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My Story – Anonymous

This is my story.

My FMD was triggered by my past. I was sexually and physically abused in my childhood, from the age of 9 to 20 or so. (They are no longer a threat to me or anyone else.) The worse were the first abusers and then it got better but I was still abused till I knew it was wrong.

I thought it was a norm but it was not. I supressed these memories and they came to the forefront of my mind in July 2010 as I was going to university and working. I guess too much emotion and the gates opened to my past so I think that was what triggered it and so do the medical professionals that work with me. It was still going on when I was diagnosed with FMD but it was a very mild form of abuse and at the time I did not know it to be abuse, I now know better.

It started off with jerky movements in my arms and legs, they think I have had most of my life but it was so erratic that there was no pattern, and then it progressed rapidly to me literally throwing myself backwards, extension of the spinal cord, and I remember being sent home from work because of it. Then my walking became a problem and I put onto crutches because my legs would not work properly.

I got diagnosed by two specialists in the field and then I had to go to university a couple of days after.

I went to university but I could not continue as they could not deal with me in a wheelchair and scaring all of my peers with my back spasms. I woke up one morning when I was at university and I could not move my legs. Thankfully the university procured me one of their wheelchairs so I could still get to classes and eventually I got my own from the NHS.

It took me awhile to get my legs working again but with the help of the friends I have we managed to get them working again. But it was short lived as I have been in and out of a wheelchair ever since, the longest I have been in a wheelchair for is 18 or so months.

While at university I was diagnosed with sleep paralysis which they have linked to FMD. For those of you who does not know what that is, well for me anyway, it means I cannot move my entire body before and after sleep. After sleep it can be hours and it can send me back to sleep which is not a good thing. I have this every night and day, without fail. I can only move my eyelids.

But then it progressed to my arms and I can lose the use of my arms, as well as my legs, at any point of the day. I also have spasms in both arms and both legs and with my legs they shake my entire body most of the time. But, in my opinion, the spasms in my back are the worst because they make me have tachycardia for the duration of the spasm which can be hours. Tachycardia is where your heart beats more than 100 beats a minute and I get a light head because the ferocity of the spasms sends the air out of my lungs so I cannot get oxygen into my body. This has happened several times in pubic and it has scared everyone around me.

Up until recently I have had to be hospitalised when having a back spasm attack but my partner knows how to stop them and it is very effective but that is very recent. It scared him but he accepted it in his stride and now he has seen every aspect of my FMD, from not being able to move, to moving too much.

Thankfully I have not had the need to use the wheelchair in the last year or so but I do relapse. I have had several relapses over the last couple of months. I have fallen down and not been able to move my legs but I did not hurt myself as I know how to fall now, I have had a back spasm attack and I have had a couple of leg spasm attacks but I have been sitting or lying down when that happens. I still have sleep paralysis and it is my norm now.

Throughout this I have had my adopted daughter, my brother and my godfather looking after me and they have been with me right from the start. They are all very supportive of me and they know what to do when they see me in crisis.

But recently there has been my partner and people say they have seen a marked change in my symptoms, they have been getting better, but I think they are about to get worse as I am going through an emotional time at the moment.

At the beginning I was put on medication for FMD but because I am in the family way, so to speak, I can no longer take them. But life is good, very good for me.

Yes I have days where my FMD symptoms are worse, memory, bumping into things, spasms in my arms and legs but overall life is very good. I maybe only 22 and I have had a lot of bad put my way, I think it time that something good happen to me and I have been right.

I have met my partner, I am in the family way and we plan on getting married late next year.

I do not think I will totally be over what happened in my past but I know they cannot hurt me or others and that is good enough for me. Maybe someday I will get complete closure on why they subjected me to hideous things but for now I can content in the knowledge that they can hurt no one else in the same way as they did me.

No one should go through what I went through, no one should have to live with this disorder but we do and we get on with our lives.

We make the best out of what we were given.

I cannot work at the moment, I have been signed off for several years now but hopefully someday I will be fit enough to work but in the meantime I keep myself busy by writing fiction. I hope someday to make a living from this.

There is always a light at the end of the tunnel, it may get fainter and fainter and then brighter and brighter and fainter again but it is always there and someday it will engulf me in its light and then I will have peace with myself and what those people did to me.

It is my hope that, if there is no cure to be found, that we all find peace within ourselves, we are the best we can be and that the world knows about this disorder.

It is time we have a voice.

This is my story.
Thank you for taking the time to read this.

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