injections – Page 2 – Dystonia and Me

Lasts Nights Fight With My Jaw

Posted on December 31, 2012February 24, 2022 by dystoniaandme

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.

Archive, December

My Dystonia and My Dystonia Experiment

Posted on December 30, 2012February 24, 2022 by dystoniaandme

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.

September

I can smile!

Posted on September 22, 2012February 24, 2022 by dystoniaandme

For the first time since July 22nd I can smile! It takes a bit of effort due to all the botoux but I don’t care!!!

The operation so far is looking like a success! No pain, I can open my mouth, I can chew, my lips are still a tiny bit wonky but I don’t care, it can take a few days to see the full results of the botoux. Having no pain in my face, is the most amazing feeling! Now when my face decides to spasm, its is only my eyes, mouth and nose that spasm, my cheeks stay blissfully still!

I feel so lucky to have been treated by a surgeon who actually understands what Dystonia is, who listens to what you have to say and cares and likes to put some extra amount of botoux in as he finds it has better results!

So little dystonia alien, I feel like that’s another point to me… I’m catching up.

🙂