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.

Already have a dog and rabbits and horses dp won't let me get any more pets

I still desperatly want a baby, I've spent years bringing up other peoples children and my dsc and long for one of my own but I'm not well enough and it would be selfish of me to add more stress to everyones lives, plus I'd have too find the energy to have sex

DP & I had a conversation about this today actually. I said he didn't seem interested in me anymore but he said he doesn't know when he can touch me because he doesn't want to hurt me. We talked a bit & I decided it would be better to have more physical affection & risk it hurting. DP seems unsure...

Its not that we don't have sex, its that half way through I just have enough and want to roll over and sleep DP is really good about it but its just one more thing to add to my things to feel guilty about list [sigh]

We got a dog too .........

I feel guilty too, smiling. It's fine when I have energy AND don't hurt but it seems rare these days to feel like that. There are some positions that are easier than others. DP is very kind about it and never hassles me or does anything to make me feel bad. It's just another area where I feel like a failure. I did google ME & sex to see how other couples manage it but I couldn't find anything. I will make a point of jumping on DP when he comes home tomorrow

I have a new thing this week - I feel MUCH better than I did several weeks ago but now have jaw ache when I eat anything vaguely chewy (muesli, bread from bakery, apples etc). It feels like my other aches so I am assuming it is an ME type thing. Might be good & make me lose weight?

www.actionforme.org.uk/Resources/Action%20for%20ME/Documents/family-and-friends/Let_s%20talk%20about%20sex.pdf

www.actionforme.org.uk/Resources/Action%20for%20ME/Documents/family-and-friends/Let_s%20get%20physical.pdf

wondered if you had read these..........x

Good links, thank you

I'll have a read of those. Although it's pretty hard to tell if being ill has affected that side of things, as obviously with DH having a severe injury sex hasn't exactly been frequent for a while. Starting to get back to normal now though, which is great.

Really really dreading work tomorrow. Back after 2 weeks off. Chest infection pretty much better, but exhausted and scared. I can't imagine being able to work 8.30-7! I don't want to go. I just want to stop now. It has really got to the point where I just think what's the bloody point, I am just going to crash again.

Hands and feet going a bit tingly and really really cold, DH gave me a foot rub and it's not made a blind bit of difference. What's that about?

Oh well. Off again today. Which means I will have to see a doctor again to get a new sick note. Don't know how long for. My manager had even suggested that I get signed off until seeing the specialist (2 weeks today) :( I will also ask to see my notes when I'm there.

So frustrated. I was all ready, although dreading it, but can hardly stand up today, feel shaky and my throat and ears hurt. I can't even imagine doing my first task of the day let alone a 10.5hr shift. This sucks. I'm just imagining the others at work saying oh she's off again - they are all nice people but they must get really frustrated. Especially if they don't really understand ME (some do as they have friends/relatives with it). This is so scary, I really don't know what to do. Good thing I've already got Xmas presents pretty much covered as I only have a little bit longer on paid sick leave (it's on half pay already). Does that mean I get statutory sick pay after that? How does that work, do I have to apply for it or something?

And my feet are still freezing despite wearing DH's very attractive thermal socks all night is this yet another ME thing?

Oh fuzz Big hugs to you. It IS all scary. When things are bad, the future seems so uncertain. And since we're unlikely to qualify for DLA or anythingm it makes work a huge problem. I KNOW I'd be better if I didn't work but since I'm the only one with an income, I have to.

I get very cold feet (& hands). I hate wearing shoes & socks but always have something on. I snuggle on the sofa with a hot water bottle on my feet or the electric blanket on in bed.

I feel really guilty for not going in. The person I spoke to is not the most sympathetic (but then she's like that with everyone I think!) so I feel terrible, like I'm skiving. But even DH said there was no way I should be in.

Then again I've been worse

Seeing the doctor tomorrow. Thankfully it's with quite a nice one, although I'm not quite sure yet if he really 'believes' in CFS.

So sorry fuzz

I'm constantly cold especially my hands and feet

I've worked 24hrs already this week, am off today thank god, have woken up with a mouth full of ulcers and no energy at all, my head, ears, arms, legs, neck and back ache and my throat feels like its been cut

Oh also meant to say that once your sick pay runs out you will get ssp which your work will sort out, you don't have to do anything, at least that's how its always been for me.

I only get 1 week paid sick then have to live off ssp which is why I have no option but to work, much as I'd like to take a few months off

Only 1 week paid? Yikes. I got about 2 months total paid full I think, then I have a month of half pay.

Thank you for my lovely card belle! Who am I sending the next one to?!

By the way I asked our family outreach worker to contact adult social care today. I don't think we need children's social care, because all the DCs' basic needs are being met (just about) - but at massive cost to our health. And of course if it gets much worse we will be unable to take care of the DCs.

DH been battling on recovering from his op, but got told today that the pain he's having is worse than it should be, it turns out he has torn a ligament in his knee. FFS!

Speaking of cards, I found the one I was posting in the bottom of my bag where I'd put it to post and forgotten about it, sorry it is now on its way

I've managed to only have 6 weeks off but it has been at huge cost to my health, I reduced my hours but am still doing 36hrs over 3 days and don't know how much longer I can go on for, DP works but I am the main wage earner so we are barely scrapping by.

just to add about benefits/sick pay etc i was medically retired from my job due to me and i receive incapacity benefit and dla. if anyone wants more details i am happy to pm.

I really don't know what to expect in terms of work - but I know I can't possibly do FT anymore. I think I am reaching the conclusion that it'd be best to just stop. But then, how can I when DH isn't quite physically ready to work either! We had a year or so living on benefits in between DH losing sick pay and me finally getting my lovely job (it was an apprenticeship to start with). I really don't want to go back to that, especially as I can't even continue with my degree at the same time.

Will pm you out2lunch.

Fuzz I am so sorry you are not well enough to go back to work. I have no answers but just wanted to send a hug.

I am recovering from half term over doing it and in my zombie state overlooked some important Mummy tasks (birthday cake making - how could I forget!!) Ds coped well by buying his own (with a little help from DH) and icing it complete with back-to front 13 (he has learning disabilty) and sparkler on top!

I hate being made to feel like I'm skiving. If I manage anything at home, like making a cake or going to the shop in my wheelchair I feel even more guilty.

I honestly don't know if I can manage it in the long term. Ideally, I'd quit but being the sole breadwinner, I have no choice. It means a lot of pressure & I hate having to work when I know I am really not well & it will make me worse.

Magso - cake sounds fab

Ooo, Dp just reminded me - I have a question for you all. Apparently, when I am falling asleep (daytime nap or nighttime), I get all twitchy. The muscles in my legs, arms, hands and toes twitch annoyingly randomly. I'm vaguely aware of it but DP is very aware of it. It never used to happen. Does anyone else have this?

Nope not me I'm afraid!

I hope I don't have to actually quit. Presumably medical retirement would be better.

(Can't believe I just wrote that! Medically being unfit for work actually being a good option FFS)

yy to the twitchy muscles and restless legs - sometimes i am awake all night with them

I get 6 months full sick pay, then 6 months half pay but on a rolling 4 years, so basically, if I have say 3 months off sick every year for 4 years, I then have to earn back my sick pay entitlement. The longest block I had off sick with ME was 7 months and I'd already had loads of sick leave leading up to that, so I was on nil pay, so went back to work...effectively, I wont get any sick pay until I've worked for 4 years with no sick absence. I didn't get ssp.
I wish they'd medically retire me, but they are more likely to get rid of me for medical incompetence, which would not entitle me to my work pension.

My legs kind of spasm when I'm tired. It's like the muscles tighten up and I feel jittery.