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

Independence has been a big issue for me ever since Dystonia hit me. I went from living at uni and being very independent to moving back into my family home and relying on my family to do everything for me. Simple things like just going to get a drink or going to talk to a member of my family in the other room became impossible tasks. To get around my house I relied on my parents to put me in a wheelchair and wheel me round. I often found and sometimes still do, that I push myself too far in my attempts to do things for myself and end up causing more spasms, however this never bothered me as I still get that sense of achievement by accomplishing the task.

In the beginning simple things like that fact I could dress myself and do my own hair and makeup were enough for me, as even though they were hard I managed to do them without any help. Sometimes this meant it took hours but I  loved it. Over the months though my desire for more independance built up. I managed to fulfill this desire once a week by riding, where I was in complete control of both body and horse.

Recently though I have been trying to explore ways where I could expand my independance without risking setting off more spasms. At first I was drawing blanks, then it hit me! I could bum shuffle! For those of you who are unfamiliar with bum shuffling it is when you sit on the floor and move using your legs and hips to pull you along, it takes awhile but it gets the job done.

This simple technique has left me thrilled. There are still moments where I need to be in a wheelchair as my spasms are bad and I am simply not well enough to do it, but the majority of the time I am able to. Things like going into the living to watch TV with my family or have a gossip are now so much easier.

Last year I felt like it was the end on the world and that Dystonia was consuming every aspect of my life. Now I am an empowered determined fighter, craftly finding ways to get around the Dystonia.  One day I shall be completely free!

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