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

Posts tagged ‘quote’

A Year On

I am now a year into my battle against Dystonia and life has changed dramatically. A year ago I was a student midwife, now I am disabled and spent a lot of time trying to raise awareness of Dystonia. When I first received my diagnosis it seemed like the end of the world, I did not know how I was going to be able to cope with life. Now I am much stronger person filled with determination to make a difference.

I strongly believe that everything happens for a reason and even if you cannot see the reason at first, eventually you will. I believe I have Dystonia so that I can help raise awareness of the condition and help bring about a change so that sufferers receive better treatment. I still have a long road ahead of me but its one that I won’t give up on.

I visited my GP today to ask about further treatment for suspected Lyme Disease. I responded extremely well to the first month-long course of antibiotics, due to this my GP has prescribed me 8 more weeks of antibiotics to see if I have any further improvement on them. My main improvement so far has been in my hands, which has been an extremely exciting development for me. When I see my consultant on the 16th of this month I am going to put across to him that Lyme Disease could have caused my Dystonia. As Lyme disease is curable with enough antibiotics some of my current symptoms could disappear for good, and only the Dystonic spasms shall remain.

I also visited my dentist this morning to have my teeth cleaned. I can not rate the dental practice highly enough, despite my spasms and seizures whilst I was there they were extremely kind and patient with me. As my tremor is dislodging some of my teeth it is calming knowing that the dental practice will do all they can for me.

This afternoon I have a session with my reflexologist. I am so glad that she is coming today as I am extremely exhausted. It amazes me how quickly my body gets tired. I used to be able to be on the go all the time but now just two quick visits have left me half asleep.

I still cannot believe that I have suffered from Dystonia for a year now. Whilst I hate this condition, I also embrace it. By embracing Dystonia I am able to put all my energy into raising vital awareness and funds. The more awareness that is raised the sooner a cure will be found. My next awareness challenge I have set myself is to turn parts of my blog into a book. I  hope that by doing this more people will learn of the condition.

Dystonia may control my body, but I control the path I take in life. I choose to make a difference!

 

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A Fairly Positive Week

I have had some really positive moments this week! On Tuesday I had a meeting with a woman who works for a service called Cross Roads. Their service provides a range of support. On a Thursday morning, starting in a few weeks time, a guy is going to come over to care for me for a few hours. This means that my mum and stepdad will get a break from caring for me, instead this guy will socialise with me and help me with my meds etc. Not only will this give my parents a much needed break but it will be great for me to socialise with someone who’s around my own age. I am really looking forward to this starting.

My Jaw and neck spasms are rather bad at the moment. I am doing my best to try to ignore them but it is a bit had to ignore the spasms when your head is completely lopsided and your jaw is pushed right across. We contacted my consultant a couple of weeks ago asking to be booked in for Botox treatment, but as has been the case for over 2 months now, he has still not replied to any of our emails. We are going to phone his secretary tomorrow to ask her to chase him, however she never sees the consultants she works for and can only email them, so I am not sure how much she can do for me.

Yesterday and today have been amazing. Yesterday I had another fantastic session with my personal trainer that left me exhausted but extremely happy! I just love my Wednesday sessions. Today I went up to the stables and had a wonderful RDA riding lesson. I rode Nelly again, she is such a beautiful horse and fantastic to ride. She is slightly more challenging to ride than Connie but I love this as it allows me to work on and develop my skills more! Being around horses and riding puts me on such a high, if I did not have to dismount at the end of the lesson I would stay on the horse for hours! Riding is pure bliss!

As many of you know I took part in several fund-raising activities to raise money for the Dystonia Society and ended up raising more than £800!! Last week I had an email from the Dystonia Society saying that I was their fund-raiser of the month. If you would like to check out my interview please click on the following link http://www.dystonia.org.uk/index.php/component/content/article/5-get-involved/370-fundraiser-of-the-month

 

Yesterdays Fantastic Session with my Personal Trainer

I am not the type of person who likes to sit around all day doing nothing, I like to challenge and push myself. Sometimes I do not recognise my limits and I push myself to far but I would rather try than give up. Yesterday I had a session with my personal trainer. Despite feeling ill and having awful spasm for several days I decided to go ahead with the session as I felt slightly better. I am so glad I went ahead with the session as it was incredible.

At the start of the session I was a bit worried as we were going to try to do boxing. I was concerned that my arms would act up and that I would have a lot of spasms, however I will never let my Dystonia stop me from at least trying to do something, because if you never try then you will never know what you are capable of. It was the most fantastic session as my hands did not spasm once! I had a teeny tiny arm spasm that wore off very quickly, but I don’t really count that.

I still feel like I am still on high from the session, it was extremely therapeutic as well as a good work out. I am completely astounded at how well my limbs behaved, it has filled me with joy as it was a fantastic achievement. My arms were not to great later in the day but I did not care as I felt like I was sitting on top of the world.

As an able-bodied person I never tried boxing, I brushed away from the idea of it, declaring that my lack of coördination and my ‘girlie’ attempts would be embarrassing. So I am actually rather thankful that because of my Dystonia alien I got to try boxing out. It was an amazing experience, and I don’t think my punches were ‘girlie’ at all. Over the last few sessions I have realised that I am stronger than I thought.

I feel extremely lucky to have found a personal trainer who is not scared of my condition and who comes up with inventive ways to get me working out e.g using a crutch with him putting resistance through it to do a chest press. Without his fantastic help I am sure that my spasms and my body would me in a far worse state than what they are at the moment. His work outs keep my body moving, which helps give me that extra bit of mobility. His help has given me such confidence in myself and my ability to deal with my spasms. I never thought I would enjoy working out, unless it was on a horse, and now I love it. I love my daily work outs and I am always looking forward to my weekly session.

I know each Dystonia patient is different but I would defiantly recommend looking into a personal trainer to see if they can help you. You may or may not benefit from it, but if you never try you will never know.

Inquisitive Nature

Two of the most common questions people ask each and every day are how and why. Why do people get ill? How do we know that colour is actually green? Why is it always me? How does this work? Sometime we are not seeking an answer when we ask these question and the question has been asked in rhetorical way e.g why me. However the majority of the time we are seeking an answer. As humans, like the majority of animals, our own nature makes us inquisitive, we like to know the ins and outs of everything and anything, but if you put us in a situation when we cannot find an answer, well then we become fixated.

Which is exactly what is happening to me now. I am completely fixated on what caused my Dystonia, what turned my whole world upside down gave it a good shake and then righted it with all the pieces jumbled up! The logical side of me knows that the chances of me finding out why is extremely small, yet still I try to work it out. I sift through pages and pages of information grasping at any small shred that could contain the answer I’ve been looking for.

No matter how often I tell myself that an answer is not going to make much of a difference, I still continue my search. I am almost amused at myself for how desperate I am for an answer. For even when I find the answer, other than it giving me some piece of mind, it is not going to change much.  However until the doctors agree to help me, I know that I shall keep looking, so that if the day comes when there is no answer, I can sit back and think well at least I tried.

For now though I am going to try to reign in my inquisitive self, and remind myself to spend less time looking for something I may never find and more time enjoying the wonders around me.

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!

 

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