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

(994 Posts)
Grockle Wed 11-Jul-12 22:27:59

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.

Solo Tue 13-Nov-12 23:17:54

Grockle I am having to retrain in my job as I've been off on mat leave and a career break for 6+ years. I am a prison officer and it's very demanding.
During this career break, I have for the first time ever, been on benefits. It's an eye opener and a minefield! I too have a mortgage and my determination to keep my house has let a lot of other things suffer. I will tell you what I know, but you need proper and knowledgeable advice really.

I do believe that if your gp will help start the ball rolling, that you can get ESA, read about it here. I didn't have this.
You can, once you have been claiming for a set number of weeks (this was for me on Income Support/Job seekers allowance) claim for part of the interest (if you haven't remortgaged!) to be paid (hellish paperwork!). I had remortgaged and personally have to find 4/5ths of my mortgage payment myself ~ hence cutting back on so much else. You would probably also get CTC and possibly your council tax paid.

Graded exercise is what 'they' would have us do, but it's too much most of the time sad I just want to be normal again!

fuzzpig Wed 14-Nov-12 09:14:53

Problem is 'they' make you feel guilty for not trying hard enough. Therefore it's your own fault for not doing enough. Even though from what I've read, ME isn't caused by deconditioning. <facepalm>

Useful info about benefits. As I said we are nowhere near the property ladder and now possibly never will be. We are on the housing register (on Band B, as we are technically overcrowded because the DCs' room is tiny) which will probably take at least 2 years. We don't earn enough now, but in the future we could possibly take part in shared ownership of a council house. That's about as big as my dreams are going to get for now!

Apparently social services could possibly help me apply for a bungalow instead though. No idea if that'd be quicker or not. It's really humiliating to have to ration the number of times I can use the stairs in a day though, and that part of the illness seems to be getting worse.

belleshell Wed 14-Nov-12 13:16:49

i work with some amazing women ( and men too!) 2 of which are going through treatment for breast cancer one is 48 the other 39..... i often feel how pathetic i am, when they are facing such a terrible unknown future.......yesterday i found out that the 39 year old has had some terrible news in that the cancer as returned for the 3rd time..........how can i moan about achy legs, sore throat, and everything else when she is going throu all this......... life is so unfair.. angry

Grockle Wed 14-Nov-12 21:43:52

Useful info, thanks Solo.

Life is unfair. A lovely friend of mine died on Sunday. She was 19 & should have had a whole future in front of her. Instead, she's been very ill for many years, undergone multiple brain surgeries and for what? To die anyway sad

It is hard when my life is controlled by such minor issues as aching & tiredness. I know I have much to be thankful for.

Namechangeforapropertythread Wed 14-Nov-12 21:50:55

If anyone is in Dorset it is worth contacting the DorsetMeSupportGroup. I think theres a nominal joining fee. They have a paid benefits advisor who can come to your home and properly sort things out, do your applications for you and attend appeals, negotiate on your behalf etc. Very much worth it.

Grockle Wed 14-Nov-12 22:06:17

Ooo, I have their pack at home. I keep meaning to fill it in. That's very helpful, thank you

Namechangeforapropertythread Wed 14-Nov-12 22:17:23

Definitely do it. Don't send off anything official until you have. Midge (or I think theres another new one) knows exactly how to help, and it also helps to have noted that youve had someone to help you, if that makes sense.

It also is such a practical help to have someone else actually conquer the form... and physically write it etc.

Namechangeforapropertythread Wed 14-Nov-12 22:17:58

(Just realised I'm on my name change - but I've posted on this thread before a while ago..!)

Solo Wed 14-Nov-12 23:54:09

The exercise thing is supposed to be about managing the illness and indeed! getting well! hmm

I have thought on more than one occasion that I would be better off renting as they would probably have paid the whole of my rent, therefore, I would have much more money in my purse. My house is falling to pieces (literally!) and I don't have the money to sort it.

Belleshells do not make light your own plight. ME is a very real illness and just because you can't see it and it can't be cured in a way (and of course, I don't wish it on anyone! I have lost many, many loved ones to cancer) that cancer can often be...in some ways, does that not make ME worse in terms of treatment? I am not sure this is coming over as I want it to, but what we have is invisible and therefore not a real illness/disease to so many people sad
I am sorry that your friends are ill with cancer; I hope they recover well.
I'm sorry too that your friend died Grockle sad

I have a sore throat tonight.

belleshell Thu 15-Nov-12 10:53:01

Thanks solo, i think im just feeling so disalusioned (spelling ??) i went to bed at 10 pm on tuesday evening and i have been there ( other than 3 hours yesterday afternoon since. Im up now because the dog as thrown up gain all over bedroom wft... why do i feel so washed out, it surely cant be the 4 hours i have done in work...im supposed to be going to a conference tomorow morning in coventry, something i really want to go on.im not sure that even if i get there it will take any of it in.

ALso just read DD phone she told her dad last night she hates me, im a bloody moody cow and sleep 24/7...............nice, all this becasue i wont let her have school dinners......

Grockl so sorry about your friend...xx

Solo Thu 15-Nov-12 11:32:24

How old is your Dd belles? kids can be very insensitive can't they? and if anyone looked at us, they'd never know we were ill, so it doesn't make any sense to them that we just want to sleep and rest and we get moody etc...I have no suggestions I'm afraid. My Ds is 14 and hormonal! my Dd is not yet 6. They just can't understand and they've known nothing else really...I do push myself though, so it impacts on them in the least possible way.

belleshell Thu 15-Nov-12 13:06:15

DD is 11........i usually do push on, but this week i hjust havent been able to.im also trying to save as much energy for the weekend.i think i might have some viral sinus thing (runny nose sore throat ect.) and its that thats causing headaches, and i still arent back to my feable normality....... gunna crawl back upstairs for an hour or too

Grockle Sat 17-Nov-12 03:52:04

sad belle. Children can be horrid sometimes.

belleshell Sat 17-Nov-12 18:50:32

smiling................thank you what a lovely surprise!!

smilingthroughgrittedteeth Sat 17-Nov-12 23:44:30

Hope it cheered you up a little

belleshell Sun 18-Nov-12 10:11:22

no not a little a lot............... grin

smilingthroughgrittedteeth Sun 18-Nov-12 11:10:51

Good I'm glad grin

I would very much like to send a christmas card to whoever would like one so please pm me your addresses if you would like one, you've all helped me sooooooo much over the past few months that i would just like to thank you all in a small way.

belleshell Sun 18-Nov-12 19:02:37

i 2nd that smiling, this is the only place i can be honest without fear of been judged, althou my DP is fantastic......

so can i have address too please, xx

Grockle Sun 18-Nov-12 22:40:21

Me too. Thank you all for listening to me rant & moan blush

This week will be my first full week at work since the beginning of September. I honestly don't know how I will manage 4 long days. DP let me sleep in this morning & I didn't wake up til almost 11 blush I could easily have slept much longer.

Love & spoons to you all x

smilingthroughgrittedteeth Mon 19-Nov-12 08:12:28

Good luck at work Grockle, I couldn't manage 4 days, 3 is hard enough.

I had a really busy weekend and am paying for it today, my head is pounding and every part of me hurts.

fuzzpig Mon 19-Nov-12 08:37:46

Best of luck today grockle thanks it really doesn't seem like a long enough phased return, I hope it goes well. I am really really sorry about your friend, what a waste of a young life sad

I am officially off for 3 more days, I am supposed to go back on Thursday, the day after London. Dad has said he will drive me to/from the hospital so that's a big relief. I love travelling round London on the underground but I think it'd be too much right now.

We've had a busy few days here, landlords asked to come round and see the new windows before paying, so we had a panic and did loads of tidying and cleaning! DH did much more than me and is really suffering, especially as the DCs have been unwell so in and out of our bed for several nights (it doesn't bother me as much as the amitriptyline makes me sleep so deeply blush I'm on 40mg now). I actually don't feel so bad right now!

I think now my chest and sinuses have cleared I am regaining some energy. I have over the last few days put on/hung out laundry, cooked with the DCs, hung up/folded loads of clothes, dusted and polished, ordered and unpacked groceries, sorted clutter, done a charity shop run in dad's car, been very briefly to 2 supermarkets in dad's car (they didn't have any onesies either though sad) and did bath/bed with the DCs.

I know most people do that in one day don't they - but for me it's a massive achievement, and touch wood, so far I am not suffering for it. I think I managed to pace myself through it. Stairs are still evil bastards angry but that is the only bad symptom at the moment.

smilingthroughgrittedteeth Mon 19-Nov-12 09:49:26

My weekend consisted of....

Fri- slept till 10am, took the dog for a 20min walk, had a sit down and some lunch then popped into town to finish the last few bits for christmas, did horses then went home and slept on the sofa for 3hrs.

Sat- slept till 11.30, cleaned out the rabbits, made a pie, cleaned the bathroom and walked the dog, was in bed by 8.30

Sun- slept till 10, walked the dog, went to supermarket to pick up a few things, had lunch at PIL, did the horses, wrapped some christmas presents, in bed by 9.

Written down it doesn't look much and is certainly no where near as busy as weekends used to be but I feel exhausted.

DP has been signed off sick because he has tendonitist, he's been told if he doesn't rest his wrist completely he will end up having to have surgery.

The handbrake on DP's car snapped yesterday (the cable) and my car needs a new exhaust, we just can't seem to catch a break at the moment sad

Before I got ill we were fairly well off but me being off sick has eaten all our savings and working reduced hours means we have enough to survive but any extra expenses bring us to breaking point.

fuzzpig Mon 19-Nov-12 11:16:13

I know the 'can't catch a break' feeling all too well sad we had started saving £100 a month in a new ISA but any unexpected expense means it gets eaten into. I'm glad we prepared for Xmas early, as the next few months are going to be very tight, my sick pay is now at half wages. We have never been late on the rent but I will have to tell the landlords what's going on soon.

Just had a very disappointing meeting with social care person. Basically there is no help available, as I am not bad enough. All they could really do is put us in touch with an agency for a cleaner but she estimated £15ph which is a lot to us, She did say that I will get an occupational therapy assessment if I get a dx, so things like a perching stool should be fairly easy to get.

She also said I should ask the consultant about housing, she reckons if I get them to write a letter we may be able to state that our current house is making my health worse (stairs) and we could get moved up the housing register as a medical need. Normally only the elderly are entitled to bungalows though and I can't imagine there are many around. I wouldn't want to take a house that is fully kitted out for severe disability as most of it I don't need, that would be unfair. I was describing the way I get stuck on the stairs sometimes, and have to ration how many times I go upstairs, and she said that element of my illness sounds severe.

Obviously I am grateful that I am not severely disabled enough to need the most support! It is just frustrating as I feel stuck in the middle, I am not able to live life easily but there is no help available, people like us just have to struggle permanently.

magso Mon 19-Nov-12 19:12:18

Grockle so sorry about your friend, and good wishes for a very gentle return to work.
I had exspected to start with CFS teams physio ( I think a modified GET) in October but I have finally got an appointment for the new year. I'm a bit disapointed because I was hoping to be fitter ( I am very deconditioned after 4 years of very little activity) ready for Christmas. I live in hope! Off to GP today to see if I can do anything about the tachicardia - its postural so prob not!

magso Mon 19-Nov-12 19:22:42

Smiling and Fuzzpig didn't mean to ignore you both - just failed to refresh/ update again!
I agree about being stuck in the middle - not well enough to be fully able to work (earn) and run the home but not ill enough to get help- even though help is needed.

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