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Spoons! Support thread for CFS, ME & Lupus sufferers

(938 Posts)
Grockle Mon 24-Dec-12 23:30:26

Merry Christmas to you all.

Wishing you a happy, spoon-filled day.


Spoon Theory here

smilingthroughgrittedteeth Fri 25-Jan-13 21:54:16

Oh and grockle 8pm IS late

belleshell Sun 27-Jan-13 14:57:09

Hi All, hope your weekend as been blessed with spoon.. mine as been quite quiet but had a rare night of just me and ds which was lovely, but cost me a new coat " mum ive seen a really nice coat....." back to work tuesday, but i have actually missed it but have loved creeping back to bed this week whilst everyone else was out....

belleshell Mon 28-Jan-13 11:31:15

GGGGGRRRRRRRRRRRRRRRR!!! MY EXH is such a twat (sorry but he is) DS has a lump on his face, its nothing serious (i hope) looks like a fatty lump, but it is getting bigger and he is very conscious about it. so i text twat last night and asked for him to make an appointment, he never got back to me, so i rang and he said he would. I havent heard from him this am, so i made an appt for DS in a few weeks when exH would be home from work, i rang to let him know and he screamed at me he had made it and its this afternoon. i just asked couldnt he have let me know.... that man causes me so much stress....I so wish DS would come live in Yorkshire... he told me at the weekend that if i lived near his dad he'd live with me....

Sorry for rant,

fuzzpig Mon 28-Jan-13 13:25:37

Aargh what a pain!!!

Just popping in briefly while my 3G allows it... just had my assessment with a psychologist who specialises in treatment for CFS, at st barts. Will explain more later.

Megsdaughter Mon 28-Jan-13 14:36:37

Just a quick hello. Been really busy trying to finish a quilt for a new baby. DH being away and being snowed in.

Grockle haven't forgotten our MFP have been reading your updates and your going really well smile

Grockle Mon 28-Jan-13 20:33:12

Oh Belle sad

Thanks Meg, it says I'm eating too little now but I've lost almost half a stone in a week. I'm not hungry & am not missing out. I just need to swap my high calorie snacks (mini crunchie, crisps, cake etc blush) for more nutritious things. Are you managing ok?

Hope all's ok, fuzz.

I've got my appointment with the rheumatologist on Weds. DP always comes with me but since he's fucked off not, I'll be on my own.

I'm exhausted & am beginning to ache again. My legs feel heavy & I am a little worried I am heady for a big dip & will get really ill again.

fuzzpig Tue 29-Jan-13 07:09:10

Sorry you are in a bad way. Possibly a good thing in terms of seeing the rheumatologist? Better they see you in pain than in a good phase IYSWIM. What are you expecting to happen at the appt? I've never seen one before so don't really know what they do. I hope they are helpful anyway.

Meant to come back last night but was so exhausted. Here's what happened yesterday:

Had my first meeting with the psychologist at the CFS clinic in st barts. From what I gather he's a specialist; at least I think he only sees people from the CFS clinic rather than doing general therapy. Basically it was an assessment to see how they could help. We talked for about an hour.

He thinks CBT will definitely help me deal with loads of issues - not just the CFS itself but all the MH problems I've had, the childhood abuse etc. He said I seemed very positive about tackling the issues. I think I am - I've been ignoring everything for about 7 years (since I outgrew CAMHS and therefore stopped seeing my brilliant psychologist there) and now I feel ready to confront it all. Unfortunately it's taken a serious illness to get to that stage!

The really exciting news is, I have a place on a group therapy course - starting Friday! shock It runs for 8 weeks (2.5hr sessions) and will be about 10 people plus a psychologist and a physiotherapist. There was no pressure for me to attend (as I'd already said I do find social situations difficult) but I practically bit his arm off! I can't believe I will be meeting more people with CFS. The group covers different topics each time but basically the aim is to learn to cope with symptoms better, and generally to manage the illness and be assertive etc. It's in the mornings so will cost somewhere around £300 in transport shock but I think it'll be worth it. After the course is finished, I will then be getting some individual therapy.

Got home pretty wiped out and my chest, which had been getting better surprisingly fast, was worse again yesterday. I blame the cold weather and traffic fumes. Anyway, I'd been asked to phone work, and we decided to count yesterday as Annual Leave rather than sick leave. I felt pressured to do this though. When I first mentioned yesterday's appt I was told that if I was well enough to go by train then I was well enough to be in work sad I don't think that follows really?! If I had a broken arm I wouldn't be penalised for going to an appt, would I? And if I had a car it seems nobody would've batted an eye hmm

Anyway I then said I will be in today which I then really regretted as after being home a couple of hours the day caught up with me and I am now in a lot of pain. Half day today though so I will push through. I also need to sort out my leave for the support group appts (thankfully every other Friday is my day off anyway, although goodness knows how I'll manage with doing something quite strenuous on my day off rather than resting).

Got to go now as I'm still in my jammies on the sofa and need to leave in under half an hour blush

Hope everyone has a good day xxx

smilingthroughgrittedteeth Tue 29-Jan-13 07:54:38

fuzz glad yesterday was successful and the group therapy course sounds interesting. My mum is a bit like your work in terms of logic, she keeps asking me how I can find the energy to do things like walk the dog but can't manage to work more than 15hrs. The poor dog is lucky to get a 10min amble down the lane with me sad its hard not to take comments like that as harsh criticism, before I got ill it wouldn't have bothered me, now I see double meanings in everything people say to me, I'm paranoid that people think I'm faking!

grockle sorry your not feeling great but I agree with fuzz its a good thing that the dr will see you when your in pain rather than you feeling ok when you see him.

I am exhasted, between working and looking after DP I haven't been resting as much as I should, everywhere aches and I feel like I could sleep anywhere, I'm sure I fell asleep on the school run yesterday standing up on the playground.

CFSKate Tue 29-Jan-13 11:19:07

SirBoobAlot - yes, the ME conference tickets are not cheap, but they do them as cheap as they can. At least 6 speakers are coming from outside the UK, so I guess that puts the costs up. They do usually produce a conference DVD for about £10 if you pre-order which is very well produced and watchable.

Grockle Tue 29-Jan-13 21:20:01

I'm so glad it went well, Fuzz. Well done.

I've got no idea what will happen at my appointment tomorrow but I'm hoping it will be a proper diagnosis for something & some good advice about what I should do to manage better & maybe some better sleep & pain meds.

Hope everyone is ok

Grockle Tue 29-Jan-13 21:23:44

Smiling, I sometimes fall asleep when standing or sitting upright. Hope you can rest soon.

fuzzpig Tue 29-Jan-13 23:01:32

In bad way tonight. Can't sleep for crying sad I don't even hurt this evening really, just feel so sad and alone. Work is shit. I don't belong there anymore.

Putting a DVD on the laptop to try and distract me enough to sleep. Long day tomorrow.

Good luck at your appt grockle, will be thinking of you. x

magso Tue 29-Jan-13 23:16:13

Oh Fuzz hope you get a good sleep and feel more positive tomorrow. We are expected to use annual leave for medical appointments and treatments too so it is not just you. It's because that's how it's done in Europe I think, the exception being those that relate to pregnancy. I always find appointments exhausting too.
Hope your appointment goes well tomorrow Grockle.
My attempts to loose weight are not going well and yes it's the unhealthy snacks that let me down.

belleshell Wed 30-Jan-13 14:24:03

Hi Fuzz, you fit here with the rest of us, who from time to time wonder just where do we fit in. As for work.......there is always and answer, going to work is making you ill. However i am aware of just how important work is to us sometimes no just the obvious financial benefit, but my job is what makes me me, i love been a mum, sister daughter, partner, but work is what i do for me........ long term sick would give you the time to get strong again, but without giving up your job. Maybe 2013 is fuzz year, to get strong, the group sessions are a starting point. ((((((((((((((HUGS)))))))))))))

Grockle hope appt went well.

Sppons to the rest of you xx

fuzzpig Wed 30-Jan-13 16:09:08

Well I'm coping ok today, DH came to see me at lunch which was nice. Taking it relatively easy. I really don't want any more time off before my interview on Tuesday (for the part time job)

Grockle Wed 30-Jan-13 20:28:09

Sorry you had such a bad night, Fuzz. I agree with Belle - make this your year...your year to get better and change things. Hope you have a better night tonight. I'm glad your day was ok.

My appointment was alright. I forgot everything I wanted to say and now have a million questions. It was one of those 'we'll see you in a couple of months' appointments. But at least I have a firmer diagnosis: Mainly fibro with a bit of Lupus hmm

fuzzpig Thu 31-Jan-13 08:30:25

Eh? How can you have 'a bit' of lupus?! confused I thought you either have it or you don't!

Good news about the FM diagnosis though, is it official? Will you be able to tell your manager etc?

I am really tired today and am taking DSDs shopping after work! (Clothes for work experience in a couple of weeks - they are both doing it at my DCs' school which is really exciting!)

fuzzpig Thu 31-Jan-13 10:47:16

BTW if anyone has a kindle or kindle app there is a book out called something like 'chronic fatigue syndrome treatment guide', it is currently £1.93 on kindle so worth a look if you're interested. It looks like a recent one.

Grockle Thu 31-Jan-13 20:21:29

Well, yes, fuzz, me too! He said my blood tests were iffy & indicate mild Lupus but that my main problems are probably from Fibro.

How did shopping go? I'd love a SD to go shopping with! Thanks for the book suggestion - I might have a look.

fuzzpig Fri 01-Feb-13 06:05:24

Didn't go shopping in the end as DSD1 is ill - hopefully we will all go on Saturday. Was actually relieved as I was really worn out - I was asleep on the sofa before 8!

Woke up at about 4 this morning though, have been trying to get back to sleep but have now accepted it won't happen as I have to get up soon anyway and get ready for London <eeek>

Wondering if I'll get a seat on the train or tube...

Grockle Fri 01-Feb-13 07:41:36

Hope London is ok Fuzz. Spoons to everyone.

I told my rheumatologist that I am in bed by 7 and often asleep by 8 & he said 'Well, that's not too early.' hmm I used to put DS to bed at 7 then go and start working again until 10-11 & then read for a while. I was rarely asleep before midnight & being in bed by 11 seemed like an early night.

I think it's all relative... he asked how I was doing & I said I was having a good phase... but there was no time to explain what that means for me. I'm still in pain every day and have to pace myself. I fall asleep at work...

fuzzpig Fri 01-Feb-13 16:37:07

I wonder if the rheumatologist was just trying to reassure you, about the sleeping at 7 thing. I've found that a few times - you tell them something but when they try and make you feel better it actually makes it feel worse, because what you really need is someone to say "yes, that's not normal at all, and it's not surprising it makes you feel bad" IYSWIM? It's like validation that you are ill.

I'm on the train home now, it was really brilliant. Everyone was too nervous to speak to each other before we went in but in the break we were all chatting over tea etc, and it really didn't feel like we'd only met an hour before! I had lunch with one of the others (everyone else had to get to work etc) and we ended up chatting for ages.

In the session we were mostly getting to know each other but also talking about what makes you vulnerable to CFS; they described the bio-psycho-social approach and we were discussing which category things went in. Got some stuff to read and an activity/sleep diary to fill in over the week, as well as yet another mood/symptom questionnaire.

Feel quite refreshed and positive. Only bad thing about today is my chest, it really was getting so much better but I am now wheezing and have vile tasting crap in my throat angry. Seeing as this happened on Monday too I am pretty convinced it's the air pollution that has this effect on me. I live in a quiet culdesac of a leafy suburb, so by comparison central London is literally the Big Smoke sad

Grockle Fri 01-Feb-13 18:32:12

Yes, I think that might be it, Fuzz. I did say that I felt like it was all in my head & he asked if him sending me a letter with what we've discussed would help, so that was nice.

I'm so glad today was ok. It sounds very promising. smile

Grockle Fri 01-Feb-13 18:35:13

Ooo, in other news, I had a letter saying I will have a medical at home next week - an ATOS thing for my DLA application. I don't know what happens but I'm fairly well atm so am very worried.

smilingthroughgrittedteeth Fri 01-Feb-13 19:40:04

Glad today went well fuzz.

I've had a busy day took fil to day care center this morning then helped my friend move then picked fil up and now home curled up with dp.

Friend is staying with us for a few weeks till she finds a house to rent

Dp's back is still bad the Dr thinks he has displaced a disc so he is in agony and unable to move much.

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