Could it be worse?

[Enduronman]

Maybe, it could. I never imagined or expected it to be, but it got alot worse, suddenly. I've spent the last full year trying to figure out what to do next? I worked a very physical job for 30 years, then in 1 day, POOF! GAME OVER. My business, gone. My home, soon to be gone. My ability to make a living, gone. In fact, virtually everything I have is almost gone. What an interesting year. Dr, after Dr. Blood test, after blood test. Brain scans, X rays, and a long needle stuck in my a** every Monday. From being productive, successful, creative, strong, fit, healthy, to where I am now. Do you ever ask yourself, why me? Did you ever hear the answer? I have a new disease (so does my sister) that is very rare. I have heard that there may be around 1000 confirmed cases, in this entire world. Lucky me? It also comes with many potential threats and you never know when it will strike. When it does, it may choke me, dissolve my ears, take my sight, take my hearing, in a matter of weeks. I have a 70% chance of survival over the next 10 years, 54% after that...I am making the best of what time I am given. The clock seems to be ticking. Scary?

Imagine having to live with that haunting, tormenting threat daily?

It really can be much, much worse then where we are now.

Be thankful for what life has offered you friends and continue to correct the disorders/conditions that you may have..they're not yet diseases.

Have a great weekend, wherever you are!

[Lin]

Very sorry to hear that you have this rare disease and it has caused you to lose so much in life. I hope that they can find you some relief from the disease and you can start to live a life again and get back some things - even if not the same as before, perhaps some new things which will give you some life again.
Depression and anxiety may not be a disease and understand that depression and anxiety can come and go while a disease may never go away, but when in middle of depression and anxiety it is horrendous. It is possible to lose all parts of your normal life and ruin parts of your life forever.
Hope you can find some help, kindness and support from people on the forum who are suffering from a variety of different illnesses.

[Enduronman]

Thanks you for all that Lin. I knew 5 years ago that my Sister had this but we're not close so I really didn't pay much attention to it or investigate and research what it even was. She did show me one of the medications she was taking and also the side effects sheets attached to it. The first line said MAY CAUSE DEATH. That was quite shocking to me. Possible death, from a pill. Only in the movies, I thought. She recovered from it as it only hit her once for a brief time, and then disappeared. It focused primarily on the cartilage of her head. I wasn't so lucky. It got me everywhere. All of my joints sustained major damage throughout the whole attack period of about 7 months. The Dr. I had at that time was not knowledgable in this regard and probably caused more problems then he was worth. He's not feeling real comfortable right now, just like I didn't. LOL!

The MAIN problem that I have at the moment and its fairly consistent daily too. I feel better physically again, just like I did in early March. I thought I'd try to return to work for many obvious reasons. The issues began again as soreness everywhere, then extreme fatigue, then near the end of April I had severe pain and especially in the cervical spine to a point I couldnt turn my head, then episodes of ataxia for a total of 9 events. Ataxia is a very, very weird feeling. I had no physical control of my own body. It looked like I had cerebral palsy for 2 hour periods.

I stopped trying to work anymore on the 3rd of May, it began to ease and hasnt returned again either.

That's the problem. My mind is in a battle with the body. I want to try, yet I know what will quickly begin to happen to me physically. It will all be downhill, all over again, solving nothing, prooving nothing, and will just put me right back to where I was. Not in control.

I still struggle with this whole disabled theory, but I am.

E-Man.

[Lin]

You need to find something to replace work in your life. Is there s hobby or some volunteering you would enjoy for short period of times. That would give you some focus back in your life and make you feel better about yourself .