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

Posts tagged ‘pictures’

Reflection

When I saw my personal trainer Beckie the other day she pointed out to me that she had trained with me for a year now. Reflecting together on the progress I’ve made in the last year was a real eye opener. I think sometimes I forget just how much I have improved, I allow myself to become absorbed in the pain and the spasms. I focus on fighting constantly against the Dystonia. When I met Beckie I could barely stand for even twenty seconds without my legs spasming, my whole body out of control, I was completely reliant on a wheelchair. Lyme disease was eating away at my life and I was fighting what felt like a losing battle.

I remember the first time Beckie came round; it was a meeting between herself, my mother and I, to discuss what exercises I could do without setting a seizure off. Although our aim has always been to not trigger a spasm, I’ve always made it clear that if I spasm, I don’t mind. Let’s pause, wait for it to pass and then carry on. I’ve carried on with my mind-set that my brain will learn (I understand that this is unlikely but a girl can hope)! When we began it was completely baby steps, learning what my body would cope with and what would cause it to throw a complete fit.

Now, after being on Lyme treatment for a year, and finding a regular Botox regime that works for my Dystonia, I am capable of so much more in our sessions. Some exercises still cause my body to go into spasm, but I apply the same method as I did a year ago, pause, wait and then continue. It works every time. Beckie has helped me strengthen my joints after my body successfully caused a lot of damage to them. I will never forget the look on my physiotherapist face when she first assessed my legs and realized the damage the spasms had done to the ligaments. I’ve gone from not being able to stand for more than twenty seconds to being able to walk. I admit I need knee and ankle splints to be able to do so, and sometimes I need walking sticks, and if I’m having an awful day I rely on my wheelchair. BUT I have made so much progress. I don’t reflect often enough. Looking back on this time last year I cannot believe how far I’ve come. I look forward to the progress I can make in the months to come. Learning to manage these conditions one step at a time.

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Tea Party Success

Yesterday I threw a fund raising tea party to raise awareness and funds for The Dystonia Society. The day exceed my expectations by miles, which was fantastic! More people than I had anticipated turned up which was amazing and really added to the day! Our house was constantly filled with people drinking tea and eating a variety of cake!

What amazed me the most was how generous people were with their donations, it was really very touching! Lots of people read through the leaflets that the Dystonia Society had provided us with and asked me a lot of questions, this was fantastic as I felt that everyone there was really interested to learn more about Dystonia.

At one point in the afternoon I was shaking my sisters friends hand goodbye when my hand suddenly spasmed. I was slightly embarrassed as I was unable to let go of his hand and the spasm was just getting tighter, luckily he found it rather amusing and said it was fine and wiggled his fingers out of the spasms grasp. This provided great entertainment for everyone in the room and also showed them a glimpse of just what my little Dystonia alien could do.

By the end of the tea party I was completely and utterly exhausted, but over the moon by how much we had managed to raise! So far a grand total of £577.26 has been raised which is mind-blowing!!! Dystonia awareness week has only just begun though and my hair shall be staying blue for the week as part of the Go Blue Movement to raise awareness and funds for Dystonia. So if you would like to help me raise even more money for The Dystonia Society please visit my Just giving page http://www.justgiving.com/Rebecca-Moller1 .

Here are a couple of pictures from yesterdays fantastic tea party!

 

Dystonia Awareness Week!

Dystonia Awareness Week is fast approaching, it runs from Saturday 4th May to Sunday 12th May. Last year my mum, step dad and I ran a 5k fun run up in London and raised over £700 for the Dystonia Society! However this year we had to rethink how we would raise awareness and funds for The Dystonia Society as now I am in a wheelchair the 5k fun run is out of the question.  After a quick search on The Dystonia Society website we decided that we would throw a tea party. There is also a slight competitive aspect to it, as everyone sends in the their tea party photos and The Dystonia Society judge the best.

I am also taking part in the ‘Go Blue Movement’. I am dying a section of my hair blue during awareness week to raise funds and awareness for Dystonia. The Go Blue Movement is an international movement, which started off in America! If you have not heard of it yet then I am sure over the next few days you shall hear more! You can easily take part in it by dying a section of your hair blue! If you do not want to use permanent dye, you can easily use a spray in, wash out dye!

If you would like to help me raise funds for The Dystonia Society then visit my just giving link! Every bit will make a huge difference for this small but amazing charity! http://www.justgiving.com/Rebecca-Moller1

 

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