Cfs & life!!!

willa

mardatha wrote: »

I'm quite lucky with my gp, in that they dont disbelieve me. They sit back, fold their arms, and say "there is nothing we can do for you, we just don't know enough about ME yet". But this is a very rural area with a small scattered population, and quite a few people in the practice have it...so there must be a huge amount of sufferers nationwide. I don't want to get into how soul destroying it is cos I'll just get meself depressed...but you will need to use all of your mental strength to fight this. Stay positive and stay fighting !

What a reasonable comment from your GP! How refreshing.
I think mine is 'humouring' me, even though I got my diagnosis from a hospital specialist. But I'll leave the details of that for another thread!

jazabelle

magsiebee wrote: »

There's no need to be nasty!

I wasn't implying for one moment that heat pads are the answer to control ME or that they will work for everyone! I was merely suggesting a cheap and easily available method of pain relief for her symptoms that are identical to mine and quite honestly anything is worth a try when you're in pain! I have other information that other ME sufferers recommended to me that I would like to share with the op if she chooses to contact me. I was only trying to offer her some encouragement too seeing as my illness is under control now and I have been through what she is experiencing now.

I didn't expect to be ripped apart for posting!

What is the matter with some people on here? We're all supposed to be helping each other aren't we?

I won't be posting on here ever again.

I didn't mean to be nasty, and sorry if it came across that way. I was just worried you were giving the OP false hope. I know when I was newly diagnosed, and to be honest now some of the time, if anyone else with it had said they had found a way to control it - I would have been so excited, and then so let down when it didn't work for me.

I just thought the way you phrased it saying there was a way to control it, should have been that you have found a way to help, because it likely won't work for everyone.

Paparika

Cotton wool katie,

relax and take a deep breath, we won't judge you here, i'm a fibro sufferer, work didn't believe me when i was ill and tried the capability procedure on me, which if the dozy boss had read first before giving to me would say if someone is ill (not a cold or cough, but has an illness) they should not have it.

Are you part of a Union, i recommend that if you can get someone to sit with you when you go into any meeting, don't go in alone, if you have no one to go with you with an appointment, delay the meeting (you are allowed to do so).

cfs is real, we all know that here, work don't understand because like a lot of our illness, they are not visible.

If you cannot stand work because of your illness, so sick, get sick notes, if you go onto ssp, you cannot claim esa until the day after your ssp runs out, or if you quit work becuase of illness, you will not be sanctioned.

you could apply for dla, but wether you will get that or not is not for anyone here to say, (becuase they won't know) you will find some on here tell you that you won't get it (i have it i have fibromyalgia), you will need DIAL or CAB to help with the forms.

More importantly, you have support here on D & D. we've been where you are and understand how you feel.


Ask your gp if they can refer you to a pain clinic, i have yet gone to any of my appointments, always sick at the time flu etc, but apparently they can help some people

willa

Paparika, that's interesting.
I don't know an awful lot about DLA but I was under the impression that you need to have a carer to get it. Also that you had to be on incapacity for a certain amount of time before applying for it. Is that right? (I've been diagnosed with both fibro and M.E. and I was under the impression I wasn't eligible).

TOBRUK

Hi Katie, I too suffer with ME and have done for 12 years. I was first diagnosed in 1997 by a GP but referred to a specialist who confirmed the diagnosise. Before becoming ill I had a good job with great prospects, working full time, a very hectic social life etc. In a short time I went from full time working to part time, and found even part time working was too much. Because of this struggle I then began working just two hours twice a week which even that became impossible - my employer let me go under health grounds. This was extremely upsetting for me. I lost my career and my social life very quickly.

I think it is important to say that there are different degrees of this illness. Some people can and do recover quite well while others don't. I am a very independent person and live alone but I have had to accept help from others which at first was very difficult.

At first (when diagnosed) I was in denial and was determined to fight against it, I wasn't prepared to let it beat me. However, this made my illness worse. In the end I had to accept that I had this illness - acceptance doesn't mean giving up! 12 years on, I hardly leave the house, some days are worse than others.

I am lucky in the sense that my GP is wonderful - it is very important that you have a GP who is supportive and one who understands.

I do receive DLA, both mobility and care but I do have another disability. I would advise you NOT to give up your job - if your employer wants to get rid of you let them retire you through health grounds (like me) and then you won't have problems in claiming benefit. Also, make sure you speak to your GP about your situation - tell her/him your fears if you think your employer is putting pressure on you or you think they want to terminate your employment.

If you were diagnosed by your GP, see a specialist to confirm your diagnosis - this will help you if you apply for DLA. I was turned down for DLA twice but went to tribunal and won.

I know how you are feeling (your whole world is falling apart) but stressing about your situation will only make things worse believe me.

I really wish you well.
Llinos

mardatha

I would agree with that 100%.

willa

"you could apply for dla, but wether you will get that or not is not for anyone here to say, (becuase they won't know) you will find some on here tell you that you won't get it (i have it i have fibromyalgia), you will need DIAL or CAB to help with the forms." - Paparika.

"If you were diagnosed by your GP, see a specialist to confirm your diagnosis - this will help you if you apply for DLA. I was turned down for DLA twice but went to tribunal and won." - TOBRUK

The OP is still working and not on incapacity benefit or ESA yet. This is the first thing to find out about (after going sick from work etc), not DLA, at least as far as I can work out. If anyone has been able to go straight onto DLA, bypassing incapacity benefit, feel free to correct.

Edit: Please see seven-day-weekend's advice above.

http://www.cqdx.gov.cn/Faq/Tax/200909/10128.html

Benefit enquiry line:

http://www.direct.gov.uk/en/Dl1/Directories/DG_10011165

seven-day-weekend

willa wrote: »

Paparika, that's interesting.
I don't know an awful lot about DLA but I was under the impression that you need to have a carer to get it. Also that you had to be on incapacity for a certain amount of time before applying for it. Is that right? (I've been diagnosed with both fibro and M.E. and I was under the impression I wasn't eligible).

You have to have care NEEDS to get DLA - you don't need to have a carer. Also you don't need to have been on IB at all as Dla and IB have totally different criteria. You can also work and receive DLA. You have to have had the care and/or mobility needs for six months (I think) to qualify for DLA, and they must be expected to continue for at least another six months.

Some examples:

My husband suffers a mental health condiiton. He can't work because he is ill, but is able to look after himself, so DLA is not appropriate, he is on Incapacity Benefit (now called ESA).

My son's friend is a wheelchair user who has both care and mobility needs, so he claims DLA, and because he is on high rate mobility, he has a motability car. He is not however ill, so does not qualify for Incapcity Benefit/ESA. There is no reason why he can't work, he just does not have a job at the moment.

My son's girlfriend claims DLA for her condition and still works a30-hour week.

willa

Thanks for the clarification seven-day-weekend.

fiestafantastic

I think the most important thing which most of the posters have said is in the beginning stages dont try and push through it. If you are kind to yourself now, the better the outcome. I know this will be more difficult as you have the responsibility of a husband and children but you are doing the best by them by taking it as easy as possible.

The citzens advice is the best place to go for benefit advice or other services you could try. They know the rules and regulations and can give you the best advice. Hopefully when you know your financial situation it will take the pressure off a little bit.

M.E. as an illness is not well understood by the general public so the fact people are not sympathetic is not a surprise and you should not take it personally. I know that doesnt help in that they will not help you at your work but dont take on their prejudice.

I think on the GP if you find one that is helpful stick with him. I think all the people on here have been through similar experiences and I think they would all be happy to offer advice and support including me. Dont ever be afraid to ask people for help. I have found that people with ME have been driven high achievers and find it very difficult to ask for help. There is no shame in it and if your GP or Citizens advice cant help then I am sure there is someone on here that can suggest something.