Tag: Conditions and Diseases

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, 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

Take The Good With The Bad

Posted on by dystoniaandme

There is currently an advert on the T.V (I can’t remember which one it is, it looks like a Christmas one) that has a line in it that I love, ‘Take the good with the bad’.  This is so true, everyone goes through good and bad experiences in life, and at the end of the day, it is up to them what they choose to take from that experience.

Dystonia is not what I would call a good experience, to be rather honest it sucks and I would rather not have it, however this does not mean that I won’t take something positive from the experience. For example, because of Dystonia I did a charity run and raised £715 for the Dystonia society. Instead of focusing on all the negatives that Dystonia causes, I make myself think about the positives, such as I managed to wrap all the Christmas presents I had brought one-handed and they looked better than normal, I even wrote my Christmas cards with my left hand!

I understand that sometimes it can be hard to focus on the positives when you are in the midst of a bad time. However I think that forcing yourself to focus on the positives is the best thing you can do, it gives you a distraction from the negative. There is no point in sitting around wallowing, when you can be thinking of the positives; such as your personal achievements, and trying to figure out how you can make something good out of the experience.

Posted in Archive, november

Today’s Thoughts

Posted on by dystoniaandme

My jaw is still in spasm, which is really rather painful. However on the positive side of things, my medication, has really helped and my spasms in my right arm and leg have not been that bad these last few days. The pain in jaw can get rather intense and this tends to cause me to have a Non Epileptic Seizure. I am getting better at identifying when I am going to have a seizure. This means that I am able to inform someone, like my mother, seconds beforehand. This is a huge step and a big positive, as it means that whoever is with me, can try to prevent me from injuring myself during in a seizure. I am hoping that I will hear from the consultant soon, so I can get treatment for my jaw, which in turn should hopefully mean that my seizures will disappear again.

The path my life has taken, at this moment in time, is not one I would have chosen for myself. You would have to be fairly crazy to want to have Dystonia. However I accept that for now Dystonia is part of me, and I cannot magically make it disappear. Dystonia is one of those conditions that on some days is fine and does not play up that much, on other days, it is a gigantic pain.

I am so thankful to my family, friends, and all the many people who contact me to support me. They are all amazing and help me stay strong on my bad days. They help me laugh my way through the spasms, and make sure I don’t hurt myself to much during my seizures. I really don’t know how I would have coped with Dystonia without all these wonderful people in my life!

Posted in Archive, november

Facial Spasms

Posted on by dystoniaandme

Last night I got a bit of a shock. The left side of my bottom lip went into spasm, and the whole of the left side of my face looked and felt odd. Now I received treatment for my Oromandibular Dystonia on the 18th September, so I was not expecting this to happen so soon, as Botox injections last for around 12 weeks, and at the moment I am on week 8.

When I woke up this morning, my face felt and looked normal. Which gave me some relief. However after eating my breakfast I can already see and feel the spasm tugging at my bottom lip. It is in an extremely strange sensation. The only way I can describe it, is to imagine you have bad cramp in your lip and at the same time someone has a piece of string, which they have attached to your lip, and they pulling down on it.

On the positive side of things the spasm was nowhere near as extreme as it was before. I am hoping that as I have noticed the spasm happening at an early stage, I will be able to be referred for treatment and receive it before the spasms get to an extreme point.

 

Posted in Archive, november

The Weather and My Dystonia

Posted on by dystoniaandme

So it is getting to the time of year I love! The trees are turning beautiful colours, the air is getting cooler which always makes me start hoping for snow, and the shops start displaying amazing Christmas decorations. Just going out and about at this time of year puts a giant smile on my face. However my Dystonia alien has decided that he hates the cold! Every time we venture out into the cold, my Dystonia alien acts up, causing my right arm to spasm and shake violently.

I am therefore putting my foot down. The Dystonia alien may have control of the majority of my body but it shall not take control over my favourite time of year! I want to be able to go out in the snow! When out shopping today with my mum, we invested in some warm/fluffy mittens, and a lovely warm blanket to cover me up with when I am out in my wheelchair. My theory is if I wear loads of layers and cover myself up as much as possible then my body should hopefully not go into spasm.

It shall be another experiment, which hopefully turn out to be just as positive as the last.

 

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 Archive, november

Experiment!

Posted on by dystoniaandme

Yesterday I went out to the cinema to see the new James Bond film. I was really excited, yet filled with nerves. The reason for the nerves was that back in August I was diagnosed with Non Epileptic Attack Disorder, my seizures seemed to be triggered by extreme pain, lights being shone directly in to my eyes and flashing lights. Despite the fact that I have not had a seizure in over 5 weeks, I was still worried, after all with the amount of explosions that there are in James Bond films, there was bound to be some flashing lights.

So you can imagine how ecstatic I was, when we got to the end of the film without having any seizures. The flashing lights had merely set my dystonia off, which left me blind for a few minutes. The was yet another huge step forward for me, and has filled me with confidence. It was a very successfully and enjoyable experiment 🙂

 

Posted in Archive, november

On Top Of The World

Posted on by dystoniaandme

Today I have woken up and found myself to be in a great mood, with a huge grin spread across my face! The reason for this is that over the last few weeks I have slowly accomplished more and more. I am feeling pretty proud of myself! When my Dystonia started affecting more of my body, I found myself focusing on all the things I wouldn’t be able to do/ would struggle to do. Yet now as I look back over the last few months, I find that I have managed to do so much more than I ever thought I would be able to.

Though some of these accomplishments may seem small, such as learning to write with my left hand, for me these are huge steps forwards, that fill me with hope. I can now fill out forms with my left hand, I can go out in public and not worry about what people think of me and I can go shopping and try on clothes!!! All these little things reassure me that I can lead a normal life and enjoy it, despite my dystonia. At the end of the day, my dystonia is part of me, but it does not define me. It is my choices and actions that do.

Posted in Archive, november

My big 4.

Posted on by dystoniaandme

This morning I was feeling pretty down. All I could think was why me? After everything I have already gone through in my life, how was this fair? After feeling depressed for a few hours I started to think about the way I was looking at my life. At that moment in time I was looking at it all wrong. I was allowing my Dystonia to get on top of me, and I was looking at life from the wrong the point of view.

Instead of filling my head with negative thoughts, I started to focus on the positives. These are my 4 big positives.

1) If I didn’t have Dystonia then I wouldn’t have raised over £700 for the Dystonia society, a charity that provides fantastic support for sufferers.

2) Through this, I have brought awareness of Dystonia, to not only members of the public but also to members of the medical society who had not heard of Dystonia or seen a Dystonia patient before.

3) If I did not have dystonia, then I would not have had created this blog. This blog has not only raised awareness but has also put me in contact with some amazing people!

4) Dystonia has given me strength! The strength to go out in public in my wheelchair and not care what people think. The strength to stand up to the medical society. The strength to speak out and raise awareness! The strength to carry on fighting even when things are looking bleak. The strength and the determination to show the world what I can do. The strength to keep on believing that one day there will be a cure.