Fibromyalgia (part 2)

saffiedale_2

helibee wrote: »

hi i was just wondering if i could join your thread. I've had FM for 8 years now (that we know of ) My husband is utterly amazing and he keeps me grounded, sane and loved and my wee baby son too!:heartsmil I had to give up my nurse training in 2003 as i was just getting too ill and the patients were offering me thier beds:rotfl: . I take tramadol daily which helps and occaisionally need dihydrocodeine or morpheine too. I LOVE my TENS machine.

I'm in the process of finally applying for DLA now that i have a fantastically suportive doctor.

Anyway i hope everyone is ok and not sufering too much atm, i had a really bad flare up a few weeks ago and was in bed for 2 weeks

hi and welcome to our group.:o iv not long got on here and iv had so much love and support:j these guys have made me a stronger person.:D

kassandra

Hi all. I'm in need of some serious cheering up. Got a letter today turning me down for DLA. Was kind of expecting that as sooooo many people have said they got turned down first time but it's what they put that has sent me into a depressive mood. They put things like "you don't need help bathing" and "you can walk over 50 yards adequately" How dare they call me a liar! I've been crying all morning because of it. I feel like I did before I got diagnosed.

The last time I bathed by myself was when I fell and dislocated my shoulder. My hair is so greasy at the moment because I can't do it myself and I haven't been able to go out in the last four days so can't go to the hairdressers for it washing. It's humiliating enough without embarrassing my daughter and asking her to do it. As for the walking thing! Do they not think that is humiliating too? That I know people are watching me because they can so obviously see I can't walk properly. I never knew what 50 yards was until last week when I borrowed a friends sat nav and it's further than I thought. There is no way I can do that. Maybe on one of my best days if it is on the flat but how often am I gonna get that. Are they saying that I was lying to school too when I explained I would have to bring them late to get parked near school as I couldn't manage the walk which incidentally was less than fifty yards, more like twenty! Am I letting my kids go in late and miss out on things because I am lazy?

It says that I can appeal and mentions something about a form and where to get it. How the !!!! am I supposed to do that when I can't get out? I went on the CAB website which tells me they don't do anything over the net but I should go to the local one or phone a number. I can't get out and have no credit on my phone and no money!

I'm sorry guys but it just feels like they have just shoved it right up my !!!! and I know there are a lot of other people in mine and worse situations but I can't help feeling like this.

suep

Oh Kass, I do understand how upset this has made you. Try not to take it personally. Did you get any help from CAB with filling it out ? When your feeling stronger give them a ring and they will go through the appeal process with you and help you with the form. If that doesnt work apply again, I dont think theres any law about how many times you can apply and you should be getting it. Also when I applied someone from CAB came to my house to help me fill the form in, so you dont even have to worry about going out.

Ive heard so many times that its not what you write but how you write it, so dont blame yourself, they are all B*******s

Now go and do something to take your mind off it and cheer yourself up, eat something yummy and put a funny dvd on or whatever you do that helps cheer you up. Im re-reading my Terry Pratchett books at the moment, they always make me laugh :rotfl:

Ooops sorry hun, just noticed the bit about having no credit. It doesn't have to be today anyway, but try and do it as soon as you can.
take care

I hope your feeling stronger and in fighting mode again soon.

Careful_with_that_Axe

Sorry to hear that kass. No wonder you are feeling down. Have a day lolling in misery and wake tomorrow with a resolve not to let the beggers get away with it. Is there anyone who can act as an advocate for you?

raeh, I apologise if I named and shamed you incorrectly *grin*. I have to say I am useless as baking as I'm too heavy handed, but I make ace bread. If you want anything pummeling, I'm your gal!

LameWolf, so pleased you had a good time. I bet your bruises are from swinging on the chandelier-don't be too ashamed to admit it to us *grin*

sue I've been really extravagant and have been using a whole bath bomb in my baths for that extra special soak. I have no idea what I'm gonna do when the Lush stuff runs out.

Had a brainwave last night - no chance of getting concil accomodation here, but I wonder if I would be any sort of priority with HA's. Off to hit t'interweb to do some research.
Laters taters

Unity

Hi everyone, welcome Shirl and anyone else I've missed.

Sorry to hear about the DLA Kass - don't worry about having a good cry - we all have at some stage having to deal with these government eejits . In a couple of days the hurt wears off and if you are lucky it's replaced by righteous indignation and a bit of anger! Appeal and keep appealing until you get what you are due to.

Sorry to say I can't be much help today as I am struggling . I managed to get to the local knitting group on Saturday and enjoyed meeting some new friends, but have paid for it ever since:(.

Pain levels are pretty bad especially my back and my hands are swollen, so can't type for long. I had a really bad night with the dreams again - thank goodness for DH waking me. Someone had tied my feet together, they were hoisting me up by my ankles and I could see them coming towards me with a large sickle to cut my throat :eek:. When DH woke me up I felt so sick I could have vomited then and there and it took me ages to get myself sorted out.

So I feel like the wreck of the Mary Rose and I'm off to catch up on sleep before I start typing even more gibberish than normal

Take care everyone, have a good Monday

saffiedale_2

HI ALL, SO SORRY TO HEAR WHAT THE W.....S HAVE DONE TO YOU:mad: MY HUBBY GAVE IN WORK TO LOOK AFTER ME. YOU KNOW HE WAS OUT OF WORK 3 WEEKS AND HIS HEALTH TOOK A NOSE DIVE.:eek: HE GOT ARTH IN KNEE, FEET, HAND IS SWOLLEN SO BAD THAT HE CARNT LIFT ANYTHING HEAVY.I BLAME MYSELF AT TIMES CUZ I THINK MAYBE IF HE HAD STAYED AT WORK? SPOSE IT JUST HAPPEND AT THAT TIME? SOME DAYS HE WALKS SLOWER THAN ME.:eek: :eek: :eek: . GOTA BE BAD. SOCIAL WORKER TOLD HIM TO APPLY FOR DLA. AFTER 7 WEEKS HE GOT TURN DOWN?:mad: TOLD HIM THE SAME AS KASS... I WROTE AND ASK FOR A REASON WHY HE WAS TURN DOWN, AND HO THINGS HAD GO WORSE. SAID WE WOULD APPEAL. WE GOT ANOTHER LETTER SAYING THEY ARE LOOKING AT IT AGAIN.:rolleyes: DONT KNOW IF TO START APPEAL FORMS YET? HE CANNOT GET OUT TO DO THE SHOPPING NOW, GOT TO GET OT ASSESMENT FOR BED LEAVER. IV GOT ONE. NEVER THOUGHT HE WOULD COME TO IT. HE CARNT EVEN GET DOWN ON FLOOR NOW, NEVER MIND GET UP. 50 METERS IS A LONG WAY. HE WOULD NOTEVEN TEMPT IT, NEVER MIND THEM SAYING HE CAN DO IT.:mad: I KNOW HE CARNT. sorry guys im back.:o hope the rest of you arnt to bad? hope you are taking it easy sue? i just am trying to start a new thread for people with ankylosing spondo. i did try last year but some nice person decided i was ask for medical advice and shut me down?:mad: :mad: :mad: guna have to watch what im saying.lol.:j not too bad a day besides my neck is real bad, a.s, or f.m? does it matter?

Careful_with_that_Axe

Unity, hugs to you me'darlin. That sounds a horrendous dream! You poor love. I hope you can keep your mind distracted from remembering it today and that your pain improves soon.
Have you tried anything like lavender essential oil on your pillow to try to stop the dreams? Or even a tot of Brandy before you hit the bed!
Hope you have a better night tonight.

Trialia

*huggles Kass and Unity*

My glasses are broken, I can't get another NHS voucher until May and I can't see clearly further than about six inches in front of my face without any - and the DWP just denied me a crisis loan to get them replaced (they're past repair), despite the fact that my depth perception is so screwed up without them that I nearly stumbled into traffic several times on the way to the Jobcentre and have had a raging migraine for hours (it's subsiding a little thanks to the DHC but that is *all*, it is not gone) and needed help to fill in the damned form to apply for a budgeting loan - because that is all they will give me, despite that meaning a wait of a week and more likely a lot more.

I !!!!ing hate bureaucrats, and my head hurts DD:

raeh

Kass im so sorry you feel so bad i was very lucky that i got mobility dla 1st time i applied and have had it renewed 3 times now, i cant get care as i can make a meal. I have also never said i couldnt walk however many yards as i can walk fine, my problem is i cant walk without pain and its severe even if iv just set off? and that leaves me exhausted, iv always been very honest with what i can and cant do but pointed out everything i can do is always accompanied by severe pain and that leaves me beyond exhaustion afterwards? sorry blathered on about me again there i think i keep doing that sorry! anyway good luck with it and keep positive and just write everything down that you think will be useful to them even the way an illness like this leaves you feeling, i always write about the discrimination of people not 'seeing' my pain and how that makes me feel. [off i go about me again]

unity i hope you manage to get a better night tonight its exhausting isnt it to have those dreams and then the disturbed sleep as well, i get so im scared to fall back asleep. I know someone has mentioned listening to something when falling asleep like music but maybe audio books on an ipod would let your head think about other things? i hope you managed to catch up on some sleep

LW im glad you had a lovely evening out what a nice idea giving a plant.
I'd be interested to hear mr lw's theories

CwtA wrote:

If you want anything pummeling, I'm your gal!

i'm going to store this little titbit of info away somewhere safe for the next time dh annoys me

hi saffie hi sue and hi to everyone i havent remembered lol

trialia i hope you can get your glasses sorted wouldnt your optician let you have some and pay later or weekly maybe? they obviously know the problem you have without glasses? i darent go and have mine tested as i just cant afford any new reading glasses :rolleyes: the test cost enough as it is

seaside if you are about please tell sharon shes still in my thoughts always i hope shes managing to stay strong xx

right must think about feeding the kids, im feeling tired so iv just shoved spuds in the oven those and cheese and beans .... nice healthy meal [as well as easy]

saffiedale_2

IM SURE IM GOING MAD??? I WAS SAYING POOR SUE... YES SUE I KNOW YOU GOT PROBLEMS. BUT I MENT SHARON:rolleyes: . COUDLNT ONE OF YOU PUT ME STRAIGHT? LOL. OR MAYBE THE FOG AS GOT TO ALL OF YOU LOT?:eek: IV LOST THE PLOT.....:D SORRRRRRRRRY ALL.