Working with CFS/ME

Hi Iau,

I went through a similar thing as you.  I worked as a nanny and got Rubella and had to cut my hours down, as I was spending all my days off in bed..

 Then I had abdominal surgery and from then on it was Au revoir to work and life was never the same again.  That was nearly twenty years ago.

However, don't let that discourage you as things have advanced since then and even though doctors can still be extremely ignorant about this illness, as they are where I'm living, us sufferer's have educated ourselves and have almost become our own healers.  We will be experts in our field one day!

If you would like to know what I feel is working for me after my twenty year search, please feel free to private message me as there are some things I can't post publicly.  There is a cure.

Hi Lau,

I had to stop working and a friend of mine also with cfs/me had to stop working. Mine was from a car accident and I received a fractured spine so, initially there was no question of going back. I also had ptsd symptoms (post traumatic stress disorder) I was utterly exhausted and was told this would take time. I had so much pain too and I kind of carried on in a daze. I was fit and well up to the crash and was reduced to, like many on here, a much reduced version of myself. I was self employed and at that point working in our local college, there is no sick pay when self employed and I was awarded employment and support allowance. I've not been able to work since. I loved my job. Like you, it gives independence but also a sense of self achievement. In regards my friend, she became ill with a virus and got post viral fatigue as a result. They were very ill and again never recovered. Their employer stated that they wouldn't let them back until fully recovered. In a way, that was a good thing as working part time would probably have finished them off..

Go to the CAB for help and advice regarding any financial help you may be entitled to as at least then you can maintain some independence. A change of career happens for many, one lady doing clothes alterations from home?

Hope that you can rest well and aid your recovery with your partners and employers support.

Best wishes

B

Hi lau188, So sorry about what you are going through.  My husband was forced to stop working in 1989 and had the same symptoms you are having, and was diagnosed with CFS and Fibromyalgia.  But he fought it for a couple of years before it caused him to become completely bedridden to where he couldn't even get out of bed and to the bathroom without falling down onto the floor!  Way back then, no one understood the illness and how serious it was, and they told you it was all in your head and that you just needed to keep pushing yourself and pushing yourself.  That was the worst advice anyone could have ever given, because pushing yourself like my husband did only made things MUCH WORSE!  Like I said, he continued pushing himself until he became completely and totally bedridden.  He also had a surgery to remove a cyst in his jaw less than a year later, and like you, it made him even sicker and weaker.  So please if you want to increase your chances of recovery, do not push yourself.  It's better to lose your independence for a while temporarily than it is to push yourself and still be unable to work 27 years later (like my husband).  He hasn't been able to work, socialize, or even barely leave the house at all for the last 27 years, and it has been an extremely depressing life for us.  You will increase your chances of recovery by just taking the time off to recover and hopefully get better.  Today, my husband is no longer completely bedridden (thankfully) but he is still very limited and can do very very little.  We had to apply for disability benefits for him, and that is the only way we've been able to survive.  For a long time, I couldn't work either because he was so sick and so weak that I couldn't leave him.  But he's finally improved enough for me to go ahead and work a part time job now.  So take it easy, and don't be too hard on yourself because I can almost guarantee, you will pay for it, and suffer much longer if you do.

Hi Lau, 

I've recently been diagnosed with m.e, I had glandular fever as well!

I work full time, 40hrs a week (now 36) some may say it's easier for me as I'm in admin and I don't need to run around too much.

I find it extremely overwhelming, I struggle to stay awake (occasionaly fallen asleep on my keyboard) very difficult to concentrate most days. 

Up until recently I had no social life whatsoever, I'd spend all weekend in bed catching up from the tiring week, wouldn't see any friends except the one I live with! 

I cope with work because I know I have too, If I didn't work then I wouldn't afford my rent, my bills, food! I also work for my dad, so he is very lenient with me, If I wake up late he's understanding, he lets me have a non disturbed nap on my lunch. I think if it wasn't him I was working for I would of packed it in a while back!

I'm on the up at the moment as I have started the gym, even though the day after I'm double as exhausted as I usually am but strangely enough I feel better In myself, healthier. 

I have also started a ME group, provided by the NHS. A 7 week course, based on the NICE guidelines.

I know how hard it is, and I feel for all of us suffering from this but we can get better and it is managable! 

 

Hi Lau

I'm 29 and have had cf s/me for over 15 years, there was a period in my teens where I was practically bed bound for about a year, I didn't leave the house had no schooling etc.

There are good periods and bad periods, I've managed to work full time now for about 6 years now ( and graduated uni despite some very heavy push back from my secondary school basically telling me to give up). Managing it gets easier, I'm struggling with a flare up at the moment and considering reducing my hours at work as my employer wants to send me to uni to get my qualification in HR. I'm going to do a 3 month trial trying to keep at full time, and then see where we go.

In good / moderate periods I make sure I have one day of the weekend where I don't leave the house just do household chores etc, I very rarely go out midweek, exercise helps me a lot. I do strength training when I can as this isl low impact training and helps build strength in my muscles for when my joints decide to give up.

I take regular breaks at work, although quite often I will take a short lunch break so I can leave a bit earlier and not travel in rush hour. On my bad days I always try and get up and dressed even if it's just to sit on the couch or try and push myself to get to work. Managing energy everyday is tiring, a struggle and can feel very unfair when you just want to be normal.

Big events, surgery, cold weather can bring on a flare for me - my dad and Grandma passed a year ago and this year, and the anniversary of last month is probably the worst I've felt for a long time. Be kind to yourself, we take longer than most to get back to full speed but you get there. It takes a while to get to know your energy levels and what you can manage.

Yes, I had to give up work and the most devastating part is that I would no longer have complete control over my money.  I grieved over it.  Eventually I got some government financial support so at least I have some of my own money.  I also made it clear to my husband I would be using his credit card, what was reasonable was up to $3000 monthly and I would not tolerate nickel and diming.  I use his funds for necessities like groceries, car repair , medicine and my own money for things like clothes and books.  You must stop trying to drag yourself to work.  You have done your best and you cannot do it anymore.  You need complete rest and freedom from stress to recover.