Cfs & life!!!

willa

Paparika wrote: »

No i was diagnosed by the rheumatoid arthritis consultant, as far as i am aware the gp can not make the diagnosis.

Whilst i was on ssp, i applied for dla, i had a set date before i was allowed to apply for esa, I made it clear i was on ssp and would not be returning to that work.

So yes i applyed for dla, before i appled for esa. you do not need to be on esa to claim dla, it's just the way it came up for me, whilst i was off sick, ssp was less that half my pay, i was fortunate to claim HB/CT to help me, then once ssp ran out i appled for the esa, HB/CT then went to full rebate.

'No' what?
I never said GPs make the diagnosis. They maybe do sometimes, but in my experience they usually pass it over to the specialists.

TOBRUK

Hi willa, I think Paparika was referring to my post here as I said that my GP diagnosed my ME before she referred me to an ME specialist who confirmed the diagnosis - it's just how it happened for me.

willa

TOBRUK wrote: »

Hi willa, I think Paparika was referring to my post here as I said that my GP diagnosed my ME before she referred me to an ME specialist who confirmed the diagnosis - it's just how it happened for me.

Thanks, but is confusing as my entire post is quoted and my question from before that seems to be being answered.
The meeting of the foggies perhaps.

TOBRUK

willa wrote: »

Thanks, but is confusing as my entire post is quoted and my question from before that seems to be being answered.
The meeting of the foggies perhaps.

Ha ha! Yes the foggies ... tell me about it!;) You're not alone, I have to read some posts over and over because I can't make sense of them and I know it's my brain that's the problem!

I can't read a book anymore because I can't absorb it properly, once I've read a page or two I have to go back and read it again!! I also have problems with watching films - half way through I just can't follow it!

Invasion

Hi Katie,

I have ME and receive DLA- highest rate mobility, and low rate care, and Incapacity benefit, which has now been replaced by ESA. I also suffer with vertigo as an ongoing on/off thing and have had constant headpain for nearly 3 years now. I don't know so much about coping with ME and a family, as I'm 18 and live with my parents who look after me, can't imagine having to cope with people being dependant on you!

I don't think that I would be as ill as I am if I'd being given better advice when first diagnosed, I was told to do half a day of school every day, no matter how I felt, this lasted for 5 days, and then I crashed, starting to do less and less and eventually unable to even go to school for one hour a week. I was bedbound for a few months and then started to slowly improve with pacing advice from my occupational therapist. I'm lots better than I was then, but still spend a lot of my day in bed, but also manage 3 hours of college a week. Listening to your body is really important, don't let what other people think make you push too far.

The basic advice for pacing is to do 75% of what you think you can do. Obviously pacing with kids can't be easy at all, but it's really the only way to manage ME effectively.

Good luck with this all

willa

TOBRUK wrote: »

Ha ha! Yes the foggies ... tell me about it!;) You're not alone, I have to read some posts over and over because I can't make sense of them and I know it's my brain that's the problem!

I can't read a book anymore because I can't absorb it properly, once I've read a page or two I have to go back and read it again!! I also have problems with watching films - half way through I just can't follow it!

I know TOBRUK, I had bad foggies for the whole day and night the other day. I've had it a lot before but never quite so constant as that. Quite scary. Feels like my brain is fried. :eek:

Paparika

sorry Willa

It looks like its starting to happen again.

what i am trying to type doesn't always come out right, I'm having a tough time with that at the moment, those that don't understand just assume I'm a troublemaker on this forum.

was having a conversation with the OH last night and i couldn't remember half the stuff i was trying to say, i kept saying, oh you remember that film, steel makers made redundant, then strip to make money...

It's either i can't remember what i am trying to say or i say it wrong and come across not as i meant to have said.

willa

Paparika wrote: »

sorry Willa

It looks like its starting to happen again.

what i am trying to type doesn't always come out right, I'm having a tough time with that at the moment, those that don't understand just assume I'm a troublemaker on this forum.

was having a conversation with the OH last night and i couldn't remember half the stuff i was trying to say, i kept saying, oh you remember that film, steel makers made redundant, then strip to make money...

It's either i can't remember what i am trying to say or i say it wrong and come across not as i meant to have said.

No probs Paparika, I seem to cause a lot of confusion on MSE myself and it's probably not even brainfog a lot of the time! x

Cotton_wool_katie

Hi all, thanks very much for all your help and concern.

At the moment i find it very difficult to slow down and perhaps come to terms with it, i just think im being lazy!
I know deep down this is not true but it is so difficult.

Thanks again everyone for your information and suggestions x

chuckie79

Hi Katie

I've had ME for 2 years now and been lucky that it has been pretty stable allowing me to work part-time. Pacing seems to be the thing for me but means in order to work I spend my time off resting a lot.

It is really difficult at first, not only because you're trying to come to terms with your diagnosis but also trying to find info and support. I was eventually referred to my local ME/CFS clinic but wasn't seen until a year after my diagnosis so had found a lot of info myself by then.

If work aren't being sympathetic then you need to highlight that CFS is covered by the Disability Discrimination Act (DDA) so they have to help you. Try and get some info off the internet to take to your employment meeting about CFS and the DDA.

Maybe one of the hardest things about diagnosis is that you have to do a lot for yourself because support is limited from professionals. BUT there is support on the web from forums like this and also

www.foggyfriends.org

Foggy friends was set up by 2 sufferers and it was my great source of info when I was diagnosed.

Good luck :kisses3: