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.

Who has had a card or not had one yet? I haven't had one, but then, I haven't sent my address to anyone yet.

I get cramp when tired - very painfull- feet and legs mostly. It wakes me aswell. I don't think I twitch. Dh (and Ds) do - dh is fast at falling asleep so would not notice if I twitched! My fingers occasionally do involuntary shivery things so I have to concentrate when doing anything delicate.

Solo I fear incompetance too - I know my brain runs flat just like the rest of me. it is the reason I cannot increase my hours - it would not be safe. Its harder to keep up to date (struggle to get to conferences or read etc) and frankly I can get muddled especially standing. When I first became ill the idea of early retirement was horrifying but as I still (4 years later) only work very part time I think it has half happened already.

Solo your sickpay arrangement sounds very poor - especially for those with ill health!

I was the last to receive a card, you were the first to send one I think, so you could send me your address to sort of close the circle IYSWIM? Unless anyone else wants in :)

I've had my card and did apologise upthread that I hadn't sent because I put it in my bag to post and forgot, I remembered writing it and putting it in an envelope, my brain clearly decided that it had been posted it has now been posted and should be received in the next couple of days

I had cards from family following my surgery so know how nice it is. If anyone would like a card sent I am happy to send one.

Twitch!! YEP THATS ME, I THOUGHT IT WAS A NEW THING..WAS TELLING DP AND HE SAID YOU DO IT ALL THE TIME.ITS VERY ODD!

Oh, odd about the twitching - am glad it is not just me! it wakes me up when I'm trying to sleep. It's really weird. Magso & Solo, PM me your addresses. I like sending things whether it's my turn or not.

Well I am back from the doctors. He signed me off until after I go to st barts. He said it was my choice really and seemed to think it'd be better for me to struggle on, because I'd stay in a routine and see more people

I am not convinced, but now I feel guilty for choosing to be signed off. I don't think he really 'got' how much pain I am in. I think he takes the view that it is the victim's fault for being too scared to try

Also have a voicemail from adult social care so I'm going to call them back and tell them what's going on. I really hope they can help somehow.

My GP has been like that in the past. He's very reluctant to sign me off until I have a complete breakdown. I am now learning it'd be much better to be signed off when I begin to feel exhausted rather than let it get much much worse, which I am sure means a longer recovery.

It pisses me off that people think it'd be better to continue pushing yourself. I know it's better to carry on & see people & keep busy which is why, when I get to the stage of actually saying I can't do that anymore, I really need help. Drs make me cross!

Don't feel guilty, fuzz. I'm beginning to think I need a term off. To get myself together and to give DS the support he needs. It's not really possibe & being signed off for a week here & there just leaves me worrying. Make good use of your time. Rest, relax & enjoy time with DH.

Thanks grockle x

I spoke to the guy from social care, he was really nice and asked lots of questions. He's going to speak to a few colleagues tomorrow about what could be done and then call me back, but he also gave me the number for local occupational therapy supplies - so I may be able to ask for things like a barstool type thing for the kitchen, instead of paying for one.

I haven't managed to get through to work yet though. I'm being a wimp. And I know it's only because I doubt myself after seeing the doctor. I am battling with myself as to whether to get him to change it, and go back on Monday, but what if I go back and then can't cope and go off sick again?

I am upping the amitriptyline again to 40mg.

Feel too rubbish to eat lately - most unlike me

fuzz dont go back...you might or might not make it throu the day but the little good the last few weeks have done will all be undone..please just forget about work until st barts, all the effort put into worrying are using up your little reserve..... see the next 2 weeks as the start of getting to the bottom of all this and geting the right support both physically and emotionally needed to get throu this living hell.

xxxxx

Thanks belle. I know you're right - it's just hard not to feel bad isn't it. And I do miss it. x

Have officially said I won't be in tomorrow, but also said I will speak to my manager to discuss in more detail. I will also tell her about the social services thing. Maybe then they'll realise how bad it's become - all the stuff the guy was asking, can you wash yourself, prepare meals etc, it is so embarrassing not to be able to do all this basic stuff! But at the same time it felt really great to be able to say it all out loud to someone who didn't judge - as they are obviously used to dealing with all that stuff.

That would help. I could do with a perching stool in the kitchen. And a stool in the shower so I can sit down. I'm glad you've been able to contact them. Don't doubt yourself.

Has anyone here had help from social services because of ME? (Sorry people may have already said this before - as usual my brain is being lame)

I'll obviously let you all know how it goes anyway, maybe others could try getting help too. Even if just one tiny aspect of my life could be made easier with their help it'll be worth it.

Indirectly I am getting some help - or rather ds is now getting one night a month respite ( he has sn) this is from the disabled childrens team. We only got assessed after I became ill and one of ds specialists wrote to them. They had ignored all my requests prior to that but took a dim view of me keeling over in charge of a vunerable child. It took just over a year to get that started. Without the help of the staff at the local afterschool club we could not have coped in that year as I was not well enough to walk or drive for pick ups for many months.
I have started to get help from the ageUK carers scheme ( for carers who have just come out of hospital) which is lovely. I wish that had been available 4 years ago (when I came home after a long stay in hospital with pneumonia and various organs misbehaving)- perhaps I could have avoided getting ME! I think a mothers home help would be good for all of us! Perhaps we should write to someone ( goodness knows who) to suggest it!
Hope you all have a nice weekend.

I could do with someone popping in every now and then to hoover or walk the dog. Or, on a really bad day, to cook DS his dinner. He makes his own beans on toast but he's only 7 and it seems very sad that he has to fend for himself when I'm really ill.

Good idea, Magso. If only we knew who. If I ever win the lottery, I'll start a fund

phone SS grockle - it took me months to finally sum up the courage to do it - I wish I'd done it straight away!

you never know, they may find a way of helping you.

Magso, it's good you got some respite for DS, although that seems minimal. Certainly better than nothing though. It always saddens me to see how much parents have to fight to get things like that for their SN children. I see the families at work exhausted from caring round the clock & getting very little help. How more of them don't become ill themselves, I don't know.

I'm scared of SS. I don't know why - I have nothing to hide. But I have a constant worry that they would swoop in and take DS away. So I'd rather struggle on than risk that. I know it doesn't make any sense. I'm glad it has been positive for others.

I have that fear too. That they'll see the state of the house and think we are terrible people. I think a lot of people have that kind of fear. Both DH and I were abused as children and are terrified anyone would suspect that of us (all mixed up with a lovely dose of resentment that neither of us got the help we needed when we were young).

I have had SS involvement before - in my first pregnancy, because I had previous history of depression and self harm. All they did was send a guy round to interview us, and they wrote back saying they were happy that we would be good responsible parents.

They won't take DS though, they really won't - you aren't abusing him, he is safe, he has all the basics like food and school right? And it's clear how much you care about him as you are upset that he is suffering from your illness.

They don't just take kids away. It's actually a different type of SW anyway, the people I got referred to are called Adult Social Care (as opposed to Child) - it is all about me, not DCs, basically I am getting assessed because as it stands my life is making me ill.

I do understand the fear though. x

I understand the fear but for me its slightly different, I don't have my own children but I do have 2 step-children who's mother would do anything to make DP's life miserable so I worry that she will tell the courts that dp and I are unable to look after the children, dp works nights so I'm often the one who cares for the children overnight and during the day while he sleeps.

My reduced hours/wage has caused more problems, we have come to the decision that the only place we have left to reduce costs is on the heating so we have switched it off, our house is a 150yr old end of terrace cottage which leaks heat, we've done all we can to insulate it but it still gets bloody cold, its only been on for 2hrs in the morning and 2hrs in the evening but the latest bill is still to high so we are turning it off completely apart from when its freezing and we need it on low to stop pipes freezing can't say its something I'm happy about I'm so cold all the time as it is but I can't see any way round it, its either switch it off or double our monthly dd to cover it which we can't afford

Aren't there grants and stuff you can get for heating when you're in financial difficulty?

We have reduced electric bill due to the benefits we are on. We also get capped water bill because we have a medical reason for using more (DS's dermatologist told us he needs bathing every day).

Because we both work we aren't entitled to any help, we don't even get tax credits.

I can't see any other way we only use gas for hot water and heating and we need the hot water.

Mil has offered to buy us an oil filled radiator for christmas so we can heat the lounge at least.

The energy supplier wants to up the dd from £55 per month to £92 I either cut back or go back to normal hours at work, which isn't even a possibility right now.

have looked at other companies and they are all the same or more

Fuel prices are shocking. I'm worried because I get so cold & cannot warm up. I need the heating on 24/7 which obviously we can't do. I've been looking for a heated throw so I can be warmed from the electric blanket under the bottom sheet and the throw for the top but they're really expensive.

I'm worn out but in a good way today. DS has requested a pyjama day tomorrow so, whilst I should encourage him to go to the remembrance day service with Beavers, or to football, I'm not. I think we need a day together. We're going to make christmas cakes and watch crappy tv. I'm really looking forward to it!