Fighting Dystonia, Chronic Lyme, EDS Type 2 & more… any questions?

Posts tagged ‘fun’

Pain Free Celebrations

Todays blog is only a quick one, but I just want to start it by saying I hope you have all had a fabulous Christmas. I have been extremely lucky and spent this Christmas and my 21st Birthday seizure free and with only a handful of spasms! I feel very blessed to have been able to spend both occasions in very little pain, especially as pain is 99% of the time my constant companion.

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Over the Christmas period I have felt the best I have in a long time. Between regular Botox injections for my Dystonia, antibiotics for my Chronic Lyme, and all the other meds thrown in, I have managed to reach an incredibly happy place. I have managed to reach a place where I am not scared to chew my food incase my jaw tremors, where I can speak clearly, where I can brush my hair without the brush getting stuck in my hand. I am in such a different place to where I was last year and I am so unbelievably happy.

Thinking back to last year, and then looking forward to the upcoming year I am filled with hope. So much has changed for the better this last year, and I hope it continues in this way. This time last year I had hoped that I would eventually learn to live with this condition, and in the space of a year I have learned to live with it, and tricks to sneak around it (the power of hot water bottles), I have learned that no matter how hideous things may seem it does get better, that I can have a life.  I have learnt so much, and I am sure I will learn more. In between kicking my Dystonia Aliens butt I plan on having as much as fun as possible.

Incase I don’t have time to blog again beforehand (I’m fantastically busy at the moment :-D) I wish you all a fantastic New Year full of joy.

 

My first RDA Lesson

There are no words to describe just how over-joyed I was yesterday. It was a day of sheer bliss!  Yesterday I had my first R.D.A (Riding for the disabled association) lesson. It had been 5 years since I had last ridden (when I was able-bodied), and I was desperate to get back on a horse! I must say that the volunteers who run the group are amazing! They are such caring, upbeat people and it is such a vibrant environment! You could not ask for a more helpful or nicer bunch of people.

As I am in a wheelchair, the volunteers had to be slightly inventive, as I could not mount a horse in the typical way. Instead, once I was on the mounting block, two of the volunteers lifted me by my knees, up on to the horse, so that I was sitting side-saddle. I then had to swing my Dystonic leg over the horse’s neck, so that I was sitting correctly. I was thrilled that I had managed to get on!!!! As I knew there was a very good chance that I may not be able to.

I then had 3 volunteers stay by my side throughout the lesson. So that if for some reason my dystonia played up or if I had a seizure, they would be able to keep me from hurting myself. I was expecting to only be allowed to walk in my first lesson, especially as we did not know how my leg would react. However I was in heaven, when I heard the instructor call my name and tell me to go for a trot!!!!! At first the trots were short, so that we could establish my strength, however throughout the lesson they got longer and longer. I could have cried with happiness. I have loved horses all my life, and started riding at the age of 5. Ten years later I had to stop due to injury. So you can imagine my joy at being able  to get on a horse again and then being able to do more that I expected!

I managed to do the entire lesson, which was incredible!!! To dismount from the horse, things had to get inventive again, as I was unable to do this in the typical manner. Instead I swung my leg over the horse’s neck again and sat side-saddle. Then with my arms wrapped round the volunteers, I let myself slowly slide down the horse to the ground. It was an amazing day! One that I will not ever forget. I cannot wait to go back next week for my next R.D.A lesson!

This is a picture of me riding Connie, just getting ready to dismount at the end of a fantastic lesson!

I also attended my support/research group last night. I really do love this group. It does a slight bit of meditation, free movement, discussion etc. To an onlooker, it would most likely look that we are all slightly crazy, however everything we do, I find leaves me feeling relaxed and peaceful by the end of the session. It was a perfect end to a rather heavenly day!

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