Posted in Archive, March 2014

Hertfordshire Group meeting

Yesterday I attended the Hertfordshire Dystonia Group meeting. I cannot even begin to describe the joy it brought me. Finally meeting other sufferers face to face and hearing individuals describe their journeys to me and the different ways they manage their conditions was a very comforting and freeing experience.

A speaker, who has Generalised Dystonia, had been arranged and I must say Suzie was absolutely inspirational to listen to. At 16 she had won a scholarship to train as a ballet dancer at the London Studio Centre, unfortunately three terms in she started suffering with Dystonia, that has gradually progressed. However she is such a positive, determined, talented woman and has not let Dystonia stop her in the slightest. She now created ActOne ArtsBase which is a platform for young people and adults with and without disabilities to explore dance. The work she is doing really is amazing. For anyone wanting to check her work out – http://artsbase.org.uk/dancebase.php

Within the talk that Suzie was giving she mentioned how felt that exercising helped her manage her spasms. This is a theory that my personal trainer has touched on several times with me. Whilst certain exercises may trigger a spasm most tend not to. This is something that I have noticed, and it amazes me, for example I can ride a horse but I am unable to walk. One of my spasms involves a rather violent arm spasm/twitch, out of the many people I have spoken to online not one of them has had this particular symptom, which has gotten me into a few awkward but amusing situations. So I was delighted when it transpired yesterday that Suzie also has this spasm, having someone else say yes I do that too, made me want to laugh out loud and breathe a sigh a relief!

Meeting everybody yesterday has given me such a big positivity boost and in a way normalised Dystonia for me. Everybody was so lovely, if it had not been for the fact my body had been deteriorating I would happily have spent several hours more sitting there getting to know everyone. It was perfect.

Posted in Archive, January

Hospital visit and a girlie shopping day!

Today started out on a bit of a low but ended on a high. This morning my step dad and I, set out rather early to battle the snow, to get me to a hospital appointment in Chelmsford, Essex. The drive normally takes an hour from Tring (Hertfordshire) but due to snowy conditions took a lot longer than expected and at times we were doubtful we would make it there on time. Thankfully we arrived at the hospital 20 minutes early so had time for a quick coffee before going into see my consultant.

I was getting the results back from some procedures I had recently had (2 different types of Endoscopy’s) , in relation to difficulties I have had for some time with vomiting  regurgitation and acid reflux. It turns out I have a condition called Rumination syndrome. For many years this condition  was thought to be a psychogenic condition that only affect infants and mentally disabled people. However, more recently it has been discovered that it can affect healthy infants, adolescents and adults as well, and in the majority of cases is not psychogenic… yet they still have not found out what causes this. It is poorly understood and is often unheard of by the medical profession, patients and public. Unfortunately there are no pills or surgery to cure the condition  My consultant also believes that I have Dystonia affecting my Oesophagus and thinks that this aggravates the Rumination Syndrome. However, the Rumination Syndrome, does not really bother me at the moment, so I am not to fussed about it. I know that by the time I wake up tomorrow I will most likely have forgotten all about it. That may sound silly but I do not see the point in concentrating on the negatives in life.

On a more positive note however, whilst I was in Chelmsford today, I went and met up with one of my close uni friends, and had a fabulous girlie day out shopping! I tried to push myself around the shops, however my arm was not at its best and after sending a number of objects flying in New Look, we deemed it sensible for Emma to spend the rest of the day pushing me around. The poor girl.

I had such a fantastic time. Not only did I get to have a good catch up with her but I also felt like a normal everyday young adult! I did not have my parents with me, which gave me more independence, and I felt like I was on top of the world. The day went perfectly minus one or two spasms. It gave me so much confidence.

I was rather sad to leave Chelmsford, as when I was at uni there, I completely loved the city, and could not imagine ever moving away from it. The last time I was there was the day I moved out of the uni accommodation in July last year, after Dystonia put a stop to my Midwifery training.

However I refuse to focus on the negative. I am concentrating on how much of an amazing day it was and it was so good to see my friend. I am completely exhausted from it, so I am going to bed early tonight. I have a great week planned, a friend is coming to see me on Wednesday, I am going riding on Thursday, another uni friend is coming to see me on Friday, my boyfriend is coming round on Saturday and my grandparents are coming over on Sunday! It is going to be a good week.