Your post reflects exactly what my life was like for two years before I gave up work. I worked 36 hours a week spread over 5 days. I had no life outside of work as every evening when I came in I walked my dogs and then collapsed. Every day off during the week was spent in bed sleeping, every Sunday was exactly the same. I slept 12 hours every night. No house work, no tv, no seeing friends or family. If I did any of those things I wouldn't be able to get to work. I still ended up taking quite a bit of time off work.

I could have coped if my employers had been more accepting of my illness, for 8 months I had no diagnosis. All they could see was I had one eye shut. They didn't realise thee affected every fibre of every muscle of my body. They wanted me to be on my feet all day everyday. I asked to change job roles 3 times as there were less physically demanding job roles in the company, I was denied this. They didn't understand that I did nothing outside work just so I could be there. My job was everything to me and part of my identity. Basically they bullied me out.

In June 2008 I collapsed, I mean really collapsed I couldn't walk, I couldn't stand and an elephant had parked itself on my chest. I was frantic with worry about my job. I knew that I couldn't continue, but I also worried about the financial implications. I had always earned more than my husband. Luckily we are ok, but there may come a time when we aren't. But I refuse to worry about the future, things will work themselves out. At the moment staying alive, getting a diagnosis and getting some decent treatment are my main concerns at present.

Its a tragic situation to be in, im 35 I loved my work. But my body told me that I had to stop, I was killing myself. Its not easy, but was made easier by the fact my neurologist told me (when I had the diagnosis of MG) that I would never work again and to get all thoughts of working out of my head.

It has taken me a long time to accept that I can't work. Its tough waking at 730am every day wondering what I will be able to do to fill the time in before going to bed. Im pretty much house bound. If it wasn't for the internet and text messages I would probably have no contact with the outside world. I have made wonderful friends from all walks of life on the internet and I now have time to appreciate my husband (we never saw each other when I worked we spent one day a week together), I have time to spend with my family, I can catch up with "real" friends (people that understand you are ill and make allowances for that). And I have you guys, who are all so very important to me and share this journey.

Giving up work has probably saved my life. Its tough, but living, even like this, is better.

Love
Rach