As I have mentioned before my body does not react very well to me getting ill, even colds cause my Dystonia alien to act up more than usual. Therefore I have spent today spasming, having seizures and trying to find the energy to get things done. I have not slept well the last few nights which I know will be aggravating my symptoms – thankfully I have reflexology tomorrow which should help with my sleep.
I have spent a lot of time thinking today about goals. I have lots of long-term ones that I am determined to achieve, but it occurred to me today that I also needed short-term ones as well. Goals that would keep me motivated even when I am feeling under the weather and my body is at its worst. I have decided that my first goal will be to be to walk in my splints around the house by Christmas without crutches! As I am starting neurophysiotherapy soon I see no reason as to why this cannot happen. I was walking around the house last Christmas and I shall, with the aid of my splints, be walking by this Christmas.
There is a girl on my college course who I find very inspirational. Despite being young (17), she is coping amazingly well with a combination of different conditions. One of her issues is that she cannot feel her legs – she has some very limited feeling in her upper thighs but that’s it and yet with the help of crutches she walks. Now most of the time I can feel my legs, and I have the extra help of splints, so it is time to put them to good use and start walking!
I know that I may not be able to walk every day due to my Dystonia aliens games, but I will walk as far as I can every day, whether that only be walking 2 footsteps or walking for 2 hours, I shall every day walk! And I shall do this by Christmas!
I have been blogging for a year today! I started my blog to help raise awareness of Dystonia and what it is like to live with it. I was inspired to do this as when I first became ill and got the diagnosis I realised just how unknown this condition is among both the public and the medical society. I decided I wanted to educate as many people as possible about Dystonia, and blogging seemed like the best starting point as society use the internet and social media so much.
Since I started this blog I have had many highs and lows, I have fought to get help, I have had many ambulance trips, and experienced so much more. If you told me a year ago how completely different my life would be as to when I started this blog I would have been adamant about my inability to cope with being in a wheelchair and would have been terrified. Now I admit I have been terrified on many occasions especially when the Dystonia spread through my body, and I don’t like being in a wheelchair, however Dystonia has made me a much stronger person and has inspired me to do my utmost to spread awareness .
I knew when I started this blog that I would have to be extremely honest in everything I wrote and not sugar coat any negative experiences as that would be counterproductive. I have tried my best to write an equal amount of positive and negative posts, however Dystonia is an unpredictable thing and it does not care whether it bring tears to my eyes with laughter or with pain. Many blog posts have been hard to write, such as when writing about my legs being affected by Dystonia I found myself in tears.
Blogging to raise awareness is just the beginning. It has been a flicker of light in the bleak unknown that surrounds the condition but if all of you who read my blog, go on to share it on your Facebook or Twitter etc then that glimpse of light shall slowly become a burning torch, which will enable change to start taking place. Change needs to happen so that Dystonia is no longer a condition hiding in the shadows of its neurological brothers. The more awareness there is, the more help sufferers shall get and the more likely it is that a cure shall be found.
I would like to say big thank-you to my family who have put up with disruptions at all times of the day and night, care for me, support me, and keep me strong. I don’t know how I would cope without you all. An especially big thank-you to my mum, who has been my rock and has put up with my tears and frustration, I love you so much!
I want to also say thank-you to all the sufferers who have supported, given me coping tips and kept me sane! Especially Karen, Shannan, Andrea and Pamela – you guys are amazing!
I love this quote, and for me it rings true, I may only be at the beginning of my storm but I am already a stronger person for it. It can be applied to anyone and everyone as we each go through our own ‘storms’ at different times in our lives. The struggles we experience, no matter how big or small they are, change us. They allow us to develop and change so that we are stronger, so that we can carry on with our heads held high, it gives us the knowledge that no matter what life throws at us we can and we will beat it every time.
In life people always ask themselves ‘why me?’ or ‘why now?’, next time you feel like asking those questions stop and breath, understand that those questions will not solve anything. You just need to battle your way through to the other side of the storm. It will be hard, but if you give up, you won’t see the wonders that are waiting for you on the other side.
Life is truly a lottery, some of us soar through life with ease and others battle endlessly. However at the end of the day, what will be will be. All you can do is battle on with the knowledge that you are fighting for a reason, that things will get better, and you will conquer every storm life throws at you.
Over the last week I have not been well. My seizures have increased to the point that one night I seized from 12am till 6am, my body was spasming constantly and I was feeling really under the weather. The last three days I have had a temperature along with a sickness bug, so have spent the days in bed resting. As I have mentioned before Dystonia does not respond well when the body has an infection/bug, for me this means it acts up a lot. I have put this last week of bad spasms and seizures down to my body fighting off the bug and then succumbing to it.
Today whilst reading through some material on the Dystonia Society’s website I came across a section on Dystonic Storms/attacks and it has really got me wondering if my ‘new’ Non Epileptic Seizures are actually not Non Epileptic attacks and Dystonic Storms instead. In my ‘new’ type of seizures I am completely conscious however I am unable to communicate verbally, sometimes I may be able to do this via twitching a finger or blinking my eyelids, other times I am unable to communicate in any form, which is terrifying! The Dystonia Society describe Dystonic Storms as :
“episodes of a rare condition called status dystonicus where people develop frequent and intense episodes of severe generalised dystonia. A single episode of this severe dystonia may be referred to as a ‘ Dystonic storm’ or ‘ Dystonic attack’. They usually occur in individuals who already have dystonia affecting a lot of the body…During an attack people do not lose consciousness and are completely aware of their surroundings but they may not be able to communicate to others as the muscles of the face and larynx are often involved. “
Naturally when I next see my consultant – which shall hopefully be soon – I shall put this to him and get his thoughts on the matter. – if you would like to read more on Dystonic Storms or Dystonia in general then please visit the Dystonia Society’s website http://www.dystonia.org.uk/index.php .
I found this picture earlier on today and it inspired me.
I am not going to have a perfect day everyday, and some days I am going to struggle to find the silver lining. However something good happens everyday, it may a day from hell, but if I woken up that day and I am alive, well that is fantastic and I am going to be grateful for it. There is no point in dwelling on the negatives in life.
So I am going to ignore my spasms and seizures, force my spasming face into a smile and carry on.
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.
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.
This last week, has for me, been full of thoughts to chew on. This week, there has been many programmes on for Stand up to Cancer, all of them heart wrenching yet inspirational.These people have to live with a disease that may or may not kill them, their life is a huge unknown. Yet despite having this devastating illness, having to go through emotionally and physically painful treatment, and so much more, they hold their heads high and they try to live their lives to the fullest. They are truly inspirational.
This weekend particularly, I have thought about them. How much they have to cope with, the pain they must deal with. Over this weekend both my facial and foot spasms have played up. They have been both painful and debilitating. Yet I know that none of the games the dystonia alien plays will cause me any long-lasting harm. They are simply irritating and painful. A nuisance, that I must and will learn to put up with.
I have to count my lucky stars and be thankful. I may have a disease that is currently incurable, that causes pain, embarrassment and is debilitating, but with the right treatment my symptoms could be dramatically improved. My illness will not kill me. It has changed the path I was on but it will make me stronger for it. I have to be thankful for the disease I have. My life could be so much worse.
My quote of the day has to be ‘Pain is inevitable.Suffering is optional’. I find this quote rather fitting. Having dystonia means that every day and every night in full of pain, some days worse than others. However just because I am in pain does not mean I should stop and give up. If anything I embrace the pain, I accept that it is part of me but it does not define me.
Dystonia makes many daily activities like cooking, washing my hair, going for a walk etc. rather hard, but that is no excuse for me to lie in bed all day feeling sorry for myself. Instead it inspires me to get up and go, to think what can I do and then go and do it. I love horse riding, its going to be difficult to do, but I am not going to let pain stop me from giving it a go!
Dystonia causes a hell of a lot of pain. I am going to achieve everyone of my goals despite it!
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