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

Whether you are ill or not having a support system in place is something everybody needs. Everyone deals with varying difficulties in life, and whilst experiencing these a support network helps keep life ticking over and enabling you to feel like you can cope. Often during difficult times, it becomes very tempting, and easy, to simply shut yourself away from family and friends. I know personally that I would much rather deal with a problem by myself, this is simply because by talking to others the issue feels more real and daunting. However, acknowledging it and making plans to resolve it with people you trust is a key to moving forwards.

When I was first diagnosed with Generalised Dystonia in 2012 I shut myself away from most of my friends; even a trip to Tesco was difficult as I did not want others to see what had become of me and judge me. Reflecting back on this now, I know that this was more a fear of seeing others react to my spasms and having to admit that I really was having to deal with this. A huge chunk of me wanted to pretend it was simply an unpleasant dream. Despite knowing that talking amongst trusted individuals is helpful, I still fall back into bad habits whenever life goes slightly askew.

This past week I have been coming to terms and dealing with some difficult situations outside of Dystonia. Admitting that they happened and needed dealt with was a hugely difficult step, but a necessary one. My botox is a week late this time round, I am receiving it this coming Wednesday, so dealing with a combination of life being more flawed than usual and my spasms progressively increasing in severity, has been more than I felt I could cope with. This is where a support network is vital. Family and friends can help give an outside perspective on how to manage life events, and advise what steps to take. This is an invaluable tool! Sometimes though, you need more than just the loving circle of individuals. Realising this is key. I have just started talking to a councillor. This is something I had hoped I would never have to do again, but it’s been necessary and I know is helpful.

Living life with Dystonia is never going to be easy. I greatly admire every individual who does so. Realising when you need support is not a sign of weakness but of great strength. So please remember to talk to those around you. This condition drives us all barmy, sometimes we need grounding.

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Comments on: "Importance of Utilizing a Support Network" (1)

  1. Damon Stalford said:

    I have it and it hits hard. Mine actually ripped my neck apart and so I had to have a triple discetomy June 2014. I have spasms up and down my back and down both arms and even in my face muscles. It evens affects my throat aND speech at times. I do 12 shots of steroids every three months (neck area) and 6 monthly of Lidocaine and something else that I always forget. I was strongly advised not to do the Botox by three of my Doctors. I’m also on 120Mg. of Narcotics daily.

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