Recently after seeing my neurologist a decision was made for me come off of the majority of my medications. It is not a decision that either of us made lightly but there was little choice in the matter. For the last four years, I have been completely reliant on a cocktail of medications and injections to simply make my day to day life manageable. It has taken years to find the right combination of medication and injection frequency, so taking a step away from all of this had been extremely frightening; I had no idea how my body would react or how I would cope. Whilst there was every possibility that in actual fact I would manage perfectly well, I was also painful aware of my medical history, of the years spent with weekly ambulance trips to the resus department. This is not something I ever want to repeat.
At first I was managing fine, the emotional ups and down that come with weaning yourself off of medication was nowhere near as bad as I had expected, and I had managed longer than 6 weeks without botox; which is frankly a miracle. However, over the last two weeks or so I started to worry, I put my symptoms down to an ongoing cold I’ve had for the last month. There was a familiar tugging sensation in my jaw, my eyes were slightly more aggravated than usual, and I was experiencing ‘violent shivers’. Before I was diagnosed in 2012, I always called my arm twitches ‘violent shivers’, it was my way of convincing myself there was nothing wrong. It’s funny how easy it is to fall back into bad habits.
This weekend my jaw has been particularly bad; it was deviating dramatically and starting to tremor. My only medication option was codeine, which left me feeling slightly spaced out but did nothing for the pain I was in. Since then my body has gone dramatically downhill. Last night my jaw spasmed, violent tremors followed, dislocations occurred and then my arm spasms joined in. I had forgotten how much pain all of this can inflict.
last nights dystonic antics
After very little sleep and being no better this morning I arrived at my emergency doctors in the hope they could suggest anything to help. I generally judge how bad I am by the Drs reaction; she was appalled I had ended up in the state I am in and was lost as what to do. So now on her instructions I am curled up in bed encase I have a seizure, I have emailed my neurologist in the hope he may contact me sooner rather than later, and I’m waiting for her to phone me back with an action plan. She had been debating trying to admit me in to hospital, and as much as I have my concerns with my local hospital due to previous experiences, I cannot help but feel that this is this best place for me as I can no longer eat and I haven’t successful managed a sip of water since early this morning.
apparently I don’t need a working face
Fingers crossed things improve soon.
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!
Today I decided to have a nice long hot bath, as I felt like I had been run over by a truck repeatedly . After managing to bottom bump up the stairs, it was heavenly to be able to relax in the bath. I cannot describe how blissful it was to let my muscles relax in the heat. However it turned out that the relaxation was not to last. Without thinking I poured the shower gel onto my right hand. Immediately my right hand and arm went into a rather painful spasm.
This was rather disappointing, as for the last few weeks my arm and hand have actually behaved rather well (as long as I am not cold), and I had reached a stage where I was not to worried about it if I was indoors. The only reason for my arm and hand going into spasm, which I can think of, is that the coldness of the shower gel on my hand, in comparison to the heat of the bath, set of the Dystonic reaction.
This seemed to then set the tone for the rest of the day. I attempted to get on with the day and relax, however my little Dystonia alien seemed to have other ideas. My leg over the whole day has played up, so I have tried to avoid using it as much as possible. During dinner my arm and hand again went into spasm, after I attempted to pick up my spoon with my right hand. This spasm then went on to last a good 40 or so minutes before relaxing.
However I am trying to think positively as this is the first time in awhile that my right arm and hand have played up. This is a reassuring thought, so I am not panicking to much. Today has reminded me that I cannot take the days when bits of my body behave for granted! I need to value each day of peace, as there is no way of knowing what will happen one day to the next!