working full-time and scared

[chez79]

I have just realised I have and diagnosis confirms ME/CFS / (maybe Fybro) - I am 29 and have never worked anything less than full time - I think I have suffered with ME for at least 3 yrs, the last 6 mths have got worse and the last month much worse.  My back is so painful everyday with knots and sore points all over, spasms, pins and needles down my right leg and arm, kind of dead leg feeling (does anyone else have this feeling - I dont know if it is a trapt nerve or something, but dr doesnt seem concerned) - but why does it keep coming back over the last 2 weeks???.  Chronic fatigue throughout days and weeks, all different times, depression is now trying to kick in (I am prone to mild) and anxiety (prone to that too.), I have mild digestion issues, IBS symptoms, some abdominal pain, thrush every single month, etc...   I have such a responsible job with no possibility of going part time apparantly and I am so worried about what to do - dr just signed me off for a week to try re-coup, but cant even take the whole week off due to work.  My partner is understanding to a point, but I dont think he realises what I am saying when I say im scared about the hours I am expected to do - I am so on and off with symptoms, but most symptoms are there most of the time.......he says can you afford to drop in wage etc - we have a joint mortagage and bills like anyone else........I am so worried and dont know which way to turn!

[ginak]

Chez,

I have a ton of neurological problems that you describe in your post. I spent most of the weekend crying because I feel like I am losing my mind. The tingling, numbness, and migratory pain is driving me crazy. I am in the process of finding a doctor who is knowledgeable in EBV because I don't want this to turn into something else.

[VaBreeze]

I'm in the US and the Federal Law I spoke of apply here.  I do not have the knowledge whether or not the UK would have the same laws that are applicable in America.  You can find out by checking with your Human Resources office or by checking the laws you have there that protect those who may become disabled or need extended time off from work.

Here is the Co Cure listing for the United Kingdom.  I hope this help you.

http://www.co-cure.org/UK_ALL.htm

Best of luck to you and I hope you find some relief soon.

[chez79]

thanks for your good advice - it is taken on board.  

Are both of you in the US?  I'm in the UK and the doctors list seems to cover other places than UK and just in general things are done diferent here sometimes.  

I take it the Act is for the UK too?????

I will look into my insurance and ensure I am covered just in case.

thank u

[VaBreeze]

I can certainly understand your concerns about being able to continue with work.  Some employers are very understanding about medical illnesses and others aren't quite as nice about it.  

The Family Medical Leave Act was implemented in order for those with any type of medical issues at home (yourself, your children or your spouse) to be able to take up to 12 wks. at a time, without fear of losing their employment.  Your employer is not required to pay you for the time off, so if you have leave you can use that to cover the days you need.  Should you need more than the 12 wks. required by law, your employer can then terminate you.  Like PlateletGal has stated, it is a good idea to keep your insurance coverage and disab. benefits intact.  These will provide you some form of income should you become disabled.

It's very difficult to accept and adjust to finding out you have a chronic illness.  It is quite frightening.  It effects your life, relationships, finances...we can empathize with you totally.  Until research provides us with more answers and treatments we must live day to day and learn how to pace ourselves, but we don't have to allow the illness to destroy us.  Learn what you can about it and continue seeing a good physician who will work with you to keep you as healthy as possible.  

There are some nice, well-informed people here and you'll find good support.  We do care.

[PlateletGal]

Hi ! I hope that you won't stress too much because that is the worst thing you can do when you are ill.

I also have CFS and have worked many years with the condition. I would recommend seeing a physician who can help you manage your symptoms. To find a physician who is knowledgeable about CFS (and fibro), consider googling, "Co Cure's Good Doctor List".

Also... keep in the back of your mind (this will help) that if you have excessive absences due to your illness, you may be covered under the Family & Medical Leave Act. And also make sure you have continuous healthcare coverage and disability benefits (short term & long term). That will help you with your peace and mind.

I hope that you will stick around and keep us posted. We understand and we care.