People with CFS/ PVFS/ ME - how did you get diagnosed?

[Grockle]

Long story short... After 2 years of symptoms, many blood tests, physio, chronic pain, constant fatigue of varying levels & GP not finding anything wrong, I am now depressed. It wasn't getting better with meds, so I;ve seen a psychiatrist who suggested it could well be CFS so has referred me back to the Rheumatologist.

I'm tired & just want to feel well.

[Grockle]

Sorry Belle

HTF do I manage work & DS as well as fibro/ lupus/ whatever?

I. Can.t. Do. this. Anymore.

[belleshell]

Grockle,Fuzz..................and everyone else that is managing work.....not long now till xmas rest.be kind this year and give your self some you time...even if its 10 mins in the bath.... ive asked my kids to give me one day without arguing..............im on a count down to 10.10pm tomorrow when other than taking DD to manchester to meet her dad on sat, im done for xmas......i just need to do the annual sprout fight ( which i quite like really) then xmas is done..im hurting today, and really didnt want to get out of bed.......

[Grockle]

I'm not managing work

I feel so unwell atm. I daren't have more time off because I've met my first 2 trigger levels and the next one is serious apparently then the next one means discussions about being fit to work. When I am well, I AM fit to work. BUt currently, I'm not.

I've been at work today with hideous chills & hot sweats. My legs hurt so much. I came to bed at 6 tonight, DS put himself to bed & I've just woken up shivering & drenched in sweat. Sorry

I just had to crawl along the landing to check that DS was ok.

WTF do I do? DOes anyone else get this and how is it managed?

Things with DP are shit, I can't cope with anything. And I'm sick of feeling so ill.

[smilingthroughgrittedteeth]

I don't have any advice for anyone, I've spent half the day curled up in agony and the other half passing out

I had to get my boss home from work early because I had to go home, and wake DP up to come and get me because I wasn't safe to drive.

DP wasn't happy with me because he said i shouldn't have gone into work in the first place, but what am I supposed to do? I can't take 3 days off every month can I? I didn't feel dizzy or faint when I got up just tired and sore, if I'd felt faint I wouldn't have gone in.

I slept from 1.30 till 9pm and am now wide awake which means ill struggle tomorrow.

My legs feel heavy and achey and my back is really stiff and sore

[fuzzpig]

((((Hugs all round))))

Shit day here too :(

[GoodKingWenSOLOslas]

Hey ladies! read THIS it might cheer you up a tad. It has me!

[Grockle]

Oh smiling

I went to work today and was sent home within 10 minutes. I can't do this. I need my job. I want to be well. Tomorrow is my birthday and everything feels shit. This is not how life was meant to be. My poor DS has suffered and there's no end in sight

[smilingthroughgrittedteeth]

Grocklea don't apologise for moaning we all understand.

I've had a better day, slept till 11 then went to tesco to get the last bits for christmas and have spent the rest of the day curled up with DP watching christmas films, he's off work tonight

[fuzzpig]

Sorry grockle :( I guess it is good that they have seen you so ill though, if that makes sense.

I am not unwell enough to stay home now, but I just don't want to be there, which is not like me at all. I just want to run away from it and that really scares me. I hate having no life outside work, I can't even wrap presents. Trivial I know but I am totally failing at Xmas this year.

[smilingthroughgrittedteeth]

I know what you mean fuzz about just now wanting to be there, I love my job and have found ways of coping whilst there but I just want to be at home, its not just work I don't want to be ANYWHERE but home!

Got to work this morning and my charge has D&V, not what I need 4 days before christmas, I can't shake bugs off anymore

[smilingthroughgrittedteeth]

I'd like to add I feel desperatly sorry for her, I'm not just thinking of myself

She's sound asleep which isn't like her at all, she's usually a 7 year old whirlwind

[magso]

Grockle so sorry you are struggling and worried about work. Frankly it does sound like at present you are not fit to work (hugs)- (note the at present).
Hope you have a nice birthday, and feel better today.

[WhereTheWildOnesSnow]

Hi eveyone, Hope you dont mind if I join this thread.
I was diagnosed with ME 3 years ago after a 5 year year struggle. I am also awaiting referral to Rheumatologist as i have suspected Fibromyalgia too.
In the past 4 years I have gone from working full time to part time to having to leave altogether. I have 2 DC 9 and 5 and really want to get myself to a place where I can handle working again (part time).

Am now going to read throught his mammoth thread, it may take a while!

[magso]

Fuzzpig and smiling I can empathise- I love my job but have to brace myself to go, knowing I will be shattered for a few days after ( i only work 1 regular day - sometimes 2 thats the best I can manage). Work is part of the person I am.
I went home early 2 weeks ago - I was coming down with what I assume is this virus thing that is everywhere- but had not realised on waking because worse days, sore throats, fevers, aches, feeling like death, are part of my life. I just hope I did not spread the bug around!
Hope you all have a restful and lovely Christmas!

[smilingthroughgrittedteeth]

Hi WhereTheWildOnesSnow sorry you need to join the thread but welcome

[fuzzpig]

Welcome Where :)

Smiling, so sorry about the D&V thing - I am emetophobic so I share the worry! My colleague who I was with yesterday is off today having been throwing up all night :( I feel sick, but I think it's more the worry.

Only 1.5 work days to go, and DH is coming to meet me for lunch today which is great. I really thought I wouldn't get through this week but I think I can now. I caught up with my manager today and finally managed to ask to sit down at staff meetings - I'd been embarrassed about this but when I'm feeling dizzy I find it really hard (basically it's just a 15min thing before we open each day) and feel woozy and ill by the end, but my manager has said that if I need to I can just grab a chair.

[magso]

fuzzpig hope you get through the next day and a helf. I know just what you mean -I cannot stand and think/listen and start to feel very unwell after a few minutes. Its common sense to sit. All you energy and focus goes in trying to stay upright and fight the horrid feeling. The Gps is the worstybecause I have to stand to wait for the receptionist- sometimes for ages and have keeled over before I got to see the GP on several occasions!
Welcome Wherethewildonessnow. Sorry crossposted with you!

[smilingthroughgrittedteeth]

I can't stand for long either, 10mins and I start to sway, I've lost count of the amount of times DP has grabbed my arm to stop me falling over

Charge got up for a couple of hours and is now back in bed asleep, so I think ill try and have a cat nap before youngest gets in from school, I usually nap after morning school run and my head is starting to hurt from the effort of being awake for so long

Its my last day today until next fri, then I'm off again until the 6th Jan.

[GoodKingWenSOLOslas]

Hello everyone :)

I went back to bed this morning after the school run. Only for an hour and it wasn't great quality of sleep, but I've fought myself to not do it for months now.

Welcome Where :)

[belleshell]

Welcome wildone.......xx

[Grockle]

Welcome, wherethewildonessnow. Sorry you have to join us

Fuzz, back in the summer, when I was really struggling with everything, I ran away. I needed to get away...no-one was listening to me & I felt hopeless & scared. I stuck DS & the dog in the car & we drove 200 miles. No-one knew where we were but DP panicked & it got complicated. BUT I am very tempted to do it again. For a few days, I had nothing to fret about (other than being found) & we ate & slept when we wanted & did as much as I could manage.

I am failing at christmas too. By this time, I am usually ready. I haven't iced the cakes, wrapped presents, written cards or anything. I hate feeling so useless & disorganised.

My birthday has been lovely, thank you. And I have finished work for 2 weeks. Yay!

[belleshell]

Im am up and wide awake thanks to something spooking the dog, (who is now laid at side of me snoring!!. Grockle, Fuzz............how have you failed xmas....? ??grockle eat cake the yorkshire way with cheese!!! saves icing, and i havent even done cakes this year, much to my mothers disgust, i will do it next year! fuzz.you have been buying for months.....the kids and DH will love anything you have bought... I think for everything you have been through and still working (last day today i hope) you 2 have probably done more than others without this Fecking condition..........

I had counselling again this week (CBT!) i dont really think its doing very much, i know what makes me tired and i know i need to pace......but in the real world, i cnat take a 10 min break in the middle of a busy clinic, or school run, or whilst makeing tea!!! and it was suggested i iron whilst sitting down.. with my grip as it is the iron ends up on the floor at least once every session i do!!! ill end up with more scars than i have already.( i am becoming so clumsy!!)


What i will say is that when i visited the psycologist at my last ME group during a crash, ( i was crying so much i had snot!!!) the one to one we had helped me make the biggest decision of my life and one i havent regretted till now, and that was to move home.........he never suggested it just talked to me and i made my own mind up.it was almost like he gave me permission to come home....... so dont lose faith all with the groups.......i feel because what they tell me really doesnt fit with my life, (and i also tell my patients very similar things which i really need to change) i switch off.

I was congratualted this week for lowering my depression scores......im not depressed, but questions like do you look forward to social events are gunna score high (no's) when i cant literally get out of bed...

good ive ranted on there........sorry.

love and spoons to you ALL X

[fuzzpig]

Yes it is my last day today! And I'm actually awake enough to have a shower for once last night I only just managed to stay awake for new Big Bang Theory and went straight to bed. I actually managed to eat dinner for the first time this week.

I was just hoping to be a bit more Christmassy, because in the past it's been a bit like 'Sunday with presents' IYSWIM, we have no family here (we have DSCs on a separate day - which is always fab - as they spend 25th with their mum) and I struggle with the day anyway even before I got this stupid illness.

Haven't even decorated yet! House a complete tip again too even though we decluttered lots this year. I'm just doing the tree tomorrow, not the bannister etc like I often do, because I know my arms will hurt as it is. Need to wrap loads more presents, I have gone overboard again I don't even know what food we will have on the day!

Right I really need to get up now!

[smilingthroughgrittedteeth]

Imo its impossible to fail at christmas, all the presents you have brought and everything you do no matter how small will be done with love for your families, how can that be failing?

It took me 3 days to decorate the tree, DP put lights around the window and I have some christmassy candle holders on the fireplace, certainly not my usual standard but its good enough to make it feel like christmas.

Food in this house is from tesco, they make cakes so why stress yourself out making them. Get online and have everything you need delivered, millions of perfectly healthy people do it so how can that be failing?

[smilingthroughgrittedteeth]

Oh and in case that's not clear enough Grockle and Fuzz YOU ARE NOT FAILING ANYONE {stern look}