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

Posts tagged ‘book’

Harsh Reality

September 2011 I started at Anglia Ruskin University in Chelmsford on a Midwifery degree. It was the most amazing experience of my life. July 24th 2012 I developed Oromandibular Dystonia and was put on intermission for a year. Today I was withdrawn from university on debilitating health grounds. You have no idea how much I wish to pull my little Dystonia alien out and scream at him.

My university was extremely kind about it all and I hope that in a few years time if I am well enough that I can reapply to do my Midwifery degree. In the meantime I plan on doing a Level 3 in Anatomy and physiology, and once I’ve finished that I will see where I  go from there. I have known for a few weeks that this conversation with my uni would have to happen, and have dreaded it. I had hoped that as I knew it would happen that it would not be too bad however the reality is that I am extremely upset and want to scream at the doctors until they invent a cure.

I struggle to understand how it is ok for Dystonia to upturn, stomp all over and turn inside out our lives. I struggle to comprehend why sufferers then have to fight for treatment and care. I struggle to accept the reality I’m living. I won’t ever accept it, because none of this is ok. I know one day a cure will be found and I hope it shall be in this lifetime so that I can reapply for uni.

On a brighter note my body is not too bad today which is nice and a DVD called The Host which I have excitedly been  waiting for has arrived – It is a fantastic book and an amazing film. I plan on doing nothing for the rest of the day other the watch The Host again (even though I only finished watching it ten mins ago), and then I am going to indulge myself in a bit of 50 shades freed as it’s an easy read.

Tomorrow will seem brighter, and I will get there eventually, one way or another.

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A Year On

I am now a year into my battle against Dystonia and life has changed dramatically. A year ago I was a student midwife, now I am disabled and spent a lot of time trying to raise awareness of Dystonia. When I first received my diagnosis it seemed like the end of the world, I did not know how I was going to be able to cope with life. Now I am much stronger person filled with determination to make a difference.

I strongly believe that everything happens for a reason and even if you cannot see the reason at first, eventually you will. I believe I have Dystonia so that I can help raise awareness of the condition and help bring about a change so that sufferers receive better treatment. I still have a long road ahead of me but its one that I won’t give up on.

I visited my GP today to ask about further treatment for suspected Lyme Disease. I responded extremely well to the first month-long course of antibiotics, due to this my GP has prescribed me 8 more weeks of antibiotics to see if I have any further improvement on them. My main improvement so far has been in my hands, which has been an extremely exciting development for me. When I see my consultant on the 16th of this month I am going to put across to him that Lyme Disease could have caused my Dystonia. As Lyme disease is curable with enough antibiotics some of my current symptoms could disappear for good, and only the Dystonic spasms shall remain.

I also visited my dentist this morning to have my teeth cleaned. I can not rate the dental practice highly enough, despite my spasms and seizures whilst I was there they were extremely kind and patient with me. As my tremor is dislodging some of my teeth it is calming knowing that the dental practice will do all they can for me.

This afternoon I have a session with my reflexologist. I am so glad that she is coming today as I am extremely exhausted. It amazes me how quickly my body gets tired. I used to be able to be on the go all the time but now just two quick visits have left me half asleep.

I still cannot believe that I have suffered from Dystonia for a year now. Whilst I hate this condition, I also embrace it. By embracing Dystonia I am able to put all my energy into raising vital awareness and funds. The more awareness that is raised the sooner a cure will be found. My next awareness challenge I have set myself is to turn parts of my blog into a book. I  hope that by doing this more people will learn of the condition.

Dystonia may control my body, but I control the path I take in life. I choose to make a difference!

 

Reflexology Session

Yesterday I had my first reflexology session with a lovely woman. She was able to come to my house and do it, which was perfect for me as it meant if my body reacted badly to it then I was in the best place, with easy access to the necessary medication. I was hoping that by having reflexology I would be more relaxed and would be able to sleep better.

It was a fantastic session, that left me feeling extremely relaxed. I was so happy that my body did not react to the reflexology, which enabled me to relax and actually enjoy it. During the session she concentrated on areas that related to pain, my liver and my kidneys. The reason for this is that the amount of medication I am taking will not be doing my kidneys and liver any good, so by concentrating on them it should help to detox them.

I did not do much for the rest of the day as I was extremely tired from the session. In the end I went to bed around 8pm because I was struggling to keep my eyes open. Normally I would have read a book before I go to sleep to help relax my body, but I did not even have the energy to read. Most nights I do not get to sleep till the early hours of the morning and even then I will carry on to wake up 4 or 5 times due to painful spasm. Last nights sleep was amazing! I slept for a total of 13 hours and did not wake up once! I was even full of energy today which was fantastic.

I am so happy that I was able to get a good nights sleep, it made a real difference to my energy levels today. As the reflexology session appears to have had such a fantastic effect on me, I am planning to book more and see if these improvements carry on. I am extremely hopeful that these sessions will continue to have a beneficial effect.

 

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