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

Posts tagged ‘crutches’

Benedict Blindness

I had been worried about how my body was going to cope with college and the added stimulation. Thursday and Friday at college went perfectly with only minor hiccups, ¬†which led me into a false sense of security. In typical Benedict style I was shown reality yesterday. As I was feeling pretty good and only a bit tired – I should have seen¬†this as a warning sign – I decided to go with some of my family to a friend’s house warming party. It started off fine, I was enjoying myself, and even indulged in a cheeky Gin and Tonic. However soon the tiredness really hit, again this should have set of the warning lights but I ignored it and carried on chatting.

My eyes spasms, the ones that cause me to go blind due to the eyeballs being pulled up and back, started. At first they were not too long, but they kept happening and started causing seizures. Leaving at this point was not an option as my brain had disconnected from my legs, leaving me functionally paralysed.

Then it all calmed down. I thought my little alien had gone back to sleep. It turned out to be the calm before the storm. I went blind again, and this time my eyes didn’t seem to be coming back, I tried sensory tricks which failed, I even started hoping I would have a seizure as that would normally bring them back yet I was staying unusually conscious. This began to make me nervous, I was in a new environment, surrounded by lots of people who I didn’t know (they were however all very lovely and helpful), and this spasm was becoming unusually long.

The longest this particular spasm has ever lasted is 15 hours, and after an hour of being blind I began to panic that the same thing was going to happen. When I get nervous I talk…a lot, which my poor mother had to put up with. After taking some Diazepam my legs came back however I still remained blind. In the end we decided that the best thing to do was to try to get me out the house and to the car whilst I was blind and then judge what to do when we got home. Getting out of the house however was the tricky part. I had to, using my crutches and splints, walk out and down two small steps, then up two steps and then transfer back to my wheelchair. Doing this whilst I am able to see is hard enough, so doing it blind was going to be difficult. With the help of my parents and some lovely people I got down the first two steps and up one, it was at this point – just one step away from my wheelchair that I had a seizure.

I am so thankful for all the people that were around me, caught me, and helped me. If they all had not caught me I would have without a doubt woken up in A&E hooked up to IV pain relief. Between them all they managed to get me into my wheelchair, and then waited around until the space between my seizures was long enough to transfer me into the car. Thankfully, once we managed to get me home and got some Oramorph into me, my seizures calmed down and my eyes started to stay in place!

After a chat with my mum, we have agreed I am not allowed to go out/do much at the weekends for the first half term of college, so that my brain can adapt to the added stimulation and learn to cope with it. This way I can stay safe and realistically it will eventually enable me to do more.

I have to learn to take baby steps before trying to run. I’ll remember this one day. On the positive side at least I could see for some of the house-warming and had a good time!

 

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Leg Splint :-D

Leg Splint :-D

Yesterday I visited my local hospital to receive my leg splint from the Orthotic Department. We are hoping that the leg splint shall contain the spasms and enable me to rely on the wheelchair less.

The experiment begins ūüôā

 

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!

 

The battle for my leg

Yesterday the little dystonia alien decided it was bored of manipulating my face, arm and hand. It decided it needed yet another toy. It chose my leg! For a long time now my leg has not been completely normal, every now and then it would over bend or I would get odd sensations running up and down it. I choose to ignore these niggles and put it down to issues I had had previously with my leg. However the last 4 or 5 days these niggles had got more frequent and were more noticeable, I decided that now was the time to speak up and express my concerns. So off we went to the doctors and yet another medicine was added to my cocktail of drugs, in attempt to try and lessen the dystonia aliens effects.

Yesterday the alien decided to up its game again. Instead of causing the usual niggles, it decided to cause a painful spasm that twisted my foot inwards and curled my toes up, then it decided to shake violently. The alien decided to do this each time I attempted to walk. In the end I could just about walk on the tips of my toes, however sometimes this set the alien off as well. So I spent the day hopping around, trying to get on with the day as usual and attempting to distract my self. However when I got up to try and walk today, I decided to try and walk normally, hoping that the spasm would not return. But after taking two steps the alien decided to play games, the spasms once again twisted my foot inwards at a bent angle and curled my toes up before shaking violently.

Due to the little dystonia alien also affecting my right arm and hand, I cannot even walk with a crutch, as holding a crutch would set off the spasm in that hand and arm. Therefore I have had to resort to using a wheelchair for getting out and about. Its not a ideal option but for the time being its a realistic one. I went out shopping with my parents to get a few bits today in my wheelchair. At first I was bit anxious, I knew that now more than ever I would be stared at. However once again I found that the stares just reassured me that I could do this, that I didn’t mind. After all, if it was the other way round I would most likely also be just as rude and look.

I feel so thankful for the support and love I get from my family and friends. Without them it would  be a much harder battle with dystonia. With their love, help and support, I am able to get on with daily life and be happy. I know that no matter how hard things get, they will always be there for me. I am so thankful for them!

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