Posted in Archive, September 2014

Excitement and Nervousness

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Living with Dystonia and my other medical conditions guarantees that no two days are ever the same. I learnt that a long time ago. Yet two years into it it and it can still shock me. The difference in me when you compare last Sunday to today is astounding! Last Sunday feels like a life-time ago, not a mere week. Last week I was confined to my bed all day, so ill that a member of my family was with me all day, today I am pretty much pain free, hardly spasming and enjoying every second of it.

Last week it was as if we had taken me off all my medications. I was blind, every part of me was spasming. My jaw spasmed to the point it eventually dislocated! There are not words to describe the pain I was in, or the pain caused by attempting to swallow pain killers and muscles relaxants whilst in that state. At points the only way I was able to communicate to my mum was by twitching a finger to let her know I was conscious but my body was out of my control. It was hell. I have not had a day that bad in such a very long time.

Today I have no pain medications in me, I am able to move about without setting another part of my body off. The only parts of me that are daring to play up are my neck and jaw. This is not surprising as my Botox injections are due Tuesday. However considering that fact I am feeling extremely happy and lucky that they are not spasming more than they currently are. Its as if Benedict is still recuperating from last weeks attack.

I have started treatment for my Chronic Neurological Lyme Disease now. It shall be extremely interesting to see which of my spasms were due to the Neurological Lyme, and which are caused by the Dystonia. Hopefully over the next few weeks I shall start to see improvements and get an idea of what spasms I shall have to live with and which ones I don’t. I’m extremely excitement but nervous!

 

 

Author:

I'm 27 years old, a mother, author, partner and spoonie. I suffer from Dystonia,POTS, EDS, Osteoarthritis and Lyme Disease. I have set up my blog to help spread awareness and bring light to this condition. This blog will be full of all my experiences that happen during my dystonia and chronic illness journey, from natterings, musings, moans, laughs, highs and lows. :-) It will be a little bit of everything

5 thoughts on “Excitement and Nervousness

  1. Good luck with starting on your Lyme journey! A lot of lymies have spasms, they tend to very slowly stop with treatment but as you have other complicating factors it might take a very long time indeed! You’re probably already on it, but correcting mineral deficiencies like magnesium makes a bit difference to twitches and spasms. Mine got a lot better in the first 6 months of treatment, including bucket loads of magnesium.

    I think I may have been following you ages and ages ago on my old blog. I’ve just started a new one called Divorced Diseased & Dangerous, it’s not so much about Lyme but about being sick generally really, with a good sprinkling of silliness 😀

    Anyway, good luck again for starting treatment, the first 6 months are probably the worst, but it DOES get easier and everything gets better. 🙂

    1. dystoniaandme – Tring, Hertfordshire, – I'm 27 years old, a mother, author, partner and spoonie. I suffer from Dystonia,POTS, EDS, Osteoarthritis and Lyme Disease. I have set up my blog to help spread awareness and bring light to this condition. This blog will be full of all my experiences that happen during my dystonia and chronic illness journey, from natterings, musings, moans, laughs, highs and lows. :-) It will be a little bit of everything
      dystoniaandme says:

      Thank-you Louise. I shall check out your new blog! I am on quite a few supplements to correct vitamins and mineral deficiencies such as vitamin B12 (which can cause neurological symptoms when deficient). Its good to know it gets easier!!! xx

  2. Dystonia Muse – I'm a friend, daughter, sister, creative mind, honorary auntie, fan of the quantum mechanical, hopefully one-day spouse, now also health care advocate, here to share my life-journey with the neurological movement disorder, Dystonia, which began with a "mis-step" when I was 8-1/2. Though Dystonia may have staged a coup over certain body parts, my heart and soul remain firmly my own. I invite you to join me on my quest to find the comedic lurking in this chronic epic!
    Dystonia Muse says:

    Rebecca, Thrilled to hear you are doing so much better. That darn dystonia is certainly unpredictable. Congrats on your 200th blog post. I’m a big fan of your site. xxx -Pamela-

    1. dystoniaandme – Tring, Hertfordshire, – I'm 27 years old, a mother, author, partner and spoonie. I suffer from Dystonia,POTS, EDS, Osteoarthritis and Lyme Disease. I have set up my blog to help spread awareness and bring light to this condition. This blog will be full of all my experiences that happen during my dystonia and chronic illness journey, from natterings, musings, moans, laughs, highs and lows. :-) It will be a little bit of everything
      dystoniaandme says:

      Thank-you Pamela. Dystonia is definitely a wild card! That means alot to me coming from you, as I admire your blog/writing greatly, so thank-you!! xxx

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