Posted in Archive, February

Positive Proactive Progress!

As I sit here, beginning another blog post that allows you all to witness what it is like to live life with Dystonia, I must admit that I have an almighty smile spread across my face. The last few days have each been perfect in their own ways. I spent the whole of Tuesday in bed recovering from Mondays lovely trip to Chelmsford. To some of you this may seem lazy or even a waste of a day, so let me reassure you this was completely and utterly necessary, I barely had the energy to sit up! Yet I was perfectly happy due to the fabulous day I had the day before. I am also enjoying some lovely choccies that my man brought me for Valentines Day.

Yesterday one of my oldest friends came to visit me. I had not been able to see him, in a long time due to me moving to Essex for university and us both being broke students. So it was fantastic to have a really good catch up, which was full of laughter. By the time he left, my spirits were soaring. Socializing does the world of good for me, it allows me to feel ‘normal’. He has promised to come and see me more often, as now I am only a 20 minute bus ride away from him. I shall hopefully see him again in just under two weeks time.

Today I had my riding lesson. Once again it was fantastic, I love the thrill riding gives me. There is nothing like it. The horse I ride, Connie, is so very lovely and patient, and puts up so well with my different style of mounting. We did lots of trotting whilst weaving in and out of cones today, which I loved. Towards the end of the lesson, with my instructor watching carefully, I stood up in my stirrups, whilst walking. I managed this fairly well, now and then my right leg would decided it had had enough and would shoot forwards, causing me to sit/drop back down into the saddle. However every time it relaxed again I stood straight back up. We did the exercise repeatedly until my right leg really had had enough and I lost the feeling/connection to it. Riding is not on next week as it is the local school’s half term holiday, so I am counting down the days until the 28th when I can go back.

Yesterday and today, I attempted placing my foot on the floor to see how it would react. When it was placed flat on the ground, it spasmed rather violently, and I had to wait a fair while for it to calm down. Once it had, I tried it again, though this time I only placed my toes very lightly on the ground. This time there was no reaction. This is good progress!!! I plan on doing this a few times a day, if this all goes well then in a weeks time, I shall attempt to put my foot flat on the ground again. I hope if I keep trying this, then I shall be able to get back some of the movement I had managed to build up back in December.

This week has truly been fantastic. With only one real hiccup,  my right hand decided it had had enough of me writing and decided to spasm violently. I happened to be holding a fountain pen at the time, so ink ended up all over my face, hand, quilt etc. However I found this to be quiet amusing.

I have several more brilliant days planned, which I am really looking forward to! I know that I am going to be completely exhausted by the end of it all and my body will most likely try to get revenge, however it is worth it! I have accepted that at this time because I have Dystonia and Non Epileptic Seizures, I am disabled, however I refuse to let these conditions control my life. I am going to live life the best I can, and I shall enjoy every second of it.

Just watch me!

 

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.