Sorry to have a moan on a Sunday and sorry I have not been around for a while. We got married, went on honeymoon and then now I have gone straight into rehab (a big shock to the system).
I sustained my tbi just over a year on an unfortunate day when I met a shiny Mercedes on my bicycle! We have then spent after my initial stay in hospital a monumental fight with the NHS to get some help, to get me back on my feet. We are still fighting.
I have many problems, although the biggest one is, that I have Myclonic seizures on a daily basis, which are very uncontrolled. I am on Keppra which helped initially, but is not really doing very much at all now. I have never had a formal epilepsy diagnosis. My Myclonic seizures take the form of my right arm flicking repeatedly up and down, my head being shoved to the right and also back and most recently my knees starting to buckle. I also get stuck speech, involuntary speech and sometimes, I cannot speak at all. I do not know whether this is the Myclonics or the tbi. The Myclonics came as a result of the tbi. I suffer like many of us extreme fatigue. I do not know whether this is the medication, tbi or because I have so many seizures. I am complete intolerant to fluroscent lights, too much noise and too much movement. All in all this renders me pretty much housebound. All I want to do is get better and go back to work.
I stay in the house because we can control the environment which helps reduce the severity of my symptoms, but I can't sit here forever.
We have battled with the NHS. I have had some wonderful care, but when the decisions makers arrive it all goes wrong. Long story I won't bore you with today, but it stems to when we made a complaint about one doctor which follows us around. My records have been lost, EEGs have not been reported on. My GP has tried to get my EEGs out of the hospitals by telephone and letter, but they have mysteriously disappeared. We have had second opinions, but as soon as reference is made back to my original treating hospital, the walls go up.
One of the neurologists we last saw shouted at us because we dared to ask questions. He did not report on his EEG. He also said a subdural bleed is nothing to do with the brain. I have also abnormal MRIs etc. We know he was talking rubbish. This particularly so called professional said all the symptoms I experience are pyshcological. Where we agreed some symptoms were physcohological some clearly aren't; the fluroscent lights problems, not all bright light and the fact I have a complete inability to control my temperature and often do not know whether I am hot or cold. He refused to listen to that. My subdural was on my left and most of my involuntary movement is on my right which as my GP says correlates to where I was injured.
We fast forward a few months. I was referred to a neuro physchologists (different hospital form the shouty neurologists). I never saw the neuro physchologists but was referred for an assessment at a neuro rehab unit local to our home.
To our complete amazement they listened to us and within a week I was told I had a place as an inpatient. We had to postpone this as it was only a couple of week before we were due to marry. The unit was happy with this.
I started at the unit last week and am aloud home at weekends. However, I have stuggles. Nothing has happened in the three days I was there. I have never been any where so noisy and they have loads of fluroscent lights. I know I have to go through this, but by the time my husband picked me up on Friday my seizures were so bad, I had to have help to get to the car.
I have gone from being at home where I have lots of support and prompts from my husband to having to fend for myself. On the first morning I only remembered to brush my teeth and take by inhaler at 2.30pm, which resulted in me coughing through the second night because I was late with my inhaler.
They keep trying to make me take the generic brand of Keppra, which I cannot take. I take Keppra because I cannot not tolerate changes in the genric brand. One time you can get one make and another a completely different make which worsened my seizures. I was put on Keppra to ensure continuity. I have had to tell them this five time.
I kid myself when I am in my controlled environment at home that I am ok really, but then I go into the unit and think am I ever going to be better. It makes me really when I go out how bad things are.
My biggest fear though because of my NHS battle that they to are not going to listen and I am not going to get any help. The biggest thing is not knowing what is happening. What I am doing, when I doing it and whether I am going to ever see the end of this. We found the biggest problems because I look "normal" until I start having seizures, speech problems etc, people think I am better. That is all I want to be is better and go back to work and live again.
Any words of wisdom on how to cope with rehab would be gratefully received.
Sorry for a very big, long moaney post, but it helps just to write and get it out.
I will end on a positive though, I have met some great patients in there and I have now been married four weeks to my amazing husband.
Hope you are all ok today.
Thank you for taking the time to read my post X