I am now on the final countdown until Tuesday when I have an appointment up in London with my Neurologist. Over the last few days I have gathered lots of different information so that I will be able to present a concise, confident and convincing argument to him. I do plan on letting him administer my Botox injections first though before getting into any debates with him!
I have a number of issues that I need to discuss with him. The first being the timing of the injections. When I see him on Tuesday I will be 6/7 weeks over due for my injections, this is ridiculous especially as the spasm and tremor in my jaw is actually now loosening my teeth! He has always insisted that the best and quickest way to get an appointment is by emailing him, however the recent months have proved this method to be useless so I shall not be leaving the hospital without an appointment.
Another issue I would like to discuss with him is Lyme Disease treatment. I am currently on oral antibiotics, however for late stage neurological Lyme Disease a mixture of different high dose IV antibiotics is needed. I asked my GP about this the other day but he wants me to get my consultants approval for the go ahead first. I am not sure how likely I am to get it, but I am going to try my best and will not give up easily.
I feel this appointment will decide if I shall stay under his care or not. As much as when I am with him I love him and have confidence in him, since April he has let me down. He has dangled hope in front of me and then never come through on his offer. I know this is not deliberate but at the end of the day I need to be under a consultant who can provide me with the treatment I need at the correct time and who will stay true to what he says.
I am very much looking forward to Tuesday though as I will finally get my very much needed Botox treatment for my Oromandibular Dystonia and my Cervical (neck) Dystonia.
There is currently no known cure for Dystonia, patients are expected to accept this. Sufferers live in the knowledge that this is what their life will be like and they will just have to learn to get on with it. But why should we have to just accept it? I understand that acceptance is necessary to deal with this condition. Yet the way this acceptance is done is so negative! Why should we have to think oh great, this is it? Instead we should be thinking, Ok, so this is what I have, but science is always moving forward, you never know, they might find a cure sooner or later.
In my mind I am confident that I won’t always be this way, I remain hopefully that there will be a cure. It may not be for 10 or 20 years, but there will be a cure. They are already finding medicines and procedures that can help with dystonia, so they are already on the path to discover the cure. Without hope and confidence, a life with dystonia would be rather depressing! We should put faith in the scientists and researchers to keep on looking until they get the answer.
After all there is ALWAYS hope!!
This evening I read a quote that put a massive grin on my face- ‘Try to be like the turtle…at ease in your own shell‘. Such simple words lifted my spirits right up. For me at this current moment in time they ring true. The way I look now is not what I would call me. The dystonia alien controls how my face looks and what position my arm and leg take on. However I need to accept for now this is part of me. No matter how I look, I need to learn to be confident in myself because at the end of the day I am me. It is my personality that counts not my appearance.
Will they notice? Will they point and laugh? Will they stare? These are just a few of the questions that have run through my mind since the Dystonia came. But the biggest question of all in my mind was how would I cope with the reactions of total strangers.
So I would like to thank the woman in Tesco who walked slowly past me staring. For now I know the answer, It does not bother me. The whole incident has completely filled me with confidence, I no longer dread being seen in public. Anyone who decides to stare now, I will simply ask them what they want to know? To some my response may seem rude but to me people may at least know what they staring at.