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

Posts tagged ‘Friday’

Learning Curves

Over the last few days I have gone from thinking from one point of view to another. The reason for this is that on Friday and Sunday night I fell. Both falls set of many hours worth of seizures and spasms. Sunday nights fall was the worst. No one was in the room with me when I fell, and I have little memory of the day itself so we can only guess what happened. However one thing I am sure of is that is I really hit my head when I fell. What I hit my head on we don’t know it could have been the piano, the computer, the box or my bed. I am lucky that I didn’t do myself  any real damage. However that fall in particular caused a lot pain, which consequently  meant that I spent the majority of Monday unable to feel my right leg as my brain had disconnected from it, which was not an enjoyable experience. On both Friday and Sunday night, I experienced moments where although I was conscious I was unable to communicate properly. I found that I could not form words or get my mouth to move. Sometimes I was lucky and I could wiggle a finger to tell my mum I was conscious. This really freaked me out and got me thinking. The following picture describes best how I have felt on and off over the last few days.

I want to live my life! I am 20 years old and spend most of the day fighting with my body, just to get to the other room to see my family. I leave my house once a week if I am lucky. I am beginning to feel slightly insane. I want to go back to last March, spend my days on placement and my nights clubbing. I want to be able to hop on a bus and go to the pub to see my friends. I don’t like not having control over my life and my body. I feel like I spend my days shut up hiding from anything and everything that might cause a seizure or a spasm. Yet even being shut up does not prevent them. I still end up in agony, struggling to control my body.

However this second image depicts the second line of thought that I have followed over that last few days. I continue to mourn for a life I no longer have, one that I may never retrieve but at the same time I might. I need to stop mourning for the life I knew and embrace the life I am currently leading. However that does not mean the I give up hope for my old life. I shall always hope that I will be able to return to some sort of normality. For the time being I have to focus on the here and now, accept what is and carry on with my life whilst fighting for control.

I need to learn how to balance having some sort of normality whilst also making sure that I do not push my body over the edge. Like everything in life it is simply a learning curve, one that with time I shall eventually master. I need to remind myself often that I have only been suffering for about 8 months, I am still at the beginning of a very long road. I need to have patience and trust that everything I go through will give me the strength to keep on battling everyday, and eventually beat Dystonia. So for now I shall take deep long breaths, stay calm, and keep fighting on.

One day I shall beat my little Dystonia alien once and for all.

 

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Doctors, Star Wars, Horses and More!

This week has been rather busy, which has left me feeling tired but extremely happy. On Monday I visited my GP to seek some advice. To be honest he was not really able to give me any, however I expected this. I explained to him the disastrous trip to A&E the other weekend and asked if he could give us any advice for if this happened again. Whilst he was shocked by the treatment we had received, he was unable to offer any advice about what we should do the next time this happens. On the bright side he has said that we can continue to use the muscle relaxant that we were given on the Friday in emergency situations as a last resort. We are still waiting to hear back from my neurological consultant in regards to advice/explanation on why the sudden change in presentation etc.

On Wednesday I had a couple of friends round, and I had a really good laugh with them. It felt so good to feel ‘normal’. I spent the day laughing and watching Star Wars with them, which was pretty much perfect!

Yesterday I was well enough to go back to riding after having to have a week away from it. I was  completely ecstatic! The lesson went extremely well, and I managed to do more rising trot than I have managed to do before which was incredible! The horse I ride, Connie, is extremely patient, which gives me so much confidence, as I feel that my spasming limbs will not cause to much of an issue. I came home from riding covered in so much of Connie’s hair that I was beginning to look a bit like a horse myself.

Last night I attended the penultimate pain support/management/research group. As usual it was fantastic and I had a good laugh with everyone and left it feeling very relaxed. I have suggested to the group that once it finishes we arrange to meet once a month for a coffee, so that we can all continue to support each other. It is something that they all liked the sound of as we have get on so well together.

Today I am exhausted, however I am glad of this. I am not used to lots of stimulation so after having a busy few days, I am going to relax and take it easy. I also have a busy weekend planned with friends visiting me on Saturday and Sunday. This week has been perfect and I have felt so ‘normal’ through-out it. I am an extremely happy girl.

The following quote/image, is one that I say over and over to myself every time I feel like I am being defeated or that things are hopeless. Just because I have not managed to cope today does not mean that tomorrow will be the same. Tomorrow I could think of something else to try/do. I just need to keep on smiling. As long as there’s a smile on my face then I know I am winning.

 

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.

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