Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Today has been one of those days where I wish I could have slept through it. My jaw has been trying to spasm for about a week and today I woke up with it in a full-blown crazily painful spasm. I manage to deal with most of my other spasms fairly well, however due to the amount of pain my jaw causes I find these spasms very difficult and exhausting.

I always try to carry on with my day as normal when my jaw spasms as I do not like to give in to the pain, however today has felt like a real struggle. On top of this my body in general has acted up today, with my eyes being the worst resulting in several prolonged periods of functional blindness due to either my eyelids clamping shut or my eyes spasming upwards in their sockets. Despite this however, I still did all my workouts which I am very happy about!

I saw this quote earlier and it made me realise that on days when the pain is too much and I am exhausted, it is ok to get upset/cross or sleep through it because you don’t have to be strong 100% of the time, you just have to pick yourself up and brush yourself off afterwards.

Even though it is still several more weeks until I can have any more Botox treatment done to my jaw and neck, I am still going to let my consultant know so that he can book me in for my next lot of treatment. I am hoping that tomorrow my body gives me a little bit of a break, so that I can feel a bit more alive than I have felt today.

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Comments on: "Oromandibular Dystonia is Back" (6)

  1. I’m sorry for all you are going through with your Dystonia. My son is non verbal now and also is developmentally delayed so it is very hard for us to know when he is in pain and what is bothering him. Reading about what others are going through helps me to be a little more sensitive to my son. I hope your botox treatments will start helping soon!

  2. neeltje wilson said:

    Hope you will feel better soon so be strong, i’m sending ,you my best !

  3. Eileen Donahu said:

    My name is Eileen and I have cervical dystonia with a head tremor. My shoulders and arm and hands are affected. In addition I was told I have fibromyalgia. That in its self can be very painful. My is located several places
    I find the things you write are good for me to read. I do a lot of the types of coping skills you have. I hear or read the brain does a regeneration every 48 hrs. Kind of like a do- over. I believe its true because when I am sick its usually for 2 days. I know I will feel better on the third day. My spasms are distained in sometime and other times not. Well until next time I will free you from my droning on. Before I do I will let you know I have a relationship with the Lord Jesus and He has been my helper in time of need. Eileen

  4. A wonderful blog as usual xx hope today’s a better day for you xx

  5. Shelly Forster said:

    Hello, I am so grateful to have found your blog. I was diagnosed with oromandibular dystonia and tardive dyskinesia due to brain trauma. I had double brain surgery 5 years ago for removal of two tumors. I was 46 at the time. Went to get an MRI one afternoon to find the cause of my jaw and facial pain, and was in surgery the next morning. My life literally changed in one day. Now, I have not known a day without pain. This disease is hard to understand because so little is known about it. I was told by my Mayo Dr that my case is one in 30 million…..geez, with those odds, why couldn’t I have just won the lottery! I think I should have at least made it on Oprah:) I was wondering if you or anyone else who is following your blog has experienced the loss of family and friends because of your health issues. During the first two years, before my treatments took effect, I was not handling my intense pain and complete lifestyle change very well. I did and said some things (nothing vulgar or threatening) that wasn’t anything like the positive and selfless person they were used to being around. Anyway, it caused some of them to cut me out of their lives. They literally abandoned me during my darkest days. The emotional pain from that was almost as bad as the physical pain. My therapist told me that I should consider it a blessing in disguise, as the last thing I need to deal with is the constant walking on eggshells around individuals who refuse to accept me for who I am now. However, those who stand by me, cry with me, pray for me, support and encourage me…though they may be few in number….help to give me the strength to keep fighting. I don’t just want to live, I want to have a life!! Thank you for your insight, I will continue to follow you because I finally don’t feel so all alone.

    • Hi, Thank-you for your comment. Yes I have experienced that, the worst part was that my partner left me because of my illness (wed been together for 2years) which hurt alot, he was ashamed of me being in a wheelchair. However I realise now that all the people that have left me were not worth my time as they were not the people I thought they were. I am extremely grateful for the family and friends that have stayed by my side. xxx

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