Fibromyalgia (part 2)

kassandra

Oi, CWTA, watch it cheeky . I still don't know what the SF ball is and what is SLE?

I've met a woman on-line who lives in Doncaster and goes to a group there. She has invited me along which was really nice of her. Have I told you this before? Hmmm......well anyway just smile and nod and pretend this is the first time if it isn't Anyway, the reason I'm saying is I think someone is from S.Yorks, I tried looking back to see who it was but it doesn't show you when you've already started typing. I think Donny is in S.Yorks but I also get confused over places as well as everything else!

Greetings PP! I'm new too so don't worry if you can't remember who said what cos I can't either!

BZ I hope you get it sorted soon. I have no heating in my house and it is freezing! We bought a second hand calor gas fire yesterday so I might actually be able to get dressed in my bedroom now :T

Unity I was pleased to hear you got dxd at Uni. The reason I was interested was that I had to leave Uni as I just couldn't manage anymore. I had almost completed my first year then missed an exam as I was too ill. I didn't have a reasonable explaination as I couldn't say I felt like carp and I was tired, so I told them I had been let down with my childcare. I just kind of gave up then and didn't go for the re-sit as I just felt useless and depressed and a failure. I was dxd in August that year and I could kick myself now :mad: If only it had been the year before. I could have got help and instead of doing it full time with a part time job and two troubled teenagers living with me as they had been thrown out of home. I could have taken a deep breath and told the kids that I just simply wasn't equipped to deal with them, gone part time at Uni and given my job up. Saying that though, it might still have proven useless. My mind seems to have gone on holiday. My I.Q. was previously erm can't remember lol but I know it was considered genius level but now I have trouble spelling a three letter word :rotfl:

Oooh I haven't half babbled away here haven't I! I find myself wandering, not in a middle of the street in my jamas kind of way, although it probably won't be long! But in my head. It feels like there is loads of things going on but I can't focus on one thing. Like being in a pub and hearing all that noise of chattering but not being able to focus on one conversation iykwim :T Hooray for me, I used it!

Right I'm even annoying myself now so best go.

Sweet dreams all
xxxx

[Deleted User]

BZ congrats, I knew someone was getting married but I kept losing track of who it was...lol. I bet you can't wait, I think I saw ur dress in an earlier post it is gorgeous, really feminine and romantic.

just got back from Tesco decided to stock up on goodies in case of more snow...there wasn't much left it looked like people were preparing for the end of the world, ended up with some wrinkly lettuce and some tinned soup...tasty

nighty night everyone

kassandra

It isn't Doncaster it's Pontefract. See, I haven't a clue what I'm talking about!!!

Ah yes and it's raeh who is in S.Yorks. Was it you that said you had been to one before and you didn't like it?

Magenta

Hi thanks to all who pm'd me xx

Is it just me or do some of the posts disappear!!! Cos I posted yesterday and it has gone!!!!:eek:

LittleTinker

sharon59 wrote: »

afternoon all-so many post since yesterday-really nice to see. We had more snow overnight so DH school closed so he is doing housework and making me tea and doing soup for tea -hes a darling.
Took myself to town yesterday afternoon and arrived back very down as could barley drag myself around and the pain in my back and leg/hip was excruciating and seems to have set off flare as feet had the concrete boot feeling and was exhausted.Its a week since my hip jab and not improved so doom and gloom has set in!
I go to a support group once a month and like Jamala said its good to meet others -like it is on here.We meet in a lovely venue -warm and comfy luckily.
Kass DD = Dear Daughter etc -when l first saw it was totally foxed too!
Hope everyone is keeping as warm as possible.We have had more snow and more expected later.
hugs to all
Is the rumour true then BZ 'S getting married!!!

Im sorry that your hip jab didnt work for you this time.

Can I just ask you...was that a steroid for hip bursitis?

Unity

Hi,

Yes t'was me that got dxd when I was at university. I was already registered disabled due to spinal injuries so I got help with a parking space :T. Unfortunately despite the fact it had my name on, it was constantly used by others including a member of the lecturing body :eek:. Parking spaces were at a premium which meant that I sometimes had to give up and return home because I just could not park. The worst offender was another disabled bloke who could have done as I did and arranged a named space - but he just thought he had a right to mine. The way I look at it, there's disabilities and then there's rank lazyitis! Having asked politely on a number of occasions for him to stop security finally clamped his car - which subsequently stopped him;).

I graduated back in '98 and hopefully things will have changed a lot since then. I found that although they had an inch thick handbook on the politically correct way to address (get this) "differently abled students" - consisting mostly of refering to the rest of the student body as "non-disabled students":rotfl::rotfl::rotfl:they had no system set in place to ensure practical help. My situation was that I had to ask for everything - which made me feel even worse . Things like accessible lecture rooms, a seminar that was not held on the third floor of a three storey building without a lift :rolleyes:. I really got the impression that although they wanted the kudos of being "disabled friendly", they certainly did not want to actually DO anything to help. In short the administrative bods made something which was difficult - downright unmanageable, unless you were incredibly tenacious and bluddy awkward - which thankfully I was .

Welcome Pennypincher - your case sounds much like mine - in that DH is my FT carer and we had to give up highly paid jobs. We don't get any help at all from outside bodies although they did put a stair-lift in and disabled access to the rear of the house - which floods whenever there's the slightest rain:rolleyes:, talk about can't get the staff:D. At the time we had savings and had to contribute to this - but was told that this was all we would ever have to pay for, LA would service the stair-lift from then on. Suffice to say I've had a letter to say that the guarantee runs out in November and from then on I'll have to pay £160 for the service:eek:. My MP is currently looking into this.

Thankfully like all true MSE'ers we are used to making do and mending and in truth I think things are more appreciated when you have to save for them.

We're a grand crowd on here - if we were rich they'd call us eccentric - as it is we are just plain old mad :rotfl:.

Careful_with_that_Axe

SLE - Systemic Lupus Erythrematosis. Tis a type of Lupus with a specific anti-N antibody.

Hope all are Ok today.
BZ - piccie of house etc please! Is the heating finally sorted now?
Trialia, Happy Burfday for Tuesday!

Chores to do again today *sigh*

suep

I've got a stairlift too, we got a grant from the council for it, I cant remember how much we pay to have it serviced every year at the moment, Im tired from going out shopping this morning even though I was in the wheelchair :rolleyes:

Kassandra Im still giggling after reading your post, I cant even remember why, but it was funny :rotfl: also well done for using the funny word, I still havn't

Hope everyones ok

Unity

Penny-Pincher!! wrote: »

I had a similar letter this week asking for £400 to cover the stairlift as its over 3 years old now. I am trying to contact my OT to see whether there is a cheaper option or possible funding

PP
xx

I wouldn't have minded if they had told me this at the outset, but because we had put so much of our savings into having the relevant work done (including funding the demolition and rebuilding of our garage - with an electric door at the front and back so we could drive straight through) they said that they would continue to service the stair-lift indefinitely. Mind you it doesn't stop the same LA from forking out 40 million for a new 'statement' bridge:eek:. All we need is something to stretch from one side of the river to the other .

My friend is losing the carer she has had for the last ten years as the LA is putting ordinary disabled care out to private contractors and putting all their carers into looking after dementia sufferers because Central Government funding is better! Just one of those things I suppose.

sharon59

LittleTinker wrote: »

Im sorry that your hip jab didnt work for you this time.

Can I just ask you...was that a steroid for hip bursitis?

Yes it was-l thought it was worth a try-even if getting into the position for doc to give it was bl**dy painful!