At this very moment in time, I feel like my body spent the whole of last night trying to get back at me for writing a positive post yesterday. I had spent the whole of yesterday feeling rather odd, like half my brain was missing and the other half was covered in fog. By the evening my jaw was really playing up, with my dystonia pulling each side of my face in opposite directions, which was agony, this of course then led on to hours of Non Epileptic Seizures. Consequently I have woken up this morning feeling like my body has been run over by a bulldozer and my head been repeatedly hit by a hammer. However on the bright side of things, today my jaw Dystonia is a lot better than yesterday.
I have decided that today I shall completely avoid solid food and only consume softer food such as soup or yoghurt, in an attempt to try and prevent my Jaw from playing up so much, as I really want to be able to enjoy tonight’s New Years Party.
Tomorrow I plan on writing a letter to my consultant, to ask for a date for him to administer my injections and to ask for a plan to be put in place for future injections to be administered. I am hopeful that I shall not have to wait to much longer for these injections, considering he was meant to do them several weeks ago, but failed to give us a date.
I am hoping that the New Year shall be filled with positivity and improvement.
I am happy to announce that over the Christmas period my Dystonia behaved, with the exception of one or two moments. The relief I felt after going Christmas day and my birthday without having my dystonia play up was immense! I had worried a lot about spending the Christmas period in agony, thank fully I ended up worrying for nothing. To make things even better I even managed to spend 6 hours clothes shopping with my family, with only my eyes playing up now and then. I managed to get in and out of my wheelchair frequently so I could try clothes on without my leg making to much of a fuss. By the end of the day, I was exhausted and found it very difficult to move around, but this did not bother me as the fact I managed to spend so long out and about and try clothes on was a major achievement for me!
Yesterday I picked up my glasses from the opticians, this means that I can now start judging whether it is my eyes straining that causes my eyes to spasm and go blind. Every day, I am going to keep a diary of what activities I have done and how my eyes have reacted to each activity, this will enable me to have a fairly accurate idea (after a number of weeks) as to whether my theory to why I go blind is right or not. I am quiet excited, as if I am right and wearing glasses helps stop the spasms, this will make a significant impact on my life.
My jaw dystonia is really playing up at the moment, which in turn brings on my Non Epileptic Seizures. Despite my consultant emailing me 3 weeks ago saying he would do my Botox injections next week, I have still not received a date for it to be done. When I finally get to see him and have the injections done, I am going to ask him if there is anyway we can just book a date in advance, for around the time the injections stop working, to have treatment again. To me this is a logical step to make, however it is becoming more and more apparent to me that the NHS system is not necessarily a logical one.
I hope you all had a fantastic Christmas and that you all have a great new year.
With the exception of the last few days, the last few weeks my body (apart from my jaw) has not been too bad. Which has been a very nice break for me, but has also lulled me into a false sense of security. When my foot went into spasm the other evening I was rather shocked. That day my whole leg had felt odd, like someone was trying to pull it out of its socket. I found myself to be rather upset by the spasm. Part of me had hoped that I would have a miracle recovery and I would return to uni in September without a worry. Now I know this whole miracle recovery idea was a bit silly, after all Dystonia is not known for being predictable, it does what it wants, when it wants, how it wants, for as long as it wants. However there is still hope for Uni, I have ten months to somehow get better/get my dystonia under control in, so I am remaining hopeful. I have thrown myself into studying/revision, as I think that it is the only thing keeping me sane at the moment.
Last Sunday, my consultant finally replied to our email stating that he would administer Botox injections into my jaw for me, and that he would do that next week. This created some confusion about when he would do it. However a whole week has passed since we heard from him, so that rules out that week. So it shall be interesting to see whether he contacts us to do the injections this week or if we shall have to chase him some more.
In January I am going to meet my local MP, to discuss with him the many pitfalls of the NHS. I have composed a long list of points, that I wish to discuss, over the last few months. I am looking forward to how he shall respond to my questions or if he shall try defend the system.
I am looking forward to celebrating Christmas and my 20th with my family. I am praying that it shall be a happy occasion with no Dystonic movements and be Seizure free.
I hope you all have a Merry Christmas and a Fantastic New Year!!
My mother posted the photo below on my Facebook wall the other day. The words I find ring so true to me! I dream of being a midwife, and because I have experienced what the life would be like, I dream of it even more. So I will keep on fighting my dystonia, I shall push my body further each day, until my brain understands what it is meant to do! Its going to be hard, and I know that I am going to have good days and bad days, but next September I will return to uni and recommence my midwifery training! It may be hard to get there but that wont stop me!
So today my head it full of things bouncing off each other. I had a theory that I touched on briefly post or two ago that I have now put into action. Today I went to specsavers to get my eyes tested, as I was convinced my last eye prescription was wrong, my thoughts was right. My eyes often feel like there being strained and I find it hard to focus on words or the TV etc. as it really hurts my eyes. This, I think, is why my eyes then spasm upwards and go blind. Therefore today when I purchased my new glasses I also had a tint put on them and anti-glare (the Optician felt it was necessary, and would help my eyes a lot). If my theory is right then this should completely stop my blindness. I am hoping that my theory is right!
I would love to talk to my consultant about this theory and all the amazing improvements I am making at the moment, so that he is kept up to date and could offer his own thoughts and advice. Somehow though I don’t think this will happen any time soon, especially as the urgent email (he told us to email him if we needed him) we sent him 4 weeks ago has still gone unanswered, despite phoning his secretary to chase it each week. This I find slightly odd as when I was not his patient he answered our emails the very next day. I shall just wait/chase them some more and see what happens.
I am still mega excited about the prospect of returning to uni in September! I am still improving a little bit more ever day, which I am taking as a positive sign. Therefore I have completely thrown myself back into studying/revising the topics we did at uni. I just cannot wait to be back there!
Today I had a fantastic conversation with my university, they have decided to give me an extension on my sick leave until next September. They are going to call me again in February to see if my condition has improved.
This has given me so much hope! My dreams of being a midwife are not over! I have just got to continually push my brain/body in an attempt to make a recovery. I am hoping that I shall get there! Time to start revising everything I had already learned as well to refresh my memory!
Today is one of those days where I find myself thinking about everything. The other day I had to inform my university that I would not be able to return to my midwifery training because of my Dystonia. I still have to speak to them a bit more about it in the next few days. Yet sitting here right now, my body is completely behaving, I feel normal. I feel like I am able to just get up and walk about and do what ever I want. Part of me even dares to say you’re fine. However I know I am not fine, yesterday evening I went blind three times, my jaw was in spasm and my body was very jerky. I know that the reality is that I am not fine or ‘normal’, but my body at this very moment in time feels like I am.
A large part of me wants to just get up and walk about and see what happens, I know that there is a huge chance that my right leg shall immediately play up and I will end up on the floor, but then again if I don’t try these sort of things out, how will I ever know what I can and cannot do, or what progress I may have made.
My consultant, when I first met him, gave me the impression he was wonderful and would fix me. The reality of it has finally sunk in, unless you’re sitting in front of a consultant or doctor the chances are that unless you fight them they will do bugger all for you. The way I see it right now is that I have two choices, I could spend my days feeling sorry for myself and waiting until October/ November next year to get treatment or I could start pushing my body a little bit further everyday and start trying to retrain my brain myself.
Over the last few weeks I have tried to push myself, so far it has been successful 98% of the time. I can now use my right hand to hold a spoon, I can stand with my right foot flat for about a minute or two which is a huge step. I am making what I think are huge positive step forwards and that is without the help of doctors or consultants, the people who should be helping me! I have also noticed that I tend to go blind when I feel like my eyes are straining, the obvious solution to this in my mind, is to go to the options and get some new glasses, so my eyes don’t have to strain so much, after all there is no harm in trying and it may stop the blindness.
What irritates me the most is that I am having to struggle through this and try to figure out how to beat Dystonia with very little help from the medical profession. They are the people who should be giving me ideas of how to help myself, or new things to try etc, yet their not doing any of this, I am lucky if they even return my calls or emails. The care the NHS provides shocks me constantly, I feel completely abandoned by them. However I will not settle for this level of care. I plan on doing my best to bringing attention to the failings of the NHS system.
The last few days have been full of positivity! Which has put a smile back on my face. The other day I paid my local riding stable a visit. Once a week for a couple of hours they run lessons for the disabled. They assessed me whilst I was there and have said that after Christmas I can join! I was of course extremely excited. I then watched one of the RDA lessons, so I could get a feel for how the lessons were run, I had a smile across my face the whole time. I love horse riding! The only issue that the instructors can see at the moment, is getting me on the horse without my leg going into spasm, however they have thought of a couple of different ways to get on me. Personally I’m hoping that my sheer determination to back on a horse will enable me to do it perfectly :p.
Yesterday my jaw spasm relaxed partially!!! It had relaxed enough for me to eat solid food and talk more clearly, only my lip remained odd. In the evening I had my usual extreme Jaw spasms and seizures, which had worried me that I would wake up today with my jaw back in spasm, but I need not have worried, today it is still relaxed. I could dance with happiness!
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