i have ME and Fibromyalgia and the run of the mill IBS and asthma, reynaulds, allergies etc. I'm tole there's a lot of similarities between the symptoms experienced by lupus and ME/Fibro suffers tho, and i could definately relate to the spoons theory -hence i used it And no i don't think you're being nosey-or at least if you are then so am i, in double measure!

Invasion- i get feverish when i've overdone it too. Most noticeably at night and has been known to make my sleep pattern terrible. My doc told me that when i can't sleep like that it's usually that my brain's too hot and to take paracetamol-which does the trick quite often

Puzzled- i've had to come off all my meds a couple of times before now for tests and stuff and i found it awful! I couldn't last more than 5days i think it was! It did make me realise what a difference they must be making tho-and that the side effects are, at the moment at least, worth it! Hope you get some relief soon

So much for not sayin much eh? Lol

TOBRUK

How is everyone today? I'm like a drip - so no change there then!:D

bigzippy, I do hope you managed to get some sleep eventually! Is it that you just can't get to sleep or is the pain keeping you awake? I have had a problem for a few weeks now of not going off to sleep until 2-3am! This is mainly because of pain, although I'm tired it keeps me awake! After taking my meds at night, I then have to wait until they start kicking in before I can think of going to bed.

Invasion

BZ, it's the fever that's waking me up often in the night, and it makes me nauseas, so the ami makes my mouth dry, and being hot makes me want to drink, but can't unless I want to feel like about to be sick! No actual change in temp on thermometer, the brain thing makes sense, cos often para makes a difference... bizarre bodies!

TOB, how're you? I'm really horribly hot and exhausted and yet resisting rest- so often it's when you need it most that you want to rest least!

LameWolf

jennihen wrote: »

My sense of humour is the only thing that keeps me going sometimes!!

LOL As for me, I keep going with a combination of caffeine and sheer bloody-mindedness!:D

Amusing evening last night - we had a talk on Tarot at the monthly moot; cue Mr LW looking at Tarot cards for the first time in his life, and trying to do a three-card reading for someone he'd never clapped eyes on before!:rotfl:

We're supposed to be going to a CAMRA branch meeting tonight (yawn, yawn) snow permitting.

Jennihen I have lupus; and I get really fed up with people saying I look really well; don't they realise, the only time I have any colour at all is when the ol' butterfly rash is putting in an appearance?:mad::rotfl:
Anyway, I hope you get a better night tonight; really knocks the stuffing out of you sleeping badly, doesn't it? *Looks back over thread and realises that post was on Saturday..... oh well.....*:o

Invasion I'd love to feel hungry - I have a real problem eating, I find it tires me out so much that I'm reluctant to do it. And yet I still need to lose 3 stone. Go figure??? *Insert Confused smilie*

Puzzled I hope you can get settled with a happy medium so to speak, ie the right meds to help your pain, but not to make you feel like a walking pharmacy iyswim.:o

BZ as always, it's lovely to hear from you, but I do wish for your sake that you could get a proper night's sleep.

Tobruk any feedback of the house viewing from the other day yet?

*Waves* to everyone else - hope you're all having a safe, warm and pleasant Monday. Special (((HUG))) for Auntie Axe.

Trialia

I saw my flat on Friday, and I love it! Only a couple of things that need fixing about it, and the council have already made arrangements to do that (cracked window & retiling of kitchen floor) - and it's pre-adapted, so when I finally end up in a wheelchair, which I hope will not be for a good many years yet, I won't have to move! Plus I can reach the top cupboards in the kitchen without extra pain, and it has a double lock and lots of space, and I like the decor that's already there... It's shiny! I get to sign the papers for it tomorrow ^_________^;

TOBRUK

LameWolf, the house viewing went ok, a couple with a young teenager (I think he was about 13) came round with the estate agent. They came in and I was introduced, then the boy went across the lounge and jumped onto the swivel chair - the parents didn't blink! I didn't say a word but my face must have been a picture!

They went and started the tour in the conservatory and when they came into the lounge I went out of their way out to the conservatory, but before I left the room the woman piped up and said 'well, there's nothing to say about the lounge .. a lounge is just a lounge isn't it' !

After they left the estate agent came in to have a word and told me that he didn't think is was for them. He said some of their comments were ridiculous eg upstairs in the main bedroom is laminate and one comment was that the trim wasn't stuck - it hadn't been glued!!

So, yes it went extremely well ... not!:D

TOBRUK

Wow Triala, that's really exciting for you. When are you moving and is it a ground floor flat? Does this mean that you in a house at the moment and the move is because of this - sorry if you have mentioned any of this before but I don't really know your situation. Hope you don't mind me asking or being nosey!:)

Trialia

TOBRUK wrote: »

Wow Triala, that's really exciting for you. When are you moving and is it a ground floor flat? Does this mean that you in a house at the moment and the move is because of this - sorry if you have mentioned any of this before but I don't really know your situation. Hope you don't mind me asking or being nosey!:)

Pretty much. I've been sharing a house with people I really didn't get on with, and I've been having more and more trouble with the stairs in it over the last two years - had to keep putting my hip back in properly every time I got onto the landing, and there just wasn't room to lie on the floor to do that, and finding the energy to get up the stairs was difficult.

I've been on the council/housing association waiting list for a good while now, and they finally offered me a provisional tenancy for this ground-floor one-bedroom flat at the end of December. I got to view it on Friday and am finally signing the papers for it tomorrow - very excited, as have never had a place of my own before, and very nervous for much the same reason (not knowing exactly how much utilities will cost me and what to put aside, etc.).

TOBRUK

It must be awful living with people you don't get on with, but do they help you at all? When you're not well it's the worst thing to live around people that you really don't want in your space. You share the bills in the house do you?

Don't worry too much about living on your own - it's certainly going to be better than living with people you don't get on with! Is there gas central heating in the flat? Water meter? I am asking because of your worries about utility bills.

If I remember some of your posts, don't you have to have the heating on a lot of the time and are home a lot? Just asking because I live on my own in 2 bedroom house, here 24/7, have the heating on 24/7 these days and based on this I could give you details of my monthly DD on utility bills if you like. It may give you an idea and ease your worries.