So you think you may have a movement disorder?
I’ve been thinking about the best way to tell you about what it’s like to have a Functional Movement Disorder – as discussed in last Friday’s post.
In truth, just writing about what my physical self and I go through hasn’t been easy. So I’ve decided to approach this from a more practical standpoint.
I’m going to publish a series of posts that follow the progression of my illness, so that you get an idea of what happened/happens. Within that, will be anecdotes about my experience, the different symptoms that arose and some pointers about what was done in response to what happened.
Hopefully, this format will be more helpful to anyone who is going through similar – or knows of someone who is. And I will share our learning so that you don’t have to reinvent the wheel – which hopefully means that you can get to support services more promptly to help you manage your illness.
This week, I’ll be focusing on what to do when your symptoms first manifest.
What are Functional Movement Disorders?
So, your body’s acting funny and you have no idea what is going on or why you suddenly can’t do the things that you could before. What are you gonna do about it? Here are a few thoughts to get you started.
Admit that what is happening to you IS out of the ordinary
I know what you’re going through doesn’t make any sense – that’s why it’s a problem.
I just kept telling myself “I’m just tired is all” and looked forward to getting time off work. If your symptoms are stopping you from doing things that you normally do, it’s time to look at the why.
Start keeping a Sickness Diary
Most of my employment history has involved working with children and adults with “complex needs” and “challenging behaviours”; requiring support services to be put into place. In order to argue for said services, the thing that has been required of me in every case is to provide evidence. I simply applied the same rule of thumb to my ill-health.
I started by writing the information down, but when the spasms became a constant element, I recorded the information onto a dictaphone because it was faster and easier to do.
Write down what happens to your body – both internally and externally – and be detailed in the information that you gather.
- Record dates and times.
- Can you tell when your body is going to go wrong before it does?
This can help to determine any patterns to your illness and help you manage it better.
- Describe what happens to your body. Are there different types of symptoms?
- Record the duration of the different symptoms.
- Get the people who spend the most time with you or who have seen your symptoms to record their impressions too.
This can be useful as they see you from an entirely different angle and may pick up on things that you’re not even aware of.
Video as many of your symptoms as you can
Videoing can easily be done using mobile phones – which most people have and tend to carry on their person regularly enough to catch things whenever they happen.
This is particularly useful for showing medical professionals what your body does if you don’t happen to be manifesting symptoms at the time of your appointment.
If nothing else, it’s a pleasure watching the expressions on the faces of medical professionals when they see for themselves exactly what you’re going through.
I’d been with my GP since the age of 15; but those intervening 22 years counted for nothing when I got sick. His response when I first reported my symptoms was: “That can’t be right?”. No shit, Sherlock? That’s why I’ve come to see you!
He didn’t believe me until I ended up collapsed and spasming on his office floor (Serves him right!): and then all he did was panic and call an ambulance. But as the illness progressed, I was able to show him the videos and use them for arguing for referral to particular services.
That’s it for this week, Ladies and Gentlemen. I hope this goes some way to starting the discussion. Please get in touch if you feel there are particular areas that I should cover in this series and I’ll do my best to incorporate them.
In the meantime, take good care of yourself and remember: Fuckerty happens! But you don’t always have to bear it on your own. Let’s see if our shared discussions can aid us to better physical and/or mental health.
AKA Crip McWog™
This series in running order
- The Stink of Chronic Illness
- Functional Movement Disorder :: #1 – What Is It?: which focuses on what to do when your symptoms first manifest.
- Functional Movement Disorder :: #2 – Exploring the Symptoms: which focuses on symptoms of weakness & paralysis, tremor & spasm, contractures and gait problems.
- Functional Movement Disorder :: #2.1 – Exploring the Symptoms: which focuses on symptoms of pain, facial spasm and speech problems.
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AUTHOR: I am might war. I have a love of music, the written word, travel, Anime, polar bears, people and “sticking and colouring”.