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

Posts tagged ‘splint’

Would You Apologize For Shivering? Didn’t think so!

Every now and then I receive wonderful comments/emails/tweets from people expressing how reassuring it is to see me post pictures of my spasms. These messages often include phrasing such as “I don’t know how you do it, it’s very brave” and “I wish I had your confidence”. I don’t talk about this much, but when it comes to my spasms my normal confident self generally disappears. The stares in the streets, the whispers of “look at her face!” and people’s general ignorant remarks “Could you please stop or do it elsewhere” (usually in reference to my arm spasms) have caused me countless hours of upset. I don’t believe in wasting hours on being tearful over something I have no control over though, I hope the pictures below show that while hard, life as a spoonie can be fun.

               Does this splint blend in?  Laughter; the key to making the most of the spasm free moments!

In many ways I’m your stereotypical 23 year old, I take way to many selfies, own far too many shoes and grew up head over heels in love with books; a passion that has resulted in me wondering where to put them all now I’ve run out of shelves! I have all the insecurities that is normal of somebody my age: I am overweight, I do not care enough about fashion as I’d rather be comfy, and don’t even get me started on my complexion. It’s tiny insecurities that are perfectly normal but when combined with my spasms often results in self-deprecation. There are days when I can walk about not particularly worried about some of the smaller spasms I experience, and then there are days when I’m hyper aware and embarrassed when in public, not just because I need an aid such as my wheelchair or stick, but because my eyes are spasming causing functional blindness, and my jaw is contorting to the point of dislocation; this is all whilst my left arm is casually attacking anything in range.

When confronted by people asking me to refrain from spasms, I try to politely explain that it’s nothing I can control and apologize. But why should I. Should you apologize for shivering when cold? It’s a natural reaction that you would never dream of uttering apologies for. So why then should I issue out apologies for something that is just as natural. Sure, everybody and their friend may not experience it, but it’s my brain firing off incorrect signals that are just as natural as your shiver or yawn.

I live in pain every day and never know what to expect from my body. Yet people judge me for this. If all I manage to accomplish that day is a shower and pulling on a clean pair of pyjamas then who cares, all that matters is that I achieved it, other days I am capable of so much more. But just because I have had the energy and ability to carry out a task at that point in time, does not mean I will be capable of performing the same task five minutes later, let alone the next day.

I try to live every day ignoring the sideways glances and stage whispers, enjoying everything I am fortunate enough to experience. These days I try to capture my spasms on camera, as after all they are just as much a part of me as the functioning parts of my body. So when you are say I’m brave and ask how I cope the answer is quite simple. I’m not brave, I am stubborn, Dystonia and my host of other conditions will not stop me from living life. Coping is a different matter altogether. Some days it’s as easy as breathing, and laughing feels like the answer to everything. Other days curling up in my bed escaping into books where the words provide comfort and distraction is all I can do.

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Rocking my wheelchair!

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Troublesome Tremor & Consultant Conundrum

On Friday my jaw developed a painful tremor (see video on previous post) that has caused me more and more issues. Since Friday I have visited the out of hours doctors, been rushed by ambulance to hospital, and had an urgent visit to the dentist as the tremor is actually dislodging my teeth! It all is beginning to get a little bit too much and I desperately want the pain to go away. Knowing that the tremor is actually dislodging some of my teeth concerns me a lot. I still have a few baby teeth with no adult ones underneath them, so to know that this tremor is dislodging them is rather alarming. The Dentist I saw was an extremely lovely chap who reassured me that everything would be done to keep my baby teeth in for as long as possible.

As I have mentioned previously we have been emailing my consultant for several weeks now asking if he could book me in for Botox injections. Today I finally got a date, for three weeks time (July 16th). This is 5 weeks later than normal. Now this may not seem like a long time, but being in agony 24/7 and struggling to eat and drink makes the situation almost unbearable, I am currently only just about coping by taking Oramorph (morphine) and Diazepam. It is also extremely debilitating. I have pain triggered non epileptic seizures, not only does this often result in me ending up in hospital but it also puts major parts of my life on hold. I normally go to my local Riding for the Disabled stable on a thursday for a riding lesson, this is an activity that is extremely important to me and one that I thoroughly enjoy, however I am unable to ride when I am having so many seizures.

There was also no mention of my week admittance into the hospital that was meant to happen over two months ago in this email. I am now sadly looking into transferring to another consultant at another hospital as I feel completely neglected by my consultant. I feel like he dangles hope in front of me and then snatches it away without warning.

On a more cheery note I got my splint for my left leg yesterday! This makes things like getting in and out of the house so much easier and has so far been a joy to wear. It is amazing how much of a difference the little things in life can make!

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Leg Splint :-D

Leg Splint :-D

Yesterday I visited my local hospital to receive my leg splint from the Orthotic Department. We are hoping that the leg splint shall contain the spasms and enable me to rely on the wheelchair less.

The experiment begins 🙂

 

Two steps in the right Direction

After a week of being in pain, I am feeling a lot better! On Friday one of the GPs at my Doctors surgery prescribed me a muscle relaxant to help with the spasms in my back, it has worked wonders! The spasm has gone, my body is no longer twisting and I can finally move around without being in pain! I am going to my see GP on Monday to discuss whether we keep this particular medication for emergency situations or if there a different muscle relaxant that he feels would be more beneficial.

Last night I gave myself a rather pleasant shock. I had gotten out of bed to do something, and I walked the two footsteps there!! My body did not react to it at all! You can imagine my joy, as I have not been able to do this since January 1st!!! Not wanting to push my luck I quickly hopped back into bed, trying to work out if I had done anything differently or if it was just pot luck. I am so happy, and I am hoping that my body will continue to progress like this.

It is such a relief for my body to finally be doing something ‘normal’ without over reacting. Now I know that I may not be able to do this again, it may have been complete fluke, but on the other hand it could just keep improving. All I can do is hope that this a good sign. Hopefully when I receive my leg/foot splint that the Surgical Orthotic department are making for me, this should help me progress with walking even more! I just have to accept each day as it comes, it’s all about taking baby steps, as there is no use trying to run before I can walk.

No matter how dark may life may seem, there is always a candle of hope flickering somewhere, you just have to look for it!

 

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 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.

 

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