Tag: NHS

Posted in Archive, December

My Dystonia and My Dystonia Experiment

Posted on 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.

 

Posted in Archive, December

Dystonia Update, Consultant Musings, + More!

Posted on by dystoniaandme

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!!

 

Posted in Archive, December

Musings on my Dystonia and the NHS

Posted on by dystoniaandme

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.

 

Posted in Archive, november

Occupational Therapist :-)

Posted on by dystoniaandme

Well after arguing with countless people down the phone and battling with the NHS I am finally getting some help. Yesterday I had a visit from a rather lovely Occupational Therapist, who had seen Dystonia patients before. I was quiet happy she had chosen to come yesterday as  the dystonia alien had decided that I was not allowed to walk,move my fingers or see. She therefore witnessed my leg spasms cause me to fall, then my struggle to get up, she saw how often I would go blind, and how painful the whole thing was. This meant she could see just how much Dystonia affected my life and how much I struggled with doing the most basic things for myself.

She was extremely understanding and was quick to put forwards ideas that would help me in the house and with getting out the house. It was nice to have someone listen to me, who understood my condition, and really wanted to help make my life a little bit easier.

Posted in October

Waiting Lists

Posted on by dystoniaandme

In the post today I had a follow up letter from my neurologist. He is still hoping to get me admitted into my local hospital for treatment, however if the hospital does not want to take me on, he will put on the waiting list to be admitted into the National hospital for Neurology. The waiting list for the National is a year long.

I am in two minds over this. It would be easier for me to be in my local hospital, as it would mean quicker treatment, my family and friends would be able to visit easier, and its an environment that I know well. However if I was admitted into the National I would be on a ward that has treated many people like me, which gives me confidence in their treatment plan, and there is a chance that even if I have treatment at my local hospital, I will end up at the National hospital anyway, so maybe going there first would make sense.

I know that at the end of the day treatment is treatment, and I am so lucky to have seen such an understanding and helpful consultant. However waiting a whole year for treatment scares me, so with that in mind going into my local hospital is very appealing. After all how much more could go wrong in that time? But then again, nothing else may go wrong! On the other hand even if I have treatment at my local hospital, I may still have to wait to be admitted into the National. I know that at the end of the day that I will be happy just to get treatment, but the unknown over which waiting list is shorter is slightly scary.

Posted in September

Fingers crossed

Posted on by dystoniaandme

After months of battling with the NHS I have finally received a date for an appointment with a neurologist up in London who specialises in movement disorders such as Dystonia. Im trying not to get my hopes to high as I have met many doctors who just are not able to treat me, but I am hopeful that this doctor shall 🙂 

Finally feel like I am heading in the right direction finally.