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

When you wake up in the morning, what do you? Do you mentally wrestle with yourself to throw back your warm duvet cover, swing your legs out into the unwelcoming cold, stand up and start your day? This is a simple task. One you do every day without thinking about it.

For me, simple is not an applicable word for this every day task. Most days my mother wakes me up to give me my first cocktail of medications for the day. I stay in bed, at the moment for breakfast, as venturing outside of the safety of my mattress is a dangerous move to make. When I eventually have to get out of bed, it involves me calling for my mum to help. Once I have managed to get to the edge of the bed, my mum takes one arm and my step-dad or sibling will take the other.  They support me/attempt to prevent me from falling as I try to walk.

At the moment when my right foot is forced to try and work normally, it fights back hard. Often winning. My toes curl them-selves under, my foot flips over so that the top of it scraps painfully along the floor. And then to put the icing on the cake, it will twist in unnatural painful positions, as it protests violently against my will.

For me, at the present time, getting up and moving is an exhausting task. One that fills me with dread every time I need the loo, or have to move to a different room. Each time I attempt to move around, I try to clear my mind from panic. I tell myself over and over again, that this time  it might just be different, I might manage to walk a few steps, like I was doing before Christmas. I fill my head with positive thoughts. However when my foot then starts to contort, it is physically and emotionally draining.

I wish the doctors could see me like this. See me at home, when I am out of my wheelchair. Where a small glitch in my brain makes me vulnerable in my own environment. Where I struggle to walk one step, where my family catches me when I collapse, where my family protect me from my surroundings when the pain causes me to have a Seizure. Where they could see that I need help now and not in a years time!

However I must remain positive, I must focus on the fact that before Christmas, I was slowly making progress, and learning to walk again. The fact I started to walk, reassure’s me that I will again. Until then I just have to suck it up and deal with it. I must be pro-active. So I shall blog , I shall write letters, and I shall make the doctors and the politicians listen. I shall make them understand just how life changing and debilitating Dystonia is and I shall make them take action! I shall not remain silent!

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Comments on: "The Battle against my Foot, the Doctors and my Brain." (5)

  1. Louise Chamberlain said:

    Good for you Rebecca! I really feel for you and your family. I must admit I hadn’t heard of Dystonia before you started to write about it, and it sounds truly horrendous. I can’t believe that there is nothing they can do for you that would make your day to day life more bearable and painless, it just doesn’t seem fair. Take care and stay positive :o) xxx

  2. hannah lefore said:

    have to say youve done a really good job on this blog-well done! from hollys cousin

  3. I love this post Rebecca, you paint a colorful and understandable picture of Dystonia. This is just what the world needs to find empathy and compassion, a decidedly human description of our condition. It’s also a much better way for us to see ourselves. I admire your courage, tenacity and spirit, you are an amazing person! -Pamela-

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