ME/CFS, work and baby - is it possible/realistic?

[lulict]

Hi, new poster and I'm just hoping to hear other people's experiences.

I've had ME for 2 years 4 months. I was off work for almost one year when I first became ill. I'm a solicitor. I went back and built up to full time over a few months and coped with it for another year. I have just left however as FT work was too much for me. I was offered a part time job, which was then withdrawn when they found out about the ME - whole other topic and I am taking legal advice! I am looking for another PT job now.

While I was working FT and ME was manageable, DH and I planned to start to TTC this month. This has been put on hold for the time being, as the stress of everything has caused my ME to get worse again. I am terribly broody though and despite previously being a card carrying career girl, since having the ME my priorities have totally changed.

I had thought that even with the ME I would be able to work PT and have a baby. I'm now thinking this might not be the case and I might have to give up work completely. Financially this would be a struggle but we'd cope. We have lived off one income before as I was obviously too sick to work initally.

Sorry for long rambling post. As I said, I would like to hear other experiences and would be grateful for any advice/words of wisdom.

Thanks

Hi lulict. I have M.E./CFS and my DS is 21 months. I have had it for about 7 years. Was working full time for a mortgage company when I got it. Carried on as long as I could full time, then went part time, had to reduce hours again and eventually was signed off sick and I left after 9 months signed off as I knew I wasn't going to be going back any time soon. My DH was wary about having children with my energy levels being so rubbish etc but I said that there was no point waiting as it may never go. It actually took us over 3 years and we found out I had endometriosis and I had to have surgery for that. We were told IVF was our only option but I found out I was pregnant 3 weeks before we were due to start IVF! Yay.

Anyway, before I got pregnant, my M.E. got easier and I went back to college and trained as a teaching assitant and was working in a school for a few hours a week. However it became apparent that this was making me worse again, I am on In Cap (can you not get this?) and was doing permitted work for a year. When the year was up I had to give up the benefit or return to work. Luckily the decision was taken out of my hands and my DS was due around the time I would have to make that choice (it would have been to give up work again, I knew it was making me worse again).

My focus is on my son and I know I would not be able to work and look after him. We can only afford this as I get In Cap, we wouldn't be able to manage just on my DH's wages. I have a strict routine that we stick to and I still sleep when he does in the day which works well.

My personal experience means that I know I cannot work and look after a child. I have always wanted children and because of the M.E. I won't be having as many as I would like but I refused to not have any because of it and it is working well. As long as I don't over do it, it is ok and I go to friends houses a lot which means I get out and DS has people to play with and more space to run around (we have a very small house).

I have had a positive experience of having a child with M.E. as I was going mad at home all day on my own but this has given my life structure and I have never been happier! HTH. Sorry its soooo long.

Thanks Itchy, the more information the better. I do know that what energy I do have I would rather invest in my child than struggling trying to work and raise a family. The drop in income scares me though! I am currently receiving JSA as I can work PT at the mo but if/when a baby comes along, I don't think it will be possible.

Congratulations and well done to you for managing so well.

Hi Ive had ME since at least 1993, when I was at University studying full time with a young baby and a single mum. At the time I felt I couldn't carry on at Uni, and left.. took a break for a year, as I was told I would be better after a year, and then tried several jobs.

Working for others I found difficult, if I* was going through a 'bad patch' keeping to the strick nine to five, but I soon elarnt to pace myself. Over the eyars I have had periods of working and periods without depending on how my ME was at the time. Therefore found doing temp work was better suited for me.

I have since had three children, (sadly one was too precious for this world), and am now self employed, so I can work my own hours, and am back at Uni finishing my degree. My son who was a baby at the time when I was informed of having ME is now 13, healthy and doing 3 GCSE's early at school. My Daughter is dyslexic and has a few mild special needs but that is not due to me having ME.

Both Kids help around the house, and know when to tell me to rest and when I need to keep going for my own sake.

So yes, as long as you pace yourself having a family working with ME is possible and very rewarding in my view.

I would like to add you can get DLA for having ME which will help your income, also could try for Incapacity Benefit ...

Thank you for sharing your experience with me Manenu, it sounds like you are doing a great job of raising your children.