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

Posts tagged ‘Handedness’

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!

 

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Benedict’s Obstacle Course.

 Imagine this: You wake up in the morning, your eyelids open but you can see nothing due to a spasm pulling your eyes back. You massarge around your eyes blinking violently, trying to beat the first obstacle of the day. Suddenly your sight is back! You celebrate silently, not wanting Benedict to realise you have won, in-case he wants to take revenge. Next you decide to dress quickly before he wakes up and realises what you are doing. You have your top half done, and one leg in your jeans, when suddenly Benedict strikes! Your right leg contorts, as if it’s trying to physically turn backwards, meanwhile your foot has turned under and is dragging along the floor. You stop, take a deep breath, and then start attacking your own leg. Desperately trying to get your jeans over it.

Bang! Your hurried attempts have caused you to fall backwards on to your bed. However you keep on wrestling with your leg until finally you have won. You are officially dressed. You look in the mirror, do you dare attempt to tame your hair and do your make up? With a quick glance at the clock, you decide to attempt to do it. Nervously you brush through your hair, and quickly put it up in a simple pony tail. Relief sweeps through your body. Now on to the make up. Your doing well, almost done. Then, suddenly, pain sears through your eye. Your right hand, which is holding the mascara brush, has spasmed, causing the brush to go straight into your eye.

It has now been two hours since you got up. You have finally managed to get dressed, with hair and most your make up done. Now you need to get through to the living room, so you can grab your bag. Splinting your right hand up first, so as to contain any more unwanted spasms, you slip your arms through your crutches and hop out your room into the hall way. You glance down at the shoes and bags scattered around on the floor like a minefield, and hop around them. Careful not to misplace a crutch or slip.

Now you have reached the penultimate hurdle. You squeeze yourself past the sofa and clothes horse into the living room. Reaching down you pick up your handbag, and swing it over your shoulder. You give yourself a satisfactory smile. You are beating Benedict’s obstacle course so far. You start hopping forwards. You go to squeeze back through the gab between the sofa and the clothes horse…when your right knee collides with the end of the sofa. The knock immediately triggers a spasm. Your leg is twisting side ways and upwards. Pain is taking over. Your balance is now lost. You haphazardly try to place your crutches in a position that will stabilise you. It is a losing battle. You fall backwards onto the other sofa that is just behind you.

After the spasm has calmed down, you decide to take on the final hurdle. This time you choose to leave the crutches behind. Hoping that it will enable you to pass through the dangerous gap between the sofa and clothes horse with ease. You jump up onto your good leg. Keeping your right one off the floor, bent slightly. With arms whirling round widely to prevent you from falling, you hop successfully past the sofa and back into the hallway. You have finally reached the front door! You do not have much further to go. You link your arm round a family member for support and hop out the door. In front of you lies three large steps. Each one looks like a mountain. It fills you with dread. Half of you wants to turn back around, go back to bed and claim defeat. However you hold your ground and preserver, refusing to give in to the evil Dystonia alien, Benedict. You bend your good knee, and cling to the railing with your working/free arm and hop up the huge steps.

You have finally reached your goal. You have reached the car that is waiting to take you to your doctor’s appointment. For the mean time, you have beaten Benedict the Dystonia alien.

Welcome to my life!

 

Benedict comes out to play!

Today Benedict (the dystonia alien) decided to really wake up and came out to play. I was happily curled up with my youngest sister watching the 8th Harry Potter film, and all of a sudden my index finger on my right hand started to tremor. This gradually progressed to the rest of my fingers and within a few minutes my whole hand was shaking. I laughed it off, not wanting to worry my sister, and carried on watching the film, trying to ignore my hand. It eventually stopped shaking.

For the next few hours it behaved rather well and I relaxed and forgot about it. However when my mum held my hand to help pull me up, later in the evening, it instantly went into spasm and the tremor returned. Again this seemed to last a fair while. Consequently I have decided to put my splint back on my hand and refrain from using it as much as possible until my little Dystonia alien has decided to settle back down.

I am trying to stay positive and not let the issues with my hand and leg get to me. Tomorrow I have my riding for the disabled lesson at my local stable, and I don’t plan on letting my Dystonia alien stop me from getting on the horse!  I know it will make mounting even more difficult and I know my body will be bad afterwards but riding makes it worth it!!!I cannot wait for tomorrows lesson!

 

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