[Yismymindblank12]

I live with a rare neurological condition called "stiff person syndrome" or SPS.

It's affected my life since I was 15. It has robbed me from a lot of freedom over time. It's mad getting/keeping a job very difficult and I refuse to be on disability.
It's emotionally got me on the frits, because no my diagnosis I've received isn't necessarily fatal, but the underlying conditions that's causing my condition will.

I'm currently being looked at by the best neurologists in the country for my medical issues, I will be in clinical studies after my results come in.

I'm currently being checked if I have cancer, parkinson's disease, lupus, and MS.

The thing that has ate me up since having this. I've been taking this one day at a time.
The symptoms are very difficult to manage and live with. One day I'm fine the next minute I'm on the ground difficult to talk breathe or move. So no visible symptoms on tests at a hospital and I'm immediately ousted for being on drugs or psych a few years ago.

Living with this has been hell on my mental health. Many days I want to die so I can't feel pain anymore. Many days I wish I wasn't so different, and how difficult to live a normal life around the problems my disorder present.
I'm currently awaiting to find out if I'm going to have to worry about dying in 5 years or 20. It doesn't matter to me, I'll be very content if that's not the case, but I'll have to make compromise if I don't have long to live because it's progressively gotten worse.

I know I've seen a therapist for this, but I never had one who gave a crap about me or my issues.
I don't need medications, especially if I'm worried about conflicts to meds I may be put on soon if my tests come back both negative or positive on some other stuff.

It's that I need someone to talk to about coping the fact if it is really bad like they were worried about.

How can I cope knowing I will die slowly and painfully?

I fear death greatly and I fear this taking away my ability to speak my mind or live period.
How can anyone cope with that?

[Marylin]

I am so sorry Yismymindisblank,it sounds awful to be going through such a horrible condition and not know what the future holds.I recently went through a cancer scare myself and not knowing if I was going to die and knowing death from cancer is slow and painful,I had the great deal of fear over it and the shock of it too ,the fear is the worst thing and the not knowing if death will be soon or far into the future and also being alone with it all.I don't think anything is quite so hard as it is when we are facing it alone.
When we have others to listen ,understand and comfort us it becomes doable.even if it is still difficult but without support and reassurance it is almost impossible to bear.

I am sorry,I can only think to suggest if there is a support group for your condition within travel distance or ask a family member to help?
It is horrible to have a therapist that doesn't care,do you think it is better to find one who does care and stop giving your money to one who don't?

I only hope that somehow you find the right support for yourself ,it can be harder without that is sure.

[MickeyCheeky]

It must be horrible to feel like this.. I'm really sorry

[Yismymindblank12]

It's like I hate feeling my life is on borrowed time do i have to accept it. I don't have a choice and everything crashes on me again and it makes me question why was a born to suffer this much.

[Marylin]

It is horrible to feel powerless yismymindblank,as you must do over a situation such as this.If it was me I'd keep what control I do have by resolving to make the most of what I have now and can do now and I would hope I could keep as happy and as involved in life as possible until the end.It is hard I know but the choice is either that or be miserable now and throughout the worst of what will be.It is tough I know I hope you find support through this and people to love you too!