I spend 99% of my time shut up in my room due to Dystonia. Throughout the months leading up to this summer I was concerned as to how my body was going to react as bright light triggers my eye spasms (I am unable to currently wear my sunglasses or glasses as it causes a facial spasm) and I have to be careful in the sunlight as my antibiotics for suspected Lyme Disease causes light sensitivity. I had been thinking for a while now that I was just going to have accept that I would be having to spend the whole of the summer indoors.
It turns out I need not have been so pessimistic. This week I have been out in the garden several times with my family, family friends and had two BBQ’s. I was overjoyed to be out socializing with our family friends. We made sure I was in the shade so that both my body and eyes were protected. It was perfect and I had such a great time.
This achievement has left me thrilled as it has reassured me that I can enjoy this summer and the summers to come without worry. I only have to be a bit careful and that’s not much of an issue. Being out in the warmth and socializing has really lifted my spirits and left me feeling overjoyed and calm.
I look forward to seeing what the rest of the summer has in store.
Over the last couple of days I have not felt to great and my spasms have been awful. I have found myself going from being boiling hot one moment to shaking with cold the next, along with some interesting spasms. My legs latest trick is to spasm so that the leg is completely back to front, which is not a comfortable position to be in. I am going to try and get my mum to capture a picture of it the next time it happens.
Thankfully today I am feeling slightly more like myself and my spasms have been less extreme. I don’t know if the antibiotics that I am on as a trial for possible Lyme Disease caused the increase in spasms or if I was just under the weather.
I am still waiting to hear from my consultant in regards to being admitted for a week so that I can get some help. We last heard from him on around the 15th April and despite us sending him several emails and chasing his secretary we have heard nothing. When ever I have an appointment with my consultant he seems great, however I am getting more and more frustrated with the lack of help I am getting! Everything that was being arranged for me seems to be not quiet what he gave me the impression it would be. Last October he put me on the waiting list for an inpatient intensive therapy program, and told me that the waiting list for the program was about a year long. However I had an appointment up at the hospital the other day where I was interviewed by two members of staff who will at some point decide IF they are going to admit me to the ward or not. IF I do get admitted it will not be until around June 2014.
I struggle to believe that there is no other help out there that could be put in place for me now. I understand that hospital wards are busy, however surly there must somewhere be at least an outpatient Neuro Physiotherapy service that I could be referred to This is going to be something I will discuss with him when I eventually get to see him. I am hoping that I will at least have an outpatient appointment with him soon as I am in need of my Botox injections for my jaw and neck to be redone.
Until my consultant sorts everything out I am going to keep my fingers crossed that Lyme Disease is what has caused this mess, as at least then I know the cause and that is one thing I can stop worrying about.