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

Posts tagged ‘point of view’

Wheelchair Outings

Over the last few weeks several of my consultants have advised me to stick to bedrest and insisted I use my wheelchair if I choose to go out. With most of my recent trips out mainly being hospital appointments, this wasn’t too hard, and so I didn’t get too worked up about it. I will always be the first to admit that I’m not great at being in a wheelchair, it’s not the lack of independence that bothers me (as the whole point of the chair is countering how dependent on others I am), no my issue comes from trusting no-one, including myself, of being in charge of a wheelchair

These issues come from within, and anyone who has paid witness to my attempts to push myself will agree, I am awful. Spatial awareness and coordination are key components when nailing the art of wheelchair driving; skills I am lacking in. I am surprised shopkeepers don’t barricade the doors when they see me coming so as to preserve their stock. The most impressive incident was in New Look around 3 years ago, the domino’s effect I caused in the sale aisles was comedy gold. Due to my interesting wheelchair skills, I tend to presume that those pushing me will be just as awful as myself, resulting in many ‘please don’t kill me’ panicked expressions whenever they dare to venture near a curb! In my opinion wheelchair driving lessons should be part of the deal when being prescribed one.

Yesterday Damon and I moved into our first home together, so decided to take a trip into town this afternoon to pick up the odd household supply. We’re very lucky that the area we live in is rather flat, it couldn’t be more perfect, this means that I’ll be able to get out and about even when my conditions are severe, which is something that previously would have been impossible. Damon’s quite adept with the wheelchair (we’ve yet to crash in to anything), but that didn’t stop me from pulling hilarious terrified expressions repeatedly whilst we were out today.

 

Happily away from any curbs…reenactment of curb fears

When I was first prescribed my chair, although it provided me with freedom, I found accepting that I needed it hard. In my eyes, it was a reminder of what I was unable to do. Now when I look at it I automatically smile, my fear of it always provides so much laughter, and it enables me to do every day activities, something that I’m extremely grateful for.

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My big 4.

This morning I was feeling pretty down. All I could think was why me? After everything I have already gone through in my life, how was this fair? After feeling depressed for a few hours I started to think about the way I was looking at my life. At that moment in time I was looking at it all wrong. I was allowing my Dystonia to get on top of me, and I was looking at life from the wrong the point of view.

Instead of filling my head with negative thoughts, I started to focus on the positives. These are my 4 big positives.

1) If I didn’t have Dystonia then I wouldn’t have raised over £700 for the Dystonia society, a charity that provides fantastic support for sufferers.

2) Through this, I have brought awareness of Dystonia, to not only members of the public but also to members of the medical society who had not heard of Dystonia or seen a Dystonia patient before.

3) If I did not have dystonia, then I would not have had created this blog. This blog has not only raised awareness but has also put me in contact with some amazing people!

4) Dystonia has given me strength! The strength to go out in public in my wheelchair and not care what people think. The strength to stand up to the medical society. The strength to speak out and raise awareness! The strength to carry on fighting even when things are looking bleak. The strength and the determination to show the world what I can do. The strength to keep on believing that one day there will be a cure.

 

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