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

Twisting Limbs

On Sunday afternoon my ‘good leg’ spasmed for the first time. I choose to simply ignore this, as I was having lots of spasms and seizures as it was. Other than having the odd spasms in a toe or two yesterday, my leg and foot were fine, and I choose to completely forget about it, as I felt there was no use in getting wound up over something that may or may not cause an issue.

However I woke up this morning to the bottom half of my leg and my foot in spasm. I breathed through the spasm and tried to think of calming thoughts. Once it relaxed I once again pushed it to the back of my mind and tried to go back to sleep. However any chance of having a peaceful day was destroyed when I woke up. My step-dad had been accidentally locked himself out, so I got up to let him in. What would normally be a couple of quick hops on the crutches to the front door, took a painful minute or two. My left leg was spasming badly and I struggled to balance myself and avoid setting off a spasms in right leg.

A similar situation arose later in the day when I got up to go to the other room. I really struggled to move at all. Which sparked a great deal of panic in me. I rung my GP and left a message asking for him to call me back, I knew that he would not be able to offer much advice, however the question he asked in response to my statement about my leg was “are you able to eat?”. I now have an appointment to see him tomorrow morning, I hold little hope for this though due to his earlier comment, after all since when have I used my leg to eat?

I am trying to stay calm and have mediated several times already today, however I have not been able to relax. Part of me is worrying about how I will be able to mount when I go riding on Thursday (I am going to go no matter what and plan on medicating myself to the max) and another part of me is having a break down over the impact that this is going to have.

I have tried standing in different positions over the day and if I stand on the side of my foot then this works to a point. It enables me to hobble around a little bit but I have no idea what else do. My whole body is now completely out of my control and I cannot stand it. I do my best to try to stay positive every day and fight against the spasms, but I am beginning to feel like I have fought one battle too many and they feel like they are never-ending.

However despite all my pessimistic thoughts I refuse to give in, I will keep trying to find new ways to get around the spasms. In the mean time I shall occupy myself with hounding the NHS for some form of treatment as I’m beginning to feel like I am drowning in a sea of untreated symptoms. I do not want to spend my days in bed, I want to be out and about!

Today marks the beginning of yet another battle against my Dystonia alien.

 

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Comments on: "Twisting Limbs" (10)

  1. Steve Riley said:

    Hi Rebecca
    My Wife Lisa has had some spasmas and even had her Big toe stand upright, as she cant move her toes i had to stand on her toe to make it go down, it did go down after a while, and sometimes she has had like cramp pains in her left leg, we spoke to Dr Edwards @ UCH and he increased one of her meds by 1 table and so far i think she has only had a couple where she was getting about 5-6 a week she gets about 2 a month, i’m not sure which med she is on, her phone has packed up today otheriwse i bet she would have said something on your blog, she should be home about 5.30 i’ll get to let you know
    Keep smiling

  2. Rebecca, I can totally relate to the notion of. “good” and “bad” limbs, even “good” and “bad” days. Having the pleasure to know you, I’m assured you will more than meet your challenges…and with a smile! Here’s to shrugging off what life throws our way. -Pamela-

    • Thank-you 🙂 I must say that on me ‘bad days’ I often read your blog, I find that your wit and how I can relate, has me laughing and smiling in no time xx

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