One of my most painful and prominent disabilities.
Dystonia is a neurological movement disorder that is painful and causes muscles to spasm or not work as they should due to the brain not sending the correct signals to the body...and it sucks.
I have had problems with my muscles for a number of years now, but the past 30 months have been the worst. I have been getting muscle spasms which can last for hours at a time. My body seizes up in the most uncomfortable positions I could think of. If anyone reading has dystonia I really feel for you. Its taken me a while to get on some tablets that actually help a bit. Methocarbamol has been helpful in making the spasms not so intense. My legs used to kick out, arms flailed around. They still do this but not as bad as before. It started getting worse after my breakdown. I started noticing my hands would seize up and arms would twitch. I was trying to learn to walk again but my legs would just give way and not let me put any pressure on them. This is when I became a fulltime wheelchair user. I was using a wheelchair before, but mainly just when I knew I would be out for a longer time than normal. Most of the time I would try to just use my crutches and then rest afterwards. The Dystonia ruined that. I couldn't even self propel anymore and was having to be pushed by someone else all the time. Eventually I got my powerchair, which has been a game changer in feeling a little more independent. Even if my hands seize up I can still manage to drive my chair.
The part of the dystonia that I really can't handle is the locking of my jaw muscles and the locking of the muscles in my ankles and feet. When it flares up my teeth can be clenched all night long whilst I'm trying to sleep, then I get up in the morning with more of my molar broken off as my teeth are just grinding non stop. This has caused a lot of problems with my teeth, I was diagnosed with TMJ-D and I have chronic daily headaches due to the pressure. My feet are also painful. I cannot turn my feet outwards and most of the time they are seized up so they are both turned inwards. As though my feet face each-other if I stand with my crutches. Trying to move with feet like this is agonising to my hips and knees. I also have certain muscles in my neck that will seize up and spasm, which causes me to look like I am constantly looking to the left of me.
My speech can also go, I either wake up unable to talk properly or it will deteriorate through the day when I have a flare up.
Despite all the pain I get from Dystonia and the hassle it causes my children are amazing with me. If my speech has gone and I am trying to ask them something, it becomes a guessing game which cheers me up. (My 9 year old wins most of the time because she knows how I think and I think she is picking up on my version of sign language). Keeley (9year old) will also try to massage the muscles in my hands when my hands seize up and ask me if I need anything or any help. She is beyond amazing with me. She has never seen me without my disabilities and illnesses. Although she wrote a letter to Santa asking him to make me better so I can go play in the park with her which broke my heart. I have to remind her that I am still her mum and we still have our good days where I can do more than on a bad day.
This is me and my 9 year old. I was having a rough pain day, but this reminds me that as long as I have my kids (and my partner to lift me out of swings :D ) I can still be a mum to them and do my best for them.
Disabledmummylife
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