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

I have recently noticed that in life we underestimate our own strength and the strength of others. If you had told me two years ago that I was going to rely on a wheelchair, have seizures and suffer from agonising spasms every day, I would have told you that there was no way on earth I could deal with that. I also would have been terrified about the impact it would have on my family, my mum works full-time and studies for a degree, my step dad works full-time, my youngest sister is about to start her GCSE’s, my brother is just about to do his last GCSE’s exams and my other sister is just about to start her last A level exams, none of them would need me causing problems.

However now we are living that reality and strangely we are managing to cope. It is extremely hard and some days I have no idea how we are managing to deal with it all, but at the end of the day it does not matter how we are dealing with it, the fact that we are somehow coping is all that matters. I often feel like we are treading water and that at any minute something could go wrong, but it doesn’t.  Yes we have the odd incidence that knocks us back but as a family we support one another and that is what keeps us afloat.

There have been many evenings where my youngest sister, who is 14, has sat on my bed supporting my head and making sure that I don’t hurt myself while I seize or spasm. This sometimes upsets me because my 14-year-old sister should not be taking care of me, I should be taking care of her! Yet she is amazing and has the strength to do this, and she makes me laugh when ever I regain consciousness. My other sister and my brother have both also helped me on countless occasions. They are 16 and 18, again I want to look after them, however that’s not the reality right now.

The strength of my family amazes me everyday. Take this morning for example, I spent an hour and a half seizing and spasming on the kitchen floor, my mum also spent that time on the floor making sure I didn’t hurt myself. The rest of my family helped out, and then went around their own business like it was completely normal. I am so happy that incidences like this can be treated as normal as it takes away the ‘scary’ aspects of it.

I can’t imagine having to fight Dystonia on my own, and I am in awe of the people who do so everyday! Everything I have gone through over the last 10 months has been made so much easier by my family, I am so thankful that I have such strong, caring people in my life.

You never really know how strong you are until life decides to test you. A lesson I have learned from Dystonia is  never to doubt your inner strength, leap at every opportunity and fight with all your might every day. If you doubt yourself and back out you will never know what you are capable of doing. So embrace life and leap through every open door.

 

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Comments on: "Struggles develop strength!" (7)

  1. Beautiful blog today, truly reflrcting your strength xx

  2. sandy evason said:

    Well Becky, what an amazing Soul you are and how wonderful that, although you have been through such a lot of rubbish you are still able to see so much good in yourself and those around you. So many people would have given up, but not you. You are an inspiration to so many and I send my love, healing thoughts and strength to you and your family in this horrible battle. I hope you are still managing to go riding and that it, in some way, helps. Keep on keeping on and know that there are many of us out here who have no idea of what it must be like for you and your family, but we are all cheering you on and sending positive thoughts that this ‘storm’ may soon abate. Love and hugs to you and your family xx

    • Hi Sandy, thank you for leaving such a lovely comment it was uplifting to read. I am managing to ride, I got rode for the first time in 8 weeks last thursday, its not on this week but I shall be back riding the week after. Thank you so much for your kind words xx

  3. Eileen Donahu said:

    Well I have recently started reading your blog. You are something else!! That’s all I can say. You have fortitude and strength beyond most people that suffer with the same. I have dystonia. I try to go about and do what I can and what I can’t do I save for another time. I spend lots of time doing things to help my brain. I try and think positive at all cost. Its the only way to get through this. You seem positive!!! I am not in a wheelchair although I sit a lot. I have a hooveround but its on the blink….It was just given to me…I cannot walk long distances so I wanted it for the park and just rolling around when out side. My family is super great also. Especially my husband. We are both Christian and believe what was in out marriage vows…(sickness and health) He has been with me. Well, I am sorry if I am too chatty..lol Do you have Skype? perhaps we can chat on there. edonahue4 is my name Lets talk soon….Best of everything to you. You are an inspiritrational person and thank you for that. sincerely, eileen

    • Hi Eileen, firstly thank you for leaving such a lovely comment, it is always refreshing to get positive feedback. I am very glad that you enjoy reading my blog. Having a supportive family I think it is an extremely important think to have when fighting illnesses such as Dystonia. I am also Christian and find that my faith is one of the key elements that helps me to battle daily against my dystonia alien.
      Yes I do have skype I shall add you in a few moments, would be lovely to have a chat. Best Wishes
      Rebecca

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