When I left university, I didn’t have much hope. I associated my midwifery training, the potential that it held, as a measure of success in life. Being unable to physically do the job anymore because my brain didn’t want to cooperate with my body left me feeling like a failure. For a while I didn’t particularly want to do anything but curl up on my bed and cry. My university was fabulous, they held my place moving it all the time for me, but I think we both knew I was too ill and in denial. I was grieving for a life that I wanted more than anything, I’d had a taste of it and I didn’t want to give up and let go.
After a period of feeling sorry for myself and being angry, I began to realise I had two quite simple choices. I could continue the way I was going, I could be bitter and resent myself for having an illness completely beyond my control. I could allow myself to continue in a downwards spiral, enabling the bleak abyss inside me to take over. Or I could snap out of it. I could pick myself up, slap a smile on my face and fight. I’d never gone down without a fight before why should now be any different?
In all honesty this choice is one I have had to remake several time over. Finally admitting to myself at the beginning of this year that the Dystonia being so generalised was going to prevent my Midwifery dreams was a difficult but positive step. For over two years I have fought in every way I can to continue having a normal life, I have studied, done charity work, attempting to find some way of finding even a glimpse of the fulfilment that I felt on my Midwifery course. Qualifying as a Reflexologist sparked something in me, I enjoy it thoroughly, but I am limited in my practice due to the Dystonia. My creative writing A Level though I love with a passion, reading and writing are two of my favourite activities. Studying them, well that’s just fun for me!
Last Friday (20 February) an article I wrote for Cosmopolitan went up on their website. For the first time in such a long time I felt a sense of achievement and fulfilment. I wanted to yell from the roof tops. I never thought I would see the day I would have an article on Cosmo’s website. I’m rather tempted to frame it. This experience has given me such a boost, it’s shown me that despite having Dystonia tuning life upside down and giving it a good old shake, I can still do whatever I put my mind do. It has been very empowering and a much-needed wake up call. Feeling full to the brim of nervousness, excitement, and joy; showed me that writing can give me every passion filled sense that Midwifery did, I just have to push myself. Dystonia can try to stop me but it won’t manage to.
At the start of this week I had an unusual amount of extreme spasms, these had been triggered by a medication and have now settled down. At the time it would have been sensible to have spent the day in bed where I would have been safe. Instead I dragged myself, rather literally, to college. Now my class have witnessed some of my spasms but not to this extreme. Previously I would have wanted to stay home due to embarrassment, instead I went to college embracing my illness and was only irritated at my pain levels.
As much as I would rather that I did not have any of my chronic illnesses, I am thankful for them. Since being ill my confidence to go out in public with my limbs distorting, my jaw dislocating and my body paralyzing when it has had enough has slowly climbed. Now I can laugh my spasms off and joke about them. I am very open with others about it as I would rather educate them than have these 3 illnesses remain unheard of. I must give credit to my class though who did not bat an eyelid at the extremes my body was going to, I know this helped me relax when I got there. Dystonia and Lyme Disease may have turned my life upside down but it has also filled me with determination and inspiration to pick up the pieces of my life. I always thought that I had to stick these broken pieces back together exactly as they were, retracing my steps, but what use is living in the past? Now I’m picking up the pieces and carving a new path for myself.
I am going to be cured of Chronic Neurological Lyme Disease, so despite the fact I will always have to live with Dystonia and EDS, I have so much hope in my life.
As I mentioned the other day I did some fundraising and campaigning at my college this week to raise awareness of Dystonia. On the Dystonia Society’s website they have a list of fundraising ideas one of them being Dress for Dystonia. This title inspired me. I encouraged both students and staff members of the college to get involved with my awareness raising campaign by putting on a Dystonia Society top. This ticked off two awareness ideas at once as the tops are green and it was twist on the Dress for Dystonia idea. Everyone who put on a top posed for a photo which I put into an awareness photo collage. Lots more people were willing to get involved than I expected which was great! The college have even done a news article on it and put it up on their website which is amazing as this too provides more awareness of Dystonia.
Since last Friday my Oromandibular (jaw) Dystonia and tremor has been rather bad. These spasms leave my jaw extremely distorted and the pain is constant. Unfortunately my Botox is a week later than usual, my appointment is not until the 18th of this month. Even though I know it is just under two weeks to go now, I am finding it hard to function due to pain.
However there is always a positive and I refuse to let this be a purely negative blog post. Despite the spasms that were severely affecting my jaw and neck last Friday I still managed to get into college. I cut down my workload as I knew it would not realistically get done without exhausting my body, but I managed to get in, which surprised me as I did not expect to in the state I was in.
It never ceases to amaze me just how exhausting pain is. Today my jaw has insisted on tremoring a lot. I use a teething dummy to protect my teeth and tongue, at the end of my last tremor however I was not quick enough at removing the teething dummy from my mouth, with the way my jaw then spasmed it got slightly stuck…I cannot even begin to describe how much this amused me, it took a whole hour before I was able to pry the dummy out from between my teeth. It really was hilarious.
It is moments like these that are vital. Dystonia is hideous. The pain that I am going through on a daily basis is enough that all I want to do is curl up in a ball and sleep until I can get my Botox injections. But sleeping won’t raise awareness of the condition, hiding away won’t beat the condition. Moments of pure hilarity are part of what makes Dystonia bearable and I am so thankful for these moments!
I feel like I am balancing on the knifes edge and that at any moment I could fall. My Dystonia alien and my Lyme Disease had really managed to lull me into a sense of ‘normality’, and over this past week have decided to send me flying to the edge of the knife filled with dread. Up until very recently I had coped rather well with everything, but everything seems to have gone out the window now.
Whilst I have remained seizure free there have been a few moments recently where I have felt right on the edge of one. Last Monday my mother and my little sister spent half an hour looking after me and talking non stop to try to keep me conscious. This has not happen in quite a while and was a shock to all of us. My legs have been bad recently, to the point that last week I did not make it into college on either day, which was to me a big defeat in my battle against the two conditions.
Whilst the pain is bad and gets me down, it is the unknown that I struggle to deal with. My body has progressed and regressed so many times, and each time I deal with it. However it gets harder to do so each time, and right now I have no idea which way my body is going to swing. It may pull through this horrid period and be absolutely fine or it may take a nose dive.
I know there is not much I can do other than stay positive but I can’t help but be scared. Hopefully this is just a bad period and soon my mind will be put at rest.
Since I became ill last summer, I have tried to be careful in everything I do. My body has limits and I have to learn to respect that. However it’s hard to keep within the limits when they keep changing, and when outside factors alter them constantly. I often tend to step over the boundaries, simply because I know that if I don’t test them now and then, I’ll never know what my body’s full potential is. Though I must admit I also do this simply due to craving the freedom my body once had.
A couple of weeks ago the college phoned me and asked if I would like to attend the Clothes Show Live 2013 at the NEC in Birmingham. After a discussion with mum about if this would be beyond my bodies limitations I decided that I would go. I was extremely nervous as the furthest I have been from mum since I got ill is when I ride, and that’s not far at all. If something happened, I knew that I would most likely wake up in a strange hospital before mum could get there. A situation I did not want to end up in. Thankfully all my worries were for nothing.
I had two of my learning support staff with me to make sure I was safe and to push me around. It was a truly fantastic experience that I am incredibly thankful for. The college had booked a coach that had access for my wheelchair in, and for the main runway show we had the best seats! Other than the odd twitch and my right knee paralyzing on and off, which I’m used to now, my body was perfect. I think I have shopped for this years christmas presents and everyone’s birthday presents for next year!
I expected my body to have a complete meltdown today, but other than being very achy it’s behaved well. I have managed to go to the opticians and have a couple of Coke’s out in town with my family, without any issues.
After Tuesday nights functional paralysis drama, I am pleased to report that my little Dystonia alien has not scared me witless with a repeat episode (so far). In fact other than a light and pain triggered seizure whilst at college yesterday, I have been rather good. I even managed to go riding on Thursday!
I spent Wednesday in bed resting, as I did not want to trigger off any spasms or seizures as I desperately wanted to attend both college and riding on Thursday. Amazingly my Dystonia gave me break from the recent dramatics and I only had to contend with my usual spasms. The normality of the usual spasms were a much-needed breath of fresh air. Both college and riding went fantastically well, with my spasms only acting up right at the end of riding – thankfully that was perfect timing,
Yesterday, for several hours my legs were functionally paralysed, this did not scare me as I am used to this happening several times a week. It turned out that it had been triggered by me strapping my splints to my legs too tightly – but hey its a lesson learnt. I now know to always check the tightness after strapping myself to them. I had a little light and pain triggered seizure whilst I was at college yesterday. I feel very lucky that the college dealt with this calmly and once I regained consciousness they let me carry on as if nothing had ever happened, which is just how I hoped they would react.
Today my body is extremely sore and I am experiencing an on/off functional paralyses to my legs. Therefore I am having a lazy day in bed. I am so happy that I am managing college and riding. I had been worried that the two would be too much for my body to cope with, but so far so good. It is days like the last few that remind me that despite being in a wheelchair and not really having control of my body, I can still make a life for myself and enjoy the things I love. I just have to remember to balance things out… I’ll get the hang of balancing eventually 😉
Happy, on top of the world, ecstatic, over the moon. Put this combination of emotions in to one and that is me now. Today has been a fantastic success. I attended my first day at college and loved every second of it. The lecture today was on Anatomy and Physiology, which was just perfect as I find it an incredibly interesting subject. A lot of what we covered today I had already learned at university so it was a bit like revision, I loved this as I had remembered everything, which enabled me to contribute to the lesson more.
Tomorrow’s lecture is a practical one. This excites me and makes me nervous. I am sure my body shall be fine with it, but as with all things in life you can never be a hundred percent certain especially with Dystonia, hopefully tomorrow’s practical shall put the tiny worries to rest. The four hours tomorrow shall all be practical but from next week onwards the Friday lectures shall be 2 hours practical and 2 hours focusing on business and how to set up your own business. This is fantastic as once qualified I shall be setting up my own business so that I can work from home.
I decided not to attend riding today as my sight has not been great. I have been full of the cold which has caused more spasms. It has particularly been causing an increase in spasms in my eyes. Annoyingly the spasm that has occurred most is the one that causes my eyes to roll up into my head, leaving me blind, the pain of this particular spasm causes me to have a Non Epileptic Seizures most of the time. This happened today at college, thankfully before the lesson started, but reassured me that I was making the right decision not to ride as I would be putting myself and the volunteers at risk. I am looking forward to next weeks session though.
I feel like a ball of positive energy! I am brimming with happiness and full of excitement for tomorrow. Being able to study again is so satisfying and opens many doors for me. In a way I feel normal.
The last few days have been truly fabulous! I got into college to study a Level 3 diploma in reflexology, had a meeting with the learning support team who were completely wonderful about my Dystonia, and today I have been out for lunch with two of my best friends who I had lived with at uni.
My course starts in just under two weeks, and at first will be only be for 3 hours one evening a week and then progressing to each saturday as well when we start working on clients. It is nice to have found something I can be passionate about and to study towards. Being able to study Reflexology is also rather reassuring as I can go on to work from home. I have spent months thinking I would never have a carer, but since taking the antibiotics which have calmed down my Lyme symptoms, I feel empowered and full of hope.
I was thrilled to go out to lunch with my friends this afternoon. Having lived with them at uni, I miss them a lot. I got a taxi up with one of them to the Beefeater, which was a good experience. Normally my mother or a family friend takes me if I’m going out somewhere, so it has given me confidence knowing that I am able use a taxi service with ease. I felt like a ‘normal’ person and did not feel extremely conscious like I normally do when in a restaurant.
Having everything go right the last few weeks and has been amazing, I have not had to fight to get what I’m after, which has been a nice change. I feel extremely relaxed. My little Dystonia alien is by no means letting me forget he is there, but I’m giving him no attention and basking in the positivity that is filling my life currently.
As you will know from my previous blog post a couple of days ago I was withdrawn from university after being on sick leave for a year because of my Dystonia. I had a few days of “why me” and “I want to go back to placement” before I actually sat down and thought this is not the end of the world, I refuse to do nothing, what can I realistically do now. So I had a look at my local colleges and what they offered, to see if I could find anything that interests me. I had been toying with the idea of going into reflexology for a while now and discovered that one of the colleges near me offers it. As my hands are behaving very well at the moment, I have taken a leap of faith and applied for the course. I am waiting to hear now if I have an interview or not. Not only will I be able to study if I get place but it will be a great chance for me to meet new people.
On holiday we discovered that my ability to go out and about had grown, so I was able to do much more than I was used to. Since coming home I have made a conscious effort to try to maintain this new tolerance level. I have managed to come through and spend some time in the living room and eat with my family in the dining room etc often, which is a huge improvement to before where I spent the majority of my time in my room. I even made it to Church today.
I have reached a point now where I am finishing a chapter and starting a new one so to speak. I have spent the last year hoping that some cure would magically be found and that this september I would be back at uni. Now that the reality has hit, I am closing that chapter an opening a new one that is full of possibilities. Maybe I shall get on to this reflexology course, maybe I won’t, who knows where I will end up.
Dystonia has been controlling my life now for long enough. I acknowledge that it’s always going to be apart of me, but I control my own life and I’m taking back the reins. I just need to know my body’s boundaries and respect them, so that I can start living my life again.
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