Tag: National Health Service

Posted in Archive, January

Wibbly Wobbly leg

Posted on by dystoniaandme

Since my last post my ability to move around has deteriorated rapidly! The shake/tremor in leg has become extremely violent and my leg feels like its made of jelly. The force of the tremor physically shakes the upper parts of my body as I try to hobble about. I have never had a sense of balance, so you can imagine how hard I am finding it to stay upright, when my leg is shaking me to the point that I would fall if I was not being held up. This tremor has made my knee extremely painful, the other night the pain was so excruciating that I ended up having a Non Epileptic Seizure.

I am trying to work out whether this tremor is a new development to my leg or if it is a development of a Dystonic movement that was already happening. You see, often when my leg goes into spasm, as the spasm is about to go, my right leg would shake like mad. The way I always thought of it was that my leg was shaking away the spasm, this sounds silly but it was a comforting thought, these tremors would last from to seconds to a good couple of minutes. I think it is likely that this new issue is simply a development of the previous tremor, as Dystonic movements do develop (get worse).

However this creates a whole new ball game. I know that with Dystonia, you cannot really forward think, as you never know what will happen from one day to the next. Nevertheless I find myself having to think forward, as I like to have some sort of plan in place. After speaking to someone with similar leg problems to myself and hearing what they do to manage their symptoms, I have had an idea which I would like to discuss with my doctor. I want to put across to him the idea of getting a knee or leg brace. I have previously used a splint for my hand spasms and I found this very helpful in containing the spasms and most of the time it prevented the spasms from getting too extreme. As this worked well for my hand, I think it would make perfect sense to try out on my leg.

I shall of course listen and take on board anything my doctor suggests, I presume he shall offer me some sort of muscle relaxant to help, and I shall happily do/try whatever he wants me to. However I think I shall really press this idea. After looking into it more, I have read about a number of people who have tried knee or leg braces and found that they had good experiences with them. I plan on waiting a few more days before I go to my doctor. I had originally planned on waiting two weeks before I went but I don’t think I can deal with the pain the tremor is causing for that long. The reason for waiting is so that I can go and say, this has been happening, I believe it is a development of a previous movement, its been having for X many days and this is what I want to suggest. For me, I think this is the right approach to take with my doctor.

Who knows what will happen, I can only hope that he decides to give my idea a go! Until then I am going to avoid moving around as much as possible, so that I do not cause myself any more pain!

 

Posted in Archive, January

A subtle Reminder

Posted on by dystoniaandme

 Today I decided to have a nice long hot bath, as I felt like I had been run over by a truck repeatedly . After managing to bottom bump up the stairs, it was heavenly to be able to relax in the bath. I cannot describe how blissful it was to let my muscles relax in the heat. However it turned out that the relaxation was not to last. Without thinking I poured the shower gel onto my right hand. Immediately my right hand and arm went into a rather painful spasm.

This was rather disappointing, as for the last few weeks my arm and hand have actually behaved rather well (as long as I am not cold), and I had reached a stage where I was not to worried about it if I was indoors. The only reason for my arm and hand going into spasm, which I can think of, is that the coldness of the shower gel on my hand, in comparison to the heat of the bath, set of the Dystonic reaction.

This seemed to then set the tone for the rest of the day. I attempted to get on with the day and relax, however my little Dystonia alien seemed to have other ideas. My leg over the whole day has played up, so I have tried to avoid using it as much as possible. During dinner my arm and hand again went into spasm, after I attempted to pick up my spoon with my right hand. This spasm then went on to last a good 40 or so minutes before relaxing.

However I am trying to think positively as this is the first time in awhile that my right arm and hand have played up. This is a reassuring thought, so I am not panicking to much. Today has reminded me that I cannot take the days when bits of my body behave for granted! I need to value each day of peace, as there is no way of knowing what will happen one day to the next!

 

Posted in Archive, January

The Battle against my Foot, the Doctors and my Brain.

Posted on by dystoniaandme

When you wake up in the morning, what do you? Do you mentally wrestle with yourself to throw back your warm duvet cover, swing your legs out into the unwelcoming cold, stand up and start your day? This is a simple task. One you do every day without thinking about it.

For me, simple is not an applicable word for this every day task. Most days my mother wakes me up to give me my first cocktail of medications for the day. I stay in bed, at the moment for breakfast, as venturing outside of the safety of my mattress is a dangerous move to make. When I eventually have to get out of bed, it involves me calling for my mum to help. Once I have managed to get to the edge of the bed, my mum takes one arm and my step-dad or sibling will take the other.  They support me/attempt to prevent me from falling as I try to walk.

At the moment when my right foot is forced to try and work normally, it fights back hard. Often winning. My toes curl them-selves under, my foot flips over so that the top of it scraps painfully along the floor. And then to put the icing on the cake, it will twist in unnatural painful positions, as it protests violently against my will.

For me, at the present time, getting up and moving is an exhausting task. One that fills me with dread every time I need the loo, or have to move to a different room. Each time I attempt to move around, I try to clear my mind from panic. I tell myself over and over again, that this time  it might just be different, I might manage to walk a few steps, like I was doing before Christmas. I fill my head with positive thoughts. However when my foot then starts to contort, it is physically and emotionally draining.

I wish the doctors could see me like this. See me at home, when I am out of my wheelchair. Where a small glitch in my brain makes me vulnerable in my own environment. Where I struggle to walk one step, where my family catches me when I collapse, where my family protect me from my surroundings when the pain causes me to have a Seizure. Where they could see that I need help now and not in a years time!

However I must remain positive, I must focus on the fact that before Christmas, I was slowly making progress, and learning to walk again. The fact I started to walk, reassure’s me that I will again. Until then I just have to suck it up and deal with it. I must be pro-active. So I shall blog , I shall write letters, and I shall make the doctors and the politicians listen. I shall make them understand just how life changing and debilitating Dystonia is and I shall make them take action! I shall not remain silent!

Posted in Archive, January

Consultant News and Meditation.

Posted on by dystoniaandme

Yesterday evening I finally received an email from my consultant saying he would see me next Tuesday at 1pm! I am so happy, it will be such a relief to have the Botox done, so that my Ormandibular Dystonia will not cause me any pain for a few months. Another bonus is that when the jaw pain eases off, so do my Non Epileptic Seizures! I am going to have a word with him while I am there, about what I do when the Botox wears off next time, as I find it unacceptable to have to battle for so long to get seen!

Over the past couple of months I have read a lot of articles to do with meditation helping with Dystonia. In most cases stress aggravates Dystonia, so doctors often advise their patients to try to live a ‘calm and stress free life’. This is rather ironic, considering that Dystonia causes stress itself due to the pain it inflicts and its life changing nature. This is where meditation comes in, particularly Mindful Meditation. It is all about sitting or lying down comfortably (I know this is often the hard bit to do for Dystonia Sufferers) and trying to focus on the present moment, feeling calm and relaxed.

When I first heard about Mindful Meditation, I was not sold by it, I was very dubious as it seemed a bit ‘fluffy’. However after reading more into it and reading claims that it really did help keep  stress levels down which in turn calmed  Dystonia down a bit, I found myself thinking why not. I am at the point where I shall try anything, if it means that I can have some sort of slight relief from my Dystonia.

I ended up scouring Amazon for books on meditation, Mindful meditation in particular, until I found three, that not only looked like what I wanted, but had a lot of positive reviews as well. I brought Living well with Pain and illness by Vidyamala Burch, Relaxation for Dummies (also comes with a fab CD to guide you through your meditation) and Heal Yourself by Anne Jones (I am just about to start reading this one).

After spending a few days reading through Living well with Pain and Illness, and Relaxation for Dummies, I decided to try meditating for the first time last night. I put on the CD provided to help guide me through it. As it was my first time meditating, I chose to do the shortest one first. I must admit that I was pleasantly surprised. I had started the meditation in a lot of pain due to my jaw spasm, and was feeling rather stressed over it. However by the end of it I was feeling fairly relaxed. I was still in a lot pain, but I was not stressing  as much over it.

Research shows that after a few weeks of doing mindful meditation, that the brain actually shows a physical difference when scanned  The majority of scans show the stress section of the brain has actually shrunk, and the positivity section was lit up/grown. I am going to attempt to meditate twice a day for two months. At the beginning and end of the meditation, I am going to document how I feel and how my dystonia is. Then at the end of these two months I will compare how I am at the end of the ‘experiment’ to the beginning of it. It shall be an interesting and hopefully positive experience.

Posted in Archive, January

Today’s Support/Research Group and Dystonia Update

Posted on by dystoniaandme

This evening I went to a group that my GP signed me up for. It is designed for people with chronic pain symptoms, to help give them coping mechanisms that they can learn to use in daily life. The group is also for research so we were asked to answer questions, and give them our life and medical history, so that they can compare the results the group gets at the end of the 12 sessions to the answers provided at the beginning.

At the start, I must admit I was a bit dubious about the group, the leader seemed a bit mad, and everyone there was a fair bit older than me. I was also concerned with how much I would be able to take part in, as I am in wheelchair. However by the end of tonight’s session my concerns were long gone. I had managed to take part in everything, when they did walking activities, I copied their upper body movements, and swayed about in the chair. The other people their were lovely and I have a good giggle with them all. We also focused on our posture and did breathing exercises which I found to be very relaxing. The two hours flew by, and I cannot wait for the next session!

Today has been a rather positive day. After six hours of calling, I finally managed to get hold of my Consultants Secretary, who has promised to chase him, and have him contact me ASAP, I am hopeful that he will, but I shall just have to wait and see. I have had no Non Epileptic Seizures at all today which is fantastic and my head and body are feeling much better.

My local Riding for the Disabled stable phoned me today, and as long as my Non Epileptic Seizures stay calm, then I shall hopefully have my first RDA lesson next week! I am rather excited!

Posted in Archive, January

Visits from the Doctor, the Occupational Therapist and our MP

Posted on by dystoniaandme

Yesterday I was visited by my GP, my Occupational Therapist and our Local member of parliament. I found the visits interesting in their different ways. The first to visit me was my Occupational Therapist, she is an amazing woman, who does above and beyond what is required of her. She has looked after people who suffer from Dystonia before, so she has a good idea of what the condition is like. Upon being in the house for 20 minutes, and watching me have bad jaw spasms and many Non Epileptic Seizures, she could not believe that I had not been admitted into a hospital as an emergency case!

Next came my GP. My GP is lovely, he does try his best to cope with my condition, but he has never dealt with Dystonia before so has very little understanding of how to treat/cope with it. My GP came to do a home visit as my head has not been right since I hit it on New Years Day and because due to my new Seizures there was no way we could safely get me out of our house. He did the usual basic observations, e.g my blood pressure, my pulse and my temperature. All where normal except my temperature which was ever so slightly up. My GP had never seen my Seizures before, and I don’t think he had a clue what to do with them. After checking me over, he decided that my body was most likely just fighting something off and that was what was causing the new seizures, and the collapse the other day. He did say he would inform my consultant as well.

Now this is the bit I find interesting.  Compare the reactions of the Occupational Therapist who has seen Dystonia before, and the Doctor who has never seen Dystonia before. One thinks I need to be hospitalised as an emergency case and the other thinks my body just has a bug. I think these two very different reactions, are very interesting.

Finally our local member of parliament came to visit. This visit did not go as I had hoped, he listened, made noises in the right places and said he would right a letter. I’m not sure what I was expecting him to say but I had hoped for a more positive outcome than what did happen  The most interesting thing he did was freak when our cat entered the room. It seems that I am going to have to do more complaining myself. I plan to start by writing to the heads of the hospitals whose system have failed, and take it from there.

Living with Dystonia is never going to be easy, and I can only hope that I will be one of the 1 in 20 of us who randomly, for no known medically reason, go into ‘remission’. I plan to draw as much attention as I can to this condition, until someone in the NHS or government realise that their system is failing us!

 

Posted in Archive, December

Lasts Nights Fight With My Jaw

Posted on 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.

 

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.