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

Posts tagged ‘scream’

Dystonia: Its a bit of a roller-coaster, would you scream or enjoy the ride?

In life everyone has their own hopes, dreams, demons and struggles. We each suffer and achieve in situations others would not. None of us, are the same, yet we all judge each other and ourselves harshly.  As a society we are very quick to overlook all the positive and beautiful things that surround us, we focus intently on negativity like vultures. If you are not careful, the pessimistic world that we live in can appear suffocating.

Yesterday I decided that I felt well enough to push myself around a Garden centre that we visited. I was over-joyed that I was pushing myself for so long without setting off a spasm in my hands. I even managed to push myself up a slope for the first time. Now I know that does not sound impressive but it was a fantastic achievement for me, that I am very proud of. It took me a good minute to get myself up it, but I did it myself without any help!  I was having a great time,  and even had a sense of freedom due to pushing myself. However a handful of people who I came across that day, did not see the girl achieving her goals and enjoying a new sense of freedom, they saw someone who was slowing them down, a few tutted or stared as they paused to let me pass. Now I just smiled sweetly each time, as I was having too much fun to pause and give them a lecture on Dystonia. I wish those people had taken the seconds that it took me to wheel myself past them to appreciate some part of life instead of focusing on a negative, we were in a garden centre, a place where they could have easily focused on the beauty of nature.

Dystonia, like life, is one giant roller-coaster that will take you from feeling on top of the world to rock bottom in a number of seconds. You can choose to become a vulture like the majority of society, feed off endless negativity and suffocated in it. Or you can choose to accept there are days when you’re not going to be on top of the world and things will look bleak, but you can still take the time to appreciate what you have in life. I could very easily roll over and feel sorry myself, and stop trying to defeat this hideous illness. Instead I fight day and night against Dystonia, I try my best to be optimistic (though some days I can be a bit grumpy), I appreciate everything this illness has done for me e.g brought me closer to my family, showed me friends in the unlikely places and much more.

Dystonia is a challenge, and I plan on enjoying every little achievement I make. Small steps can lead to big things, who knows where I’ll end up.

Life Challenges: Would you fight or would you run?

At 20 years old I didn’t expect to feel like my world was crumbling around me. I thought that I would be out clubbing with my friends, or trying to stay awake during a night shift on placement. I expected to be having the time of my life. The reality is extremely different to the expectations I had.

Today I felt like life was trying to show me just how difficult it could make my life. I knew this weekend would be a hard one anyone due to personal things, however it has so far been hell. Yesterday afternoon until I went to bed, my hand did an extremely painful spasm, that resulted in me having hours of Non Epileptic Seizures, with only a few seconds of consciousness in between. Then today I have spent the majority of the day unconscious having seizures. Again these were caused by a bad hand spasm.

I feel like every bit of normality I had (e.g uni, relationship, walking, freedom) has been cruelly snatched away from me. I have to fight constantly with different government departments, with the NHS, and with my own brain. I won’t ever give up, but at the same time I am already very emotionally and physically tired.

Today due to spasms and seizures I have not been able to get out of my bed. I have felt so many emotions, such as anger and sadness, in some ways I feel as if today has defeated me. Now I know I will get up tomorrow and continue to fight, but I should not have to fight! Days like today I dread because of the way I feel physically and emotionally. I am lucky that bad days are few and far between. I have not felt this bad since January 1st. I will never stop fighting Dystonia, just like I will always campaign to raise awareness of it.

I keep thinking how silly it is of me to get so upset over everything that has happened to me. I could be so much worse off. I guess in a way I am grieving for the life I had, whilst carefully trying to create some degree of normality for myself. Life challenges us all in different ways. Whether we run screaming away from them at the top of our lungs or battle it with all we have, is up to the individual. For me I shall battle on, whilst knowing that on some days Benedict is going to have won and I am going to be unable to cope, but that is just at that moment in time. Who knows how I will feel the next day or the next month or even the next year! I need to learn when to accept defeat for that day and start preparing myself to battle on the next.

Image

 

Tag Cloud