Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Archive for the ‘January’ Category

Hospital visit and a girlie shopping day!

Today started out on a bit of a low but ended on a high. This morning my step dad and I, set out rather early to battle the snow, to get me to a hospital appointment in Chelmsford, Essex. The drive normally takes an hour from Tring (Hertfordshire) but due to snowy conditions took a lot longer than expected and at times we were doubtful we would make it there on time. Thankfully we arrived at the hospital 20 minutes early so had time for a quick coffee before going into see my consultant.

I was getting the results back from some procedures I had recently had (2 different types of Endoscopy’s) , in relation to difficulties I have had for some time with vomiting  regurgitation and acid reflux. It turns out I have a condition called Rumination syndrome. For many years this condition  was thought to be a psychogenic condition that only affect infants and mentally disabled people. However, more recently it has been discovered that it can affect healthy infants, adolescents and adults as well, and in the majority of cases is not psychogenic… yet they still have not found out what causes this. It is poorly understood and is often unheard of by the medical profession, patients and public. Unfortunately there are no pills or surgery to cure the condition  My consultant also believes that I have Dystonia affecting my Oesophagus and thinks that this aggravates the Rumination Syndrome. However, the Rumination Syndrome, does not really bother me at the moment, so I am not to fussed about it. I know that by the time I wake up tomorrow I will most likely have forgotten all about it. That may sound silly but I do not see the point in concentrating on the negatives in life.

On a more positive note however, whilst I was in Chelmsford today, I went and met up with one of my close uni friends, and had a fabulous girlie day out shopping! I tried to push myself around the shops, however my arm was not at its best and after sending a number of objects flying in New Look, we deemed it sensible for Emma to spend the rest of the day pushing me around. The poor girl.

I had such a fantastic time. Not only did I get to have a good catch up with her but I also felt like a normal everyday young adult! I did not have my parents with me, which gave me more independence, and I felt like I was on top of the world. The day went perfectly minus one or two spasms. It gave me so much confidence.

I was rather sad to leave Chelmsford, as when I was at uni there, I completely loved the city, and could not imagine ever moving away from it. The last time I was there was the day I moved out of the uni accommodation in July last year, after Dystonia put a stop to my Midwifery training.

However I refuse to focus on the negative. I am concentrating on how much of an amazing day it was and it was so good to see my friend. I am completely exhausted from it, so I am going to bed early tonight. I have a great week planned, a friend is coming to see me on Wednesday, I am going riding on Thursday, another uni friend is coming to see me on Friday, my boyfriend is coming round on Saturday and my grandparents are coming over on Sunday! It is going to be a good week.

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Amazing Progress!

Today has been truly wonderful! I had my third R.D.A lesson, and I made so much progress today. I really shocked myself! In the last two lessons I have had, I have had a leader and two volunteers on either side of me, so that they can catch me if I have a Non Epileptic Seizure whilst on the horse. However at the start of my lesson today I only had a leader, and by the end of the first ten minutes it had been decided I did not have a need for a leader!!! This was fantastic and I was extremely happy.

We spend the majority of the lesson in trot, and practising changing the rein in trot etc. This I adored, as I was being allowed to do even more than I had done in my previous lessons. I normally just do sitting trot and I just try to stay as still as possible in the saddle, however as my Dystonic leg was behaving rather well today, my instructor and I decided that I should give rising trot a go. I was slightly nervous at the idea of it, as I did not know how my leg would react. It turned out that I had no reason to worry!! I put as much weight as possible through my left leg (the working one), and started doing a slightly lop sided (but who cares about that) rising trot. To say I was in heaven would be an understatement. I felt so carefree and alive. I could have cried with happiness when I realised that all my leg had done in reaction was to twist sideways!!! This was such amazing progress and has given me so much confidence!!

There are not enough words to describe how much I love riding!! I treasure every single second of it, and feel very lucky to have the opportunity to ride among such a vibrant and supportive group of people.

I also attended my support/research group. As usual I had a laugh with the group, and really enjoyed the session. I had also made progress in the group, by being able to do some of the relaxation methods more successfully than I had managed previously. I left feeling very relaxed and over-joyed from having such a great day, full of amazing progress!

 

Yesterdays R.D.A Lesson & Support group

Yesterday I had a lesson booked with the R.D.A, I was a bit nervous about this due to the new tremor in my leg. I had emailed my instructor in advance to let her know that it may be slightly more difficult than usual to get me on. Her reply made me grin “Tremor or no tremor, we will give it our best shot”! She stuck true to her words, they gave it their best shot and managed to get me on! I hopped up the mounting block, then with my arms round two volunteers shoulders they lifted me up on to Connie so that I was sitting side saddle, I then swung my Dystonic leg over Connie’s neck and slid my feet into the stirrups.

After about a minute of having my feet in the stirrups my right leg decided to spasm, it shot out sideways and upwards. The volunteers and my instructors remained very calm and Connie did not even notice. Thankfully it was not a long spasm, once it had passed we agreed that until my leg had settled down completely, I would ride without the stirrups. I was completely fine with this, and happily rode round without them. After a while, when I was certain it was OK to risk putting my feet back in stirrups, I did so, this time my body did not react.

My riding instructor does fantastic lessons, and I was allowed to do a lot more trotting this time. We did trotting in general, trotted in and out of cones and over poles, it was complete heaven! The three volunteers that stayed beside me, kept saying that you would never know I was disabled if you watched me ride, as I sat so well and had good control. I must admit them saying this really made my day! I have to have three people around me at the moment when I ride, due to my Non Epileptic Seizures, as I only had my last one a few weeks ago, so we have to play it safe.

I cannot put into words that happiness that riding gives me. I literally sit and grin the whole time I am riding, taking in every magical second of it! I cannot wait until next weeks lesson!

Last night I also attended my support/research group. I love these meetings, they are so mad and positive that I just there and smile. Despite both my leg and arm playing up whilst I was there, I had a fantastic time. The group is extremely supportive and I find that the different methods we are taught for coping with pain are extremely helpful.

Overall yesterday was an absolutely brilliant day. It was so worth the aches I have today. Despite the aches, if you put a horse in front of me now, I would still try and get on!

 

Benedict comes out to play!

Today Benedict (the dystonia alien) decided to really wake up and came out to play. I was happily curled up with my youngest sister watching the 8th Harry Potter film, and all of a sudden my index finger on my right hand started to tremor. This gradually progressed to the rest of my fingers and within a few minutes my whole hand was shaking. I laughed it off, not wanting to worry my sister, and carried on watching the film, trying to ignore my hand. It eventually stopped shaking.

For the next few hours it behaved rather well and I relaxed and forgot about it. However when my mum held my hand to help pull me up, later in the evening, it instantly went into spasm and the tremor returned. Again this seemed to last a fair while. Consequently I have decided to put my splint back on my hand and refrain from using it as much as possible until my little Dystonia alien has decided to settle back down.

I am trying to stay positive and not let the issues with my hand and leg get to me. Tomorrow I have my riding for the disabled lesson at my local stable, and I don’t plan on letting my Dystonia alien stop me from getting on the horse!  I know it will make mounting even more difficult and I know my body will be bad afterwards but riding makes it worth it!!!I cannot wait for tomorrows lesson!

 

A trip to the Doctors

Cartoon DoctorI paid a visit to my doctor today, as my Dystonic leg is still really bad, and the extreme tremor has been going on for 11 days now. I was hoping he would be able to prescribe me some sort of muscle relaxant to try to take the edge of it. I also wanted to discuss with him about being referred to an Orthotic department, to talk about getting some sort of splint or brace for my leg, as I have talked to and read about people who have tried this and good results.

My doctor was not to sure what to do about the tremor in my right leg, and said that hopefully it was just one of those things that comes and then goes. I am really hoping that he is right as I find this extreme tremor very difficult to handle. It has really restricted how much I can do, for example in the day when I am on my own, I literally have to spend the day in bed, as I need people to help me hop around. I have decided that if by this time next week it is still bad then I shall go back to my Doctor and ask for him to prescribe me a muscle relaxant just so we can see if it works.

He seemed rather interested in my suggestion to try a brace or splint, and has said that he will write a letter to the surgical Orthotic team at my local hospital, and we will go from there. This was very positive, as I had expected him to say it would be best to discuss it with my consultant first and let my consultant handle it.

Overall it was a very positive appointment. Considering my Doctor knows extremely little about Dystonia, he really does try his best to help me the best he can. I hope that in the nicest way possible that I won’t have to see him next week. Just going to have keep my fingers crossed and hope that my right leg calms itself down.

A Bit Of Retail Therapy!

Today has been the highlight of my week and has distracted me from the new issues with my leg. My mum and step-dad took me out clothes shopping, which meant that I also got to push myself in my new wheelchair!  I knew that trying on clothes and pushing myself would be exhausting, so I made sure that I paid extra attention to my right hand, so that I did not do too much and cause it to spasm.

All in all  it was a rather successful day out! I managed to get some jeans and some lovely new tops, and I managed to push myself for longer than I had expected. From time to time my mum did have to remind me not to over do, I think I got a bit carried away with having some independence 🙂 In total I think I managed to push myself for about 40 mins!!!! This was a lot longer than I had expected. When I went out in my chair briefly the other day, I only managed about 20 mins, so this was a huge improvement!! It was a tiring but fantastic day!

I am going to go and see my Doctor this week, and see if he can suggest any medication that will help with the tremor in my right leg and talk about my ideas with him, and get his views on it all. I am also going to write an email to my consultant explaining to him the change in my leg and how it is affecting me and getting his advice on what to do about it, I shall also inform him of my ideas for treating my leg and get his opinion on that as well.

Today was exactly what I needed, some laughter, retail therapy and some independence. It helped me refocus my mind on everything, and see that although my leg is bad and making things really rather difficult, it is not the end of the world. I can still go out and laugh and shop like anyone else, the only difference is that I get to sit on a comfy cushion and attempt to tone my arms by pushing myself along at the same time!

Wibbly Wobbly leg

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!

 

A Step In The Right Direction.

Today has been a slightly better day, in comparison to the last 5 or 6. The last couple of days I have been almost unable to even hobble around the house, without one or two members of my family holding my arms, and helping me. Today however was different! My right leg still shook like mad, and my knee still over extended, but I managed to hobble around unsupported. I only managed a short distance, however I am still overjoyed by this as it is a big improvement compared to the last few days.

I am thinking about asking my Occupational Therapist for a walking stick. At 20 years old, I did not expect that I would have to consider this, however if it helps that’s what counts.. My theory is that having a walking stick will either go one of two ways. The first being that it helps me with my balance, so hobbling around the house becomes slightly easier and less dangerous. The second is that with my natural ability to fall over everything and anything, the walking stick will become yet another obstacle for me to try to avoid, yet will still fall over. However I will never know unless I try, and it is not the end of the world if it does not help. Anything is worth a shot at this point.

Tomorrow my new wheelchair is arriving! It is a self propelled one, which will give me some much wanted independence!  I am really rather excited about its arrival and cannot wait to go out in it! It will put my mind at ease as well. When ever I have someone pushing me, I have a mental freak out, I know that they are not going to deliberately through me out of the wheelchair, however I still end up muttering under my breath “stay away from the curb…watch out for the hole” over and over.

My hand also seems a lot better today, I have my fingers crossed that it stays this way. It has improved so much that I did not wear my splint today. This is really positive as I don’t like strapping my hand up, but it helps contain the spasm so I can’t complain.

I have also started to slowly increase my dose of Gabapentin, I am currently taking 1800mg a day and am hoping to get it up to 3600mg a day. As I am finding it to be a very beneficial medication my consultant thought this would be a good idea. I am doing it in steps of 100mg in case I start getting any side effects, that way I know how much my body can handle.

Overall today has been a very positive day and I am hoping that the rest of the week continues to stay positive.

 

Staying Strong!

I saw this photo/quote, and felt like I should share it with you all.

I, personally, find its words to ring true. As much as we wish life was perfect, nobody’s life is. Everyone has their own struggles in life, be it financial, domestic, illness, loss etc. At some point in life we will ask ourselves, why me?! Why am I having to go through this, I can’t deal with it! If you have not asked yourself this yet, then I am sorry to inform you that eventually you will. However when it comes to that point in time, when you are asking why me? That is when you must remember that if you were not strong enough to deal with it, then you would not be going through it. The experience may make you feel like it will never get better, and that is the moment you must remember that it will get better and that whatever you have had to struggle through, will make you a better and even stronger person at the end of it.

I have asked myself, why me, so many times recently. The question normally arises when I am going through a particularly bad spasm or am in a lot of pain. However, each time the pain stops and I relax, I can think more clearly, and I know that I would much rather go through this than see a member of my family, or anyone else go through it. I know that I am strong enough to deal with it and that’s why it is me who has Dystonia.

It is up to us to make the best out of a bad situation. For me, I have decided that instead of curling up in a ball and letting myself become a ‘sufferer’, I shall instead be an advocate for the condition. I shall try my best to make a difference! You never know, I might!

So if you ever are thinking, Why me?! Remember the above quote and know that if you were not strong enough for this life, you would not have been given it!

 

A subtle Reminder

 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!

 

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