I suffer many movement disorders, but no matter what I keep going, I will not let them win! Though it’s not really a choice!

Hello, I have not posted for a long time, so thought I would post an update. Well, I’m Andrea, I set this website up to help others like myself, and so you know you are not alone.

I suffer from ‘Dystonia’ which is a movement disorder giving ‘spasms’, which I have ‘Botox injections’ for. I get five injections around my eye for my ‘Blepharospasm’, then one in my eyelid right on the outer edge, two for my check one near my nose the other at the side of my cheek, and then a large dose for my neck injected in my splenis muscle for my ‘cervical dystonia’.

I also suffer from ‘Functional movement disorder’, which has given me weakness on all of my left side, in my leg, back, neck, arm, hand, and it gives me spasms in all areas, not all the time but enough. I also get ‘Non epileptic attacks’, which came with my Functional problems too.

Then on top of all this, I have a lot of back pain which is from it being full of ‘Arthritis’, along with having ‘Degenerative Disc Disease’ which sadly runs in my family, and with one of my daughters already starting with it in her twenties. It leaves us suffering from ‘chronic pain syndrome’ which our bodies have to continually fight against, then leaving us with ‘chronic fatigue syndrome’. Not one day is easy.

Then I started suffering a few years ago, with really bad pains in my shoulders and knees, which again is from ‘arthritis’, for which I get pain relief steroid injections. I also take a multitude of medications, for all my problems, to help me get through the day.

My ‘functional movement disorder’ was put down to my brain having a disfunction in the wiring, following having massive stress at work from my boss, and problems in my home life, with my now ex husband.

I’ve been having trouble since 2010 from dystonia, but my functional problems started in 2012. Then my arthritis problems started approximately five years ago, around 2016. Needless to say, I am now disabled having to use a wheelchair or mobility scooter to get out and about, and have to use walking sticks in the house. I have to say that becoming disabled, has been the biggest heartache of my life!

Some people only have a few problems, while others have more. However many it doesn’t matter, we all suffer in our own ways. That’s why we need to be here for each other.

Take care x

The Covid Injection

At the end of February, I went to have my first injection to protect against the Covid virus. It really knocked me out, I had a slight headache and I slept for about three days. Weirdly this week I lost all energy again, and have slept most of the week. I have had utterly no energy, and I really have slept all day and all night. I actually think I have become the real Sleeping Beauty, though it didn’t take a kiss to wake me back up, the pains in my back and the rest of my body did that, but hey I live with it.

I just wanted to let people know, not only from my experience but from friends and family experiences too. That you may get redness on your arm where you were injected. You may get a headache, you may feel achy in your joints, you may just feel run down, take some paracetamol, and rest.  If you have no energy and just want to sleep, that is okay, you will be fine afterward. So do not go kicking yourself thinking it’s bad, in fact, sleep is very good for the body so it can regenerate, but rest is always good. Whatever you feel, it does pass and then you will be fine, in fact, one of our Aunts had nothing happen to her at all, she was one of the lucky ones.

Always be kind to your body, you only get the one and it has to last. Take care folks, and catch up later x

The Way It Feels…

 

Have you ever laid in the dark wide awake? With the pain in your body making your brain feel alive? Or is it the aliveness of the brain, making the body feel pain?

Each pain makes a spark as they flash from axon to neuron pulsating in your brain, making your mind alive with thoughts! The electrical impulses pushing and transmitting information to other, different neurons. Transmitting flashes of information to the body’s muscles and glands. This causing the body to have spasms and involuntary movements, causing pain and discomfort. The central nervous system takes all the information up and down the body, some information gets out of sync and things function differently now.

Laying really still, I can feel the muscles fiscillate in my legs like the movements of a fish swimming. It is a very weird feeling, and watching the muscles move like that all on their own stretching and pulling and twisting away is so weird. At times it makes me feel queasy, I have to turn away and not look, I have a pain in my head, it is always there lingering ready to get worse , or when it wishes it retreats.Never far away it stays in the dark, along with my darkest thoughts which I wish to remain away too. I try to think of other things, move myself out of my body and away from the pain.

 

 

 

It is called ‘Dissociation’, removing yourself from a situation, a place in time where you don’t want to be. It is like running away into your own mind, where it is safe from harm. Harmful visions, harmful words, away from harmful people or situations.

The brain is indeed a wonderful thing, it still holds secrets of how it fully works. How it can shut down to help a person regain full health, as in a coma. Though it can also file things away when it feels you cannot go through the suffering you may have at a point in time. Only to bring back and open that file, throwing the memories around, leaving them strewn on the floor of your mind.

Left to try and pick up the pieces, like a puzzle we put back together. What if we put them back in the wrong order? What happens then? We are left it would seem, in more of a mess than if we had dealt with these pieces at the time we were given them. Now left with a misfiring brain, and the damaged puzzle pieces that are the memories of our past. Where the hurt still remains seemingly worse, as we struggle to function properly anymore. This is only a small insight into the mind and daily life, of a Functional Movement Disorder sufferer.

This is the answer to, the way it feels…..

 

The Pain Of Loneliness


Does anyone ever feel lonely?

Does anyone ever feel confusion?

Does anyone ever have memory loss?

Does anyone else feel so raw inside, they feel there will never ever heal again?

Does anyone ever feel that they are on their own, and there’s just no one there to help them?

I live with my partner, and two young children. We don’t have a big family, and we don’t have any friends near. 

For me life is very lonely, I only really meet people by chance, and only for short chats. When I take or collect the kids from school, but it is awkward as I have to use a mobility scooter and people seem to stay away because of it. Because they don’t know what disorder I have, and no one cares to ask. 

I went to hospital last week, to see my spinal Neurosurgeon. There whilst waiting I met such a nice couple, two middle aged men, one was ill the other his Carer and partner. The Carer spoke to me starting the conversation, by using my mobility scooter to talk about getting about. 

His partner has rapid deteriorating MS, we were talking about memory loss which I have a lot now usually short term. The guy I was speaking with said here, listen. He then asked his partner who was the prime minister? He thought then answered David Cameron. When asked what year was it, he took longer to think then said 2015. Both times he was very positive with his answer. Sadly he is behind by two years, my Functional Movement Disorder has overlapping symptoms of other movement disorders, and it does frighten me that one day I may need full time care like this lovely man. He is very lucky to have such a caring and loving partner. It doesn’t phase him because he loves him.  This man was lonely too, he has a full time job caring for his partner which gives no time for him to do anything else.

The feeling of loneliness and not talking to people, leaves you feeling hollow.

Then again whilst waiting a woman spoke to me. She said “oh I could have done with one of those to get here, we went here there and everywhere to find the place”. That was the total conversation, and only about my mobility scooter which I find annoying. My mobility scooter isn’t to make my life easy, it is my legs when I got out, same as my wheelchair is! I just smiled at her, saying yes it’s a large place. She then turned back to her friend. If anything, this short chat then turning away, makes me feel more on my own, more lonely because I was on my own.

It doesn’t matter what I do, I always feel lonely. Whether I try to lose myself in painting, my uni work, or just try to watch a film. There always seems something that makes the loneliness come back.

I am so lonely 😟

Thanks as always for reading, and take care of you x

Do you have neck pain? Could it possibly be Lymes Disease? 


Picture credit to Dreamstime.com 

There are a great many symptoms shared by both Functional Movement Disorder and Lymes Disease which can easily be overlooked.
In this research, it tells of how it can effect the spine along with other areas.

Many aspects of Lyme disease are still not fully understood, including how exactly it causes neck pain and stiffness. However, it is thought that the primary bacteria of Lyme disease in the United States, Borrelia burgdorferi, can get into tendons, ligaments, muscles, intervertebral discs, blood vessels, and/or the linings of nerves—including in the neck—causing inflammation, pain, and muscle spasms.A great site, and a must read if you are unsure about your disorder. 

Quote from – https://www.spine-health.com/conditions/neck-pain/neck-pain-lyme-disease?source=3tab&utm_medium=web&utm_source=sites&utm_campaign=3tab


Above picture credit to Google. This shows the actual sizes of the tick which can give us Lymes Disease. Amazing a thing so small, can do so much damage.

Once bitten by a tick (mostly these ticks are found in certain areas of America, but are now found her in the UK. Mostly I believe in Scotland, as there are many deer live there. Though they can be passed on from deer, but also dogs and other animals. Once bitten itcan take a few days, but you will see like a bulls eye shape appear on the skin in red, as this moves outwards from the bite. Not everyone notices the mark, especially if it is on their back. Below is a picture of how these bulls eye rash marks look on the skin.

Picture credit to Google
If you see a Bulls Eye Rash appear like any of these, you really do need to be seen by a Doctor immediately, to try and stop the problems you can get from Lymes.

I believe that the more information we learn about our disorder/s, then the better informed we can be when Drs ask us questions. As sadly Functional Movement Disorder really is not very well known about in the medical community, and definitely not in the whole world really. 
The more we can learn and pass along, the better! 😊👍
So here is the link to a great spinal site, about possible neck pain from Lymes Disease!
https://www.spine-health.com/conditions/neck-pain/neck-pain-lyme-disease?source=3tab&utm_medium=web&utm_source=sites&utm_campaign=3tab

It may help one person, or hopefully many 👍

Thanks as always for reading folks 😊

Moving Your Twisted Body Through Dance

There are many of us who go through each day, struggling with the jiggling movements of our necks. The twisting contorted movements, or the quick swinging round of the head from the neck muscles spasming and moving wrong due to the Movement Disorder called Dystonia  . These neck movements of Dystonia are actually named ‘Cervical Dystonia‘. Dystonia can also effect many other parts of the body as well, with Cervical Dystonia making the natural freedom of movement restricted, and can make your body even walk wrong with problems as the neck is part of the mane column that holds the body up.
There are other neck movements called Spasmodic Torticollis, again a symptom of Dystonia. Spasmodic Torticollis, also known as a crick in the neck, wry neck or loxia, is a dystonic condition defined by an abnormal, asymmetrical head or neck position, which may be due to a variety of causes. The term torticollis is derived from the Latin words tortus for twisted and collum for neck. The most common case has no obvious cause, and the pain and difficulty with turning the head usually goes away after a few days, even without treatment.

 

I suffer from this Cervical Dystonia myself, and I am lucky enough to get Botox injections for my neck. Along with injections for my eye spasms called Blepharospasm, and injections in my cheek as my face also spasms which is called Hemifacial Spasm.
I found a video on YouTube which I think would be very valuable to others who have these conditions, and to give hope that you can help yourself, either on your own or alongside the other treatments you have.
https://youtu.be/DwkHK3rfKO0

 

In this YouTube video, you will see how Federico Bitti, rewired his brain through movement and dance and Neuroplasticity Movement Therapy.
I’m sure we can all find five minutes a day, just for ourselves to have one little dance to a song on the radio, or pop your favourite pop song on, or classical tune to sway to, then step it up little by little.
I have back problems, but I can dance with my arms and the truck of my body, and of course my neck. So there is no excuse to not give it a go, so go on give it go. What have we got to lose? Nothing. We can only gain from movement, and rewiring our own brains go for it!

 

Unfortunately as most of us know, people can also get Functional Dystonia. So any one who has the Functional Dystonia, come and join in too. We are all in this together, let’s makes ourselves better if we can, we have nothing to lose 😊
Thanks for reading folks, enjoy your days

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