Posted in Archive, February

Benedict, Dystonia, Rugby & Wine

This morning  pain has slowly been spreading down from my TMJ area into my jaw. I had done my best to ignore the pain, distracting myself with getting things ready for tomorrows hospital appointment (a non dystonia related one). However the lack of attention I was paying, seems to have seriously offended Benedict. To punish me, he has chosen the most painful part of me and decided to twist and pull it in as many ways as he can possibly find.

The right side of my face/lips has been pulled diagonally upwards and outwards. Consequently my right eye has been forced shut and it look like I am trying to bear half of my teeth. I must admit, if I was trying to scare someone away by bearing my teeth this spasm would do a very good job. The left half of my face/lips has been pulled diagonally downwards, and the whole of my jaw has been shoved to the left as well. I feel like my face is going to rip in two and my jaw is going to dislocate!! It is disappointing that despite having Botox not that long ago, Benedict is already able to manipulate my jaw. I have at least 4 weeks to go, if not more, before I can have any-more Botox injected.

Having Dystonia in any part of you body is a horrific thing. However now, in this moment of time, I would rather have my hand or my foot go into spasm. Whilst they are still ridiculously painful, I find them a hell of a lot easier to deal with. With the way Benedict seems to be playing with me today, I am sure that he will find some twisted way to add my wish to today’s neurological games.

I am refusing to let this spasm get the best of me though! I am going to enjoy today’s rugby match – Come on Scotland – I am going to have a nice glass of wine or Disaronno, even if I have to drink it through a straw, and I am going to relax. I am hoping that my pain medications kick in soon! Before I do anything else today I am going to meditate, as I often find this to be a very helpful way to help keep myself calm and to put off any unwelcome seizure.

 

 

Posted in Archive, February

Late Night Antics

Yesterday my body was seemingly well-behaved. The only time it got irritated was when I went out for an hour or so, and my foot really did not want to be put in my shoe, and my eyes went blind a few times due to the lighting. However all in all, I found this to be an extremely positive and promising day.

As I was still feeling shattered after the busy week I had had, I decided it would be best to go to bed early. Meaning that when I went to bed, I would actually go to sleep and not pick up Harry Potter (I am rereading the series for what must be the 40th time) and read for hours. My little Dystonia alien, Benedict, however had other plans for me. I was just beginning to drift off to sleep when I felt the familiar tightening sensation in my leg and foot. I decided to ignore this and carried on trying to get to sleep. Benedict, unhappy that he had not managed to grab my attention, then decided to bend my foot as far back as it could possibly go. This roused me, however I tried to stay calm, and implemented my breathing exercises from my meditation CD. My leg then started doing two rather painful movements. It seemed to be trying to rotate so it was completely back to front, whilst going slightly upwards and pulling outwards, as if trying to go in the air whilst attempting to dislocate itself. This completely woke me up, with all hope of sleep gone,  I flipped myself over, so that I was lying on my stomach, to try to counteract the spasm by forcing it into the mattress.  I then started doing distraction techniques, such as making my good leg do movements, reciting lyrics in my head etc. In the end I switched on my Ipod, and just focused on my breathing. I did this to not only to keep me calm, but also to try and lull my body into a state of relaxation.

It was 3 am by the time the spasms relaxed, it only took 5 long hours, and I was finally allowed to drift off to sleep. Whilst this was an irritating experience, as I like and need my sleep, it was also a positive one. I manage to cope with it all without panicking. I kept calm, and did all the distraction techniques I knew, and tried each one for a fair amount of time, before allowing myself to give in and just let the spasm run its course.

Today has been a fairly good day. My Dystonia had not been that bad, so I am rather happy. I did not have my usual soup for dinner today as I am trying to up my protein intake, so I had mashed up fish fingers, mashed potato and beans instead. Whilst this was nice and extremely filling, it sadly set my jaw off. Recently when my jaw spasms, it has just been my lips going – thanks to the Botox treatment. However this evening my jaw also deviated to the left when it went into spasm. Thankfully the deviation was nowhere near as extreme as it has been before. I am hoping that this deviation is a fluke, as my last lot of Botox treatment was only administered about 5 weeks ago, so I still have 7 more weeks to go before I can have any more.

I am hoping for a quiet and relaxed day tomorrow. Which will be full of positivity!

 

Posted in Archive, February

Benedict’s revenge

I have had a rather busy and sociable week. It has been completely brilliant and was a slight taste of ‘normality’ for me. Normality and independence are something that I desperately cling to, as I refuse to give in to Benedict’s attempts to seize control and conquer my body. However, when you have Dystonia a busy day is enough to exhaust you, so a busy week was perhaps a step to far. I still think this week was so worth the last few days of Dystonic  antics though!

Benedict, my little unwelcome Dystonia alien, decided to start playing up on Friday night. My right hand/arm had gone into a spasm, and started to tremor, my head also had a tremor going on that looked like I was shaking my head to say no very fast, and my back decided to bend backwards, in an attempt to fold me in half. As you can imagine this was extremely painful and rather distressing.

Then last night my leg decided to spasm. Now normally I can just about control my emotions when my Dystonia plays up. Usually it is only a few choice colourful words that escape beyond my spasming lips. However this particular leg spasm was agony, and had me in floods of tears due to the pain. Then my arm decided to join in. By this point I was extremely upset, and rather angry at myself for giving in and letting out my emotional response to the spasm. Yet they do say that a cry now and then is healthy, so perhaps I actually did myself a favour.

Today was also eventful. Even though the day was relaxed, we just sat quietly at home, as my grandparents and my man were visiting, my body still deemed it necessary to act up. I can only presume that the many activities I have done this week had triggered the hideous spasms I have experienced over the last 48-72 hours. I woke up at 5:30 am this morning to my arm spasming and my head doing its no no tremor. Then my leg put up a big fuss when I attempted to get dressed. Through-out today my arm/hand has been having spasms and tremors often and violently. At one point I honestly though that if the spasm carried on for much longer then my shoulder would end up dislocated – thankfully it eventually ceased. At other moments in time the tremor in my arm was so violent that I ended up hitting me sister.

I have currently given in to the spasms and pain, and retreated to the quietness of my room. However I have not come here to dwell on the problematic issues that Dystonia causes. I have returned to my room, to relish in the memories of the week, to mentally high five myself for the accomplishments I have made and to look forward to the days ahead. I cannot wait for tomorrow afternoon to have a consultation with a personal trainer that I hope to work with. The beauty of having Dystonia is that you know that even on bad days that things can only get better! There is so much to look forward to!!!!

Posted in Archive, February

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!