Rosie and I have spoken a lot over the last few weeks about depression and anxiety. I decided today to take a side step into the condition I suffer with and explain what it is all about.
I suffer from something called Functional Movement Disorder. This means there is abnormal movement or positioning of part of the body due to my nervous system not working properly. It is not due to an already existing neurological disease (according to that multi-coloured search engine).
My symptoms are mainly brought on when I am in a stressful situation, extremely tired or sick with a temperature. They can range from a signal being sent from my brain to my leg to move then my leg not following through, so I must drag it when I walk to my body going into a shaking episode. The shaking can be interesting as it can affect my legs, arms, back, torso and sometimes even my head. The shaking can last anywhere from a few minutes to an hour to a day or so (that last one is rare thankfully).
What it feels like
It feels like running 100 miles without any breaks. A great way to burn calories I must admit but a right pain in the arse if it affects my whole body. All you can do is let the episode ride as there is no way (and no medications) to stop it.
I was diagnosed about 7 years ago. However, it was a tricky diagnosis. All of the brain scans, tests and various other bits and pieces showed nothing actually wrong with the body. I had spent months between the GP, A&E, hospital and physios but was getting nowhere. Every time I approached A&E they were convinced I was on something, had taken something bad or was withdrawing for something. It wasn’t until the blood tests came back clear that I started to be believed. It was not a great experience and didn’t help the already high stress levels.
Someone thought outside of the box
After the fourth trip to A&E where I found myself admitted to hospital I had a lady come round to chat to me. You could see the gogs working in her brain as she tried to figure out what was going on. All I remember her saying was, “I think I know what this is, I am going to go and get my colleague”. A few hours later I had two neurologists by my bed looking at me. And then came the diagnosis. Functional Movement Disorder. I was incredibly lucky to have had someone who thought outside the box and had come up with a conclusion.
Now as well as Functional Movement Disorder I also suffer with dissociation behaviour. This means that I can go through a stressful situation, de-brief at the end of it but then a few weeks, months and years struggle to remember the nitty gritty of the situation. In some ways it is a good thing to have but, in some ways, it can be a bad thing as well. It’s good as I forget about the situation but bad as my brain can file said situation in the depths of my brain and it isn’t until I go through something similar that it re-appears. Due to the Functional Movement Disorder it usually appears with shaking.
Working with a counsellor
I have worked with a counsellor to build in some coping techniques and I like to refer to them as my deck of cards. The deck of cards lives in my back pocket and are with me all the time. I determine what card I may need for a specific situation but to be honest these days they just sit in my pocket collecting dust. As a qualified personal trainer, I also use exercise to manage and control my symptoms. With the deck of cards and exercise this means I can go days, weeks and months without any major functional movement attacks.
As part of the functional movement disorder I also have a lot of ticks and twitches which live with me day in and day out. These mainly affect my eyes, my mouth and legs. Rosie refers to my legs moving as my happy feet. I have had the ticks and twitches for so long I barely notice them these days. I try not to let these bother me and again with a daily routine, exercise, good food and good sleep I can keep everything under control.
It had to come up sooner or later didn’t it?! I mean think about it, what if I was to stand next to you at the bus stop twitching and moving in a weird way. What would you do? What would you think? If the answer is to carry on with whatever you were reading on your phone, then that is a great move and well done. If you think what is wrong with her then that is fine too, we are only human after all and in most instances interested in the world around us.
The bus stop
I unfortunately had a bad experience of someone physically moving away from me tutting. All I was trying to do was board a bus with a shaky body. I ignored it the best I could as I knew what was happening but I felt sorry for the person who was involved. I put it down to the fact they didn’t know me and never have.
Ask me any questions you feel you need to. It’s as simple as that.