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

Posts tagged ‘patience’

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.

 

Life through my eyes.

When someone gets diagnosed with a condition that it is going to make an impact in some way, it is then that people show their true colours. I am sure many of you are aware of this or have even experienced it. For me it happened gradually, some people quickly disappeared out of my life, some stuck themselves firmly to me, and others decided to bow out later on into it. Although losing people you were close to is a painful thing, it also shows you the people who truly care about you.

Since being diagnosed with Dystonia I have met the most amazing people, with such beautiful souls. To them they don’t see the wheelchair and its occupier, they see a girl whose personality counts more than her physical capabilities.  For example, the incredible volunteers at my local riding school, who are part of the Riding for the Disabled Association. They are such vibrant beings, who managed to get me on a horse, despite all odds. There are no words to describe how much I love these volunteers, how much joy they bring into my life. Then there are my uni friends. They are such loving people. Despite the fact I moved back home, they are always there for me when I need them. They have rushed me to hospital at 2am, and joined me at many hospital appointments and a&e visits. Then there are the amazing people I know/have met through day-to-day life, who are caring and inspiring individuals.

My family has been amazing. They have coped with the spasms, the hysterics, the seizures, the pain, the hospital visits, the hospital admittances, the day-to-day challenges that Dystonia brings. It is their ongoing love for me that helps me through each and every day, that inspires me to keep fighting for control of my body.

At this time all the people above and so many more that have stayed close to me, have been a fantastic fountain of support. They help me through hard times in my personal life and with Dystonia. They show me the light, on days when I feel like hope is gone…and then they hand me some chocolate buttons.

Life is tough for everyone, in different ways for whatever reason. We are challenged by different issues. Some may seem big or small to others but you can never judge how a challenge is affecting someone without experiencing it yourself in their shoes. I can only hope that everyone has a support network like mine. As you never know just when you will need it.

Today has been a good one, full of much-needed distractions. I went riding and despite falling out the front door on the way there – I am ridiculously clumsy – I still managed to do rising trot without setting off a spasm. I am so lucky to be surround be such fantastic volunteers when I am up there, and I ride an incredibly patient horse who I completely and utterly adore! I also attended my pain support/research group. It is a fantastic group which does me the world of good. I can be so open and honest as everyone there can understand to a good degree what I am going through, yet I can also laugh with them at the same time.

Life is too short to be defeated by inconvenient challenges. Just because my brain has decided it does not want to work, does not mean I should hold my hands in the air and admit defeat. If anything it should fill me with determination to show my Dystonia alien just what I can do. My life goals may have to change because of it, but by no means should they get any smaller, if anything I should aim higher. You never know you may one day see me at the Paralympics, or I may be a best-selling author. Who knows what could happen! Who knows what life has planned for us! Embrace whatever style of life you have! Mould it to suit you, push you boundaries and never give up.

I think the picture below sums up my thoughts perfectly.

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