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

Emotional Turmoil

Currently I feel like I am a whirlwind of emotions – confusion, terror, anger, helplessness – are to name a few. From the 1st of September almost daily I will get another test result back from the private hospital, and then on the 10th I shall attend to see if they have decided to treat me or not. If they do agree then I cannot even begin to describe the relief I would feel at finally getting the correct treatment. But it would be very bittersweet relief as I would have to somehow fund this treatment.

Yet the panic I am already feeling about finances is nothing in comparison to the terror I feel about having to deal with the spasms caused by my Lyme Disease on top of my Dystonia again. I know that I have dealt with it all before so I CAN cope again, but I don’t want to. The thought of it sends me running for the hills. When my hands spasmed before I frequently used to tell my mum that I felt like I had pulled my fingers out of joint, I’ve recently been diagnosed with Ehlers Danlos type 3, which makes it highly likely that I was subluxing in my fingers. To be frank I am scared of the extra amount of pain that untreated Lyme Disease will bring. At the moment with oral treatment it is dulled down, manageable. Which has enabled me to learn to cope with Dystonia and the pain that it causes. I don’t want to go back to being rushed by ambulance in to hospital every month. 

I have enough oral antibiotics to get me through to the middle of September at the moment. From our recent experience of coming off the antibiotics and the deterioration that that caused I am loath to go through it again. Its quite selfish really as I know a lot of my fear stems for not wanting to lose my hands again. I love being able to do simple activities such as brushing my own hair. It is a sign of independance and I get such satisfaction from being able to do tasks such as this.

The majority of my Dystonia is well controlled with Botox, and Benedict is not inflicting too much pain at the moment. I just want to maintain/improve my condition. In the meantime I shall keep my fingers crossed that the private hospital wants to treat me, and wish to the NHS fairy that they open their eyes and acknowledge chronic Lyme, and start treating us sufferers properly!!

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Comments on: "Emotional Turmoil" (4)

  1. Sarah Pekarske said:

    if you qualify you can contact allergen and they will cover the cost of Botox then you contact the DMRF and find a doctor willing to do it pro bono and if you have insurance and can’t afford the 20% copay you contact NORD National Organization for Rare Diseases there is a lot of help out there get with the DMRF make a $5 donation and become a member

    • Hi Sarah,

      Thank-you for your reply. The NHS (im UK based) are currently covering my botox, it is my IV antibiotics that I need that they will not fund, have been fighting them on this for over a year now. However I hope others who are struggling to fund botox see your comment!! xx

  2. Rebecca, So sorry you are having such a rough time of things. Sending you a great big hug. -Pamela-

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