This has been on my mind all night and I can’t sleep
in a nut shell I have epilepsy, was diagnosed at 21, had to give up work for a year while I got to grips with the seizures that were never controlled dispite different treatments, medications etc.
I managed to go back to work after a year. 6 years later after having about 2 years of pain I was dignosed with fibromyalgia. The symptoms of this aggravated my epilepsy such as tiredness and pain and I ended up having up to 20 seizures a week, some grand mal and some small.
2 years ago I gave up work as my fibro was bad and I was still having up to 20 seizures a week and went on esa and pip. I was spending the time I was not working sleeping or crying in pain. I was not able to do things with my son and DH. DH was taking full responsibility for the house dispite working full time (he never complained). It just got to a point where I was either working, sleeping, recovering from seizures or in terrible pain. Work was becoming impossible and they were making moves to get rid of me on health grounds as I was having so much time off.
Now I am still having as many seizures and am in pain but I do manage to do some house work and get out and about with my husband and little boy. I feel removing work from the equation means I am less tired and not in as much pain. When I increase my levels of doing stuff the pain gets worse so I need to plan that if I am really busy one day the next day I am likely to be wiped out the next day or even a couple of days. I also seem to get more intense seizures with the pain and tiredness increase that take longer to recover from.
A friend came round today that I have known since high school and to tell you the truth if we met now we would not be friends as we have very little in common. She asked when I would be going back to work. I said at the moment I have no plans to but in the future maybe. She then said everyone judges me behind my back. My DH who overheard asked her who is judging me, when she did not name anyone he asked if she judged me. When she said yes DH asked her to leave.
As she left she said that I was the clever one at school and it should be me with the big house in a posh area instead of her and it’s a shame my son has to live on a half council estate. (Our area is about half council and half privately owned). My husband said she was a nasty bitch and i am worth a million of her. She was then out the door and my husband slammed it behind her. I will never talk to her again. Her husband is a friend of my DHs unfortunately but he said he is willing to let the friendship go if he has to same stupid opinions as his wife.
I am not worried those people I think of as friends are judging me. I don’t have any joint friends with her. My husband said my real friends will never judge but I just feel like I have had the wind taken out of me.