'A Patient Voice' Community

I have Multiple Sclerosis, Restless Leg, Sleep Apnea and Pain from any and all of the above and my family tells me they know plenty of people that still work with MS. Isn't that reassuring. I'm 57-58 but they don't take that into account that the people they know only have MS and are only 20-30 and they have a bad case of YDU because they have much more education than I do and therefore think they know that all my "pain" is in my head. I worked most of my life doing physical work and have had several accidents over the years to add to the problems with my back. My Mother and Ex-husband also thouht that beating me was the way to get my attention instead of calling my name so my head, neck and body were pretty fouled up by the time I left the Ex at 36. They have never had any form of mistreatment from anyone anytime during their lives but they are authorities on what I should or should not be able to do no matter what the doctors say. My sister said it would take two years for me to get my disability from Social Security and I quit work in June and received my first check in January for December of the same year I quit work. The doctor told me I should of quit five years earlier.

Now I have trouble walking, sleeping, staying awake, riding in a vehicle, shopping, and have both bowel and uriinary incontinance, plus memory lose and cognitive difficulties. I get facet shots every three months, take $42,000 worth of medicine a year but my sister tells me I should be working not sitting at home. Go figure. She's a pharmacist and she knows more than the doctors, all six of them, that I see. I try and do the best I can every day so therefore I am branded for the days I can't do anything as a put on.

Hang with the ones that love and understand you. Be it friends or family. If the family comes around eventually good but in the meantime don't make yourself miserable waiting on them. Create your own "family of friends" that understand your situation and will help you to live confortable with it as much as possible and find a support group or create your own from people you know love you. If need be see a mental health counselor to help you cope. It has been my salvation.

And last but not least get a handful of the pamplets "But You Look So Good" and share them. They are very enlightening. May ALL of you find the support you need.