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.
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!
Friday to yesterday afternoon went fantastically, for once the Dystonia alien decided to take a bit of a break and let me be normal (well as normal as I could be). I thoroughly enjoyed every moment of it. However last night after dinner, the alien decided it wanted to make itself known. It started with my jaw/facial muscles, being pulled in every direction, which caused absolute agony in my TMJ (the jaw joint). Shortly after the spasms ended, another one started, which was more extreme than the last. Due to the pain the spasms were causing, I ended up having a Non Epileptic Seizure. This annoyed me somewhat, as I had managed eight weeks without one.
Since last night my jaw has stayed in a fixed spasm. It is being pushed to the left, whilst also being stuck slightly open. I cannot even begin to describe the pain that this is causing. Due to this I have had to resort to stronger pain killers. These pain killers are great but they do make me feel like I am away with the fairies. However I would rather feel a bit odd, than be in agony. This spasm has also created other problems, such as I am now unable to eat anything other than soup and yoghurt, due to the way the jaw has spasmed, and I am struggling to drink even through a straw. So now all I can do is wait for my GP to send off a referral for me to see someone about treatment.
There is a positive side to all of this though. I have been trying to lose some weight so I am hoping that by only being able to eat yoghurt and soup, it should help with the weight loss. 🙂 There is a silver lining to all problems.
Today I have been rather down. Which I suppose is to be expected. Most days I cope pretty well, but today I have felt so angry and upset. In February I am meant to be returning to Uni. Each day, February gets nearer and I get more and more upset and scared. When I left uni only my jaw was affected, and now I often go blind, I’m in a wheelchair and one arm doesn’t work.
Every day I try to push my body more and more, in an attempt to re-train my brain. I can’t imagine not going back to uni. The thought of not going back reduces me to tears every time, because I absolutely loved my course and cannot imagine doing anything else with my life.
At the moment my options are to somehow manage to re-train my brain in the little time I have left, or give up and tell my uni just how ill I am. I have to go with the first option, but there’s a little voice in the back of my head, that I am desperately trying to ignore, which is telling me the second option may end up happening.
I have had enough of this condition, I want to go back to my lectures, my community visits and my night shifts on the labour ward. The buzz of uni life. I want my old life back!!! I have until February to get better. I’m determined to it. It’s just working how to do it that’s the hard part.
Every day I am noticing little improvements in myself. For example today I put my foot flat on the floor!! Normally this would have caused a spasm. I was absolutely thrilled that it didn’t spasm, it was yet another positive improvement. I am putting all my little improvements down to one of my medicines. I am currently on a variety of medicines but Gabapentin seems to be the only one that is making a huge difference. At the moment we are slowly upping my dosage, to see if it will help me any more than it already has.
I am clinging to the prospect that it could be a ‘miracle drug’ for me. That if I take enough I may eventually walk, have my sight all the time and be able to use my right hand again. My biggest hope is that it will be enough to enable me to return to my midwifery training. I would take anything right now if it would enable me to able to return to uni and start doing my training again. With each improvement I make, I get more and more hopeful that I will return. I know that my chances of getting back on the course is slim, but I am still clinging to those chances. Hoping that if I push my body hard enough and stick with the meds, then just maybe I’ll get back to Midwifery.
I am however, bearing in mind that the chances of me making a full recovery is extremely slim, and slight improvements may be as good as it gets. If that is the case, then I shall still be happy as every little improvement is a big step forward.
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.
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.
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.
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 🙂
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.