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

Posts tagged ‘benedict’

Happy 4th Birthday Blog

Can you believe that today is the fourth birthday of Dystonia and Me? It is astounding just how much difference another year makes. My battle with Dystonia and my other conditions is one that for a long time I have felt I was drowning in. It has seemed like a constant tug of war, desperately trying to stay on top of my symptoms. For many years it seemed to me as if my little alien was always ten points ahead of me, and I was treading water trying to regain my lost control and catch up. Today I can quiet firmly say I am miles ahead of my alien, I am now basking in the peace of coping.

I’m not saying that I don’t have my down days, there are plenty of days when my spasms, seizures and dislocations just seem too much. However, what I am achieving makes those days worth while. In the last year I’ve completed my first year of uni, managed to live a life so full that it’s been beyond my wildest expectations for myself, I have been nominated for an award, interviewed several times by the BBC Three Counties, and I have had a blog post censored (which is why if you’ve been looking for the last one you have been unable to find it). I’ll let you guess as to which one of those I am most proud of.

12736673_837432453049202_23307495_o

When I started blogging it was to raise awareness of Dystonia, in a short period of time it has grown to encompass a whole host of conditions that I live with. In 2012 when I created Dystonia and Me, I had hoped a handful of people may read this site and learn something new that could have the potential to help others. I never expected this blog to become the lifeline that it is for myself. Blogging my experiences, good and bad, has enabled me to accept my complications and learn to love myself again. Through this blog I have come into contact with incredible people who I admire greatly.

If you had told me a year ago I would be writing this, I would have laughed. I was so caught up in my worries and excitement about starting uni that I never thought to think what could possibly lie ahead. Who knows what will happen in the next year!

download

Advertisements

Finding Benedict

I was up in London today for an appointment with my fantastic neurologist. Whilst I always stress over the little things like timings, how the injections will go and medications, I never stress over seeing him. His manner is so calming that during the appointment I feel as if it doesn’t matter what he says, it’ll be okay as we will always put a plan of action in place to try and make the future as pain free and positive as possible! The hospital I attend has some fabulous Toy Story themed stickers on the wall in the waiting room which I love. As I’ve mentioned before I always picture my Dystonia to be a Toy Story style alien named Benedict. Which is why this picture naturally had to happen today 🙂

13324351_916402428485537_1907666206_o

Finding Benedict!

I’m currently coping with Optic Neuritis on top of everything else. The hospital which I’m under for this had decided to leave it up to my neurologists as to whether or not I was treated with steroids. He has decided that he wants me started on steroids and wants an MRI with contrast carried out, as this is my second flare up in six months. I shall be spending Thursday at the eye hospital so hopefully I can talk to them about getting all of this put in to place and moving forwards.

Overall today went extremely well.

Week 7 – Agony

imagesI’m currently on week seven of my Botox cycle. My injections are not being administered for another week due to a mistake (lets presume it’s a mistake and not my new neurologist being devious, because being frank I would not put it past him). I should be in bed asleep right now. Normally I would currently either be asleep or out with friends. Instead I am medicated to the extreme, I have lavender wheat bags heated up wrapped round my neck, and resting along my jaw and heat packs stuck along my back. To say I’m in agony would be an understatement.

I have resorted to taking Oramorph, a medication I try my best to avoid, however I would much rather give in and take it than have a seizure (click here to read what a seizure is like), and right now I’m concerned that with the amount of pain I am in that I will have one. My brain is not staying connected to my mouth tonight, functional paralysis is something I have suffered from for a few years now, but it has never ceased to terrify me. I understand that it is simply my brain being unable to cope with the amount of pain I am in, so it disconnects from the affected part but it is an unnatural experience that no matter how much I attempt to laugh off unnerves me.

Tonight my jaw is particularly bad, and is frequently being functionally paralysed leaving me unable to verbally communicate. It may seem like a small thing to some, but when you are trying to desperately to get any part of your mouth; whether that be your lips, tongue, just anything, to move and they won’t, apart from when they spasm, its horrendous.  I cannot yell for help if I need it, I cannot cry in frustration or call someone to talk too to distract myself. I am stuck with my jaw spasming, distorting itself in ways that should not be possible, threatening to dislocate, and all I can do is cry silent tears, pray that I do not have a seizure and use this blog as an outlet for my pent-up frustration with this crushing condition.

I have a 9am lecture tomorrow morning. Which I am determined to attend, most likely in a wheelchair for my own safety, one of my close friends has agreed to take me there which has helped put my mind at rest. For now it is back to attempt sleep and hope that my little Dystonia Alien allows me some rest

Using My Wheelchair At Uni

12076411_769374493188332_1203309027_oToday was the first time I have had to give in and use my wheelchair at uni. I had anticipated that today would be harder than usual as I had traveled to London yesterday for my routine injections. My body always reacts badly to them for the first 24 to 48 hours, normally this leaves me in a lot of a pain and with an increase in spasms, which with a mix of painkillers and muscle relaxants I can manage. I therefore had not expected to fall over when getting out of bed this morning. My back and neck had gone into a hideous spasm and my brain had functionally paralysed both legs and my left arm. I spent half an hour lying on the floor like this, debating what to do. I gave myself an hour in which if I managed to get dressed I would venture to uni in my wheelchair and braces, and if I was still on the floor I would ring the Wardens.

I felt extremely proud of myself that it only took half an hour to get dressed this morning despite my brain fighting me, this must be a new personal best. I admit that as I braced the majority of my body I was extremely nervous. My peers are aware that I am ill, but they have never seen me like this, I had no idea how they or my lecturers would react. Within minutes of being in uni my nerves were swept away. Not only did no-one bat an eyelid, but people helped me when I needed it without me even asking.

Part of me had strongly wanted to not go in to uni today. I was worried of what others would think, and how I would physically cope, I had already had several draining days and was concerned that this on top would be too much.  I am extremely glad that I took the leap, and forced myself to go. It will help keep my mind at rest the next time my brain decides that a day of alternating between spasms and paralysis would be fun.

Three Years of Benedict

Today marks three years since my life got a good shake up as my Dystonia alien made its presence known. So much has happened over the last few years that it’s hard to keep track, I’ve had a handful of operations, countless x-rays, far too many ambulance trips, and appointment after appointment with varying Consultants. I have also gone from being reliant on a wheelchair fulltime, to being able to walk with the aids of splints!

It has been an incredibly emotional journey, and I think that’s a naturel response to everything that’s happened. I’m finally at a place in my life where I feel like I am climbing the mountain that is Dystonia, instead of tumbling down it. I still have days like today, where it’s more like I am stubbornly camped out on it, refusing to fall. This morning I woke with my jaw in spasm, and my neck spasming on and off. So naturally I have spent a section of this afternoon lying on my living room floor, as the support that position gave my neck and back was the only way I felt comfortable. A year ago doing this would probably have left me feeling annoyed that I had resorted to doing it, today I was simply laughing, though maybe I am simply losing the plot.

Battling this condition has become second nature, nowadays I always have medication on me, and sometimes there’s even a TENs machine in my handbag. It surprises me how quickly Benedict has become accepted into everyday life without a second thought. This is a bittersweet realisation. It’s fantastic because it shows we are managing, that we are not drowning under the pressure the condition puts upon us. However a part of me feels sad that it has become so second nature, simply because who wants it to be part of their routine to remember to take one of their many pills or injections?

I’ve always kept score against Benedict. I think this year I finally got even.

Jaw Acrobatics

Oromandibular Dystonia was one of my first symptoms that I suffered from before the Dystonia became generalised in 2012. Working on a trial and error basis with my Neurologist at the time we tested which Botox routine would best work for me, as it was clear 12 weeks was too long a stretch. Eventually we found the magic number, 6. Since then I have had my injections every six weeks and it has only been on the rare occasion that I have had to deal with my jaw spasming.

Jaw spasms. Two little words, yet they strike so much fear in me. The small spasms at best are uncomfortable, the extreme ones dislocate my jaw and cause seizures. My little alien loves causing spasms that leave me crying, clutching at my face as it contorts. In all honesty I couldn’t tell you why I grab my face. It’s an automatic response, as if a small part of me believes that if I clutch hard enough or push in the right direction, the pain might all go away. A child’s belief really, but one I find myself immersed in every time.

You would think that after almost three years of Benedict pulling my body this way and that, that I would no longer feel embarrassed by the teething tummy I resort to using to help prevent my upper teeth digging into my gums during a spasm, that I would no longer feel humiliated by the fact that I have no control over the majority of my body. I deal with the embarrassment better than I used to. I now force myself to carry on with my life and go out when I’m spasming, whereas previously I’d have shut myself away.

teething dummy

I spent Sunday with my boyfriend, it was the first time he had seen my facial spasms. He was great, and helped me medicate myself. At first I dealt with it fine, but eventually as the day wore on and I got tired, the spasms got worse until I resorted to using the teething dummy. I’ve only met his family a few times, so my embarrassment levels sky rocketed at this point. It’s not how I want them to see me, though I know that for them to be aware of my condition is a positive. What 22year old wants her boyfriend’s mum to see her with a dummy?! These are all qualms I need to get over, and with time I shall do.

I have sent my old neurologist an email informing him of my rather disappointing appointment with my new neuro. I am hoping that he will be able to speak to my current neurologist, so that he will agree to do six weekly injections. It may be a long shot, but it’s getting hard to hold my head up as well now. My next round of injections is not until the 12 August, so until then my dummy and TENS machine are my best bet.

To University And Beyond!

I have some incredible news for you all! I think this tops all my positive news so far this year. I have been offered an unconditional place at Oxford Brookes University to study an undergraduate degree in Publishing Media this September. This wasn’t planned; more about that later. I applied just over two weeks ago and it was a shock to find myself typing out my personal statement, however I’m over the moon and counting down the days till the course begins.

I went to an open day last month with the idea in mind that I would apply to study in 2016. Whilst I was there I had a lovely chat with the course leaders who were impressed with my Cosmo articles, my work editing the church magazine and of course my blog. They encouraged me to speak to admissions and apply as a late applicant to study this September. In all honesty I didn’t expect to get a place. The deadline to apply was back in January so I was really pushing my luck. Yet can you believe it, for once luck is on my side?!

I was astounded at the open day by how disabled friendly the university is. The ensuites in the disabled accommodation are comparable to modern hospital disabled facilities. Ironically it will be easier to keep myself clean at uni than at home! The disability service team talked through with me the support that will be on offer for me, which really helped put my mind at ease. There will be a pull cord in my room and bathroom for if I need emergency help when I’m in the flat. On days when I am suffering from a flare up of symptoms l I can ask for a ‘buddy’ to be with me all day in case I need help. There is a fantastic range of support available for both my physical difficulties and my Dyslexia. I have been beyond impressed by the speed of contact from the disability team. I only received my offer yesterday from the university but this team have already been in contact to arrange support for the upcoming year.

It’s all happened so fast and I’m sure the next two months will fly by. Returning to university study is a huge step. Moving to university is an enormous step. I have relied on my family to care for me, when Benedict the Dystonia Alien decides to come out and play, for so long. I have never had to deal with my condition on my own, so this will be a big learning curve, but it is one that I am extremely excited to experience. The next three years I’m sure will have bumps in the road but I plan on enjoying the journey!

11347764_726931144099334_1957156175_o

Exploring Boundaries

Before I became ill I frequently had periods away from home. Whether that was holidays with friends, slumber nights with mates or living in halls at university during term time. Having independence rudely snatched away by Dystonia has been something I have had difficulty adjusting to. To a degree you could say I have refused to adjust to it and have enjoyed pushing my boundaries even if they landed me in hospital.

At times rolling over, bowing down to my alien and declaring its victory, has been tempting. However I’m a stubborn person, a trait that I am rather sure is one of the reasons I have come as far as I have in my battle against my many illnesses. Up until this weekend I had not spent a night away from my family (my mum has always slept at the hospital with me) due to the severity, complexity, and erratic nature of my health. Over the last year we have finally found a combination of medication and regular injections that has helped to manage my symptoms enough to give me a better quality of life. So I decided to embrace this new found stability (though I shall admit I still have some unexpected moments, and have almost hit my boyfriend on a few occasions), and spent the weekend in Manchester visiting two of my old flatmates.

20150613_221427

My flatmates Emily and Rachel are very close to my heart. I see Rachel several times a month as we live seconds away from each other still, but Emily I haven’t seen since 2012 though we have kept in touch. They were both there for me in uni when my body started going downhill, and have spent numerous occasions in hospital with me at silly o’clock in the morning. To have my first time spent away from my family be with these two girls meant a lot to me. It was also quite reassuring as they have both done their nursing training, so I was in safe hands!

Today I am shattered, after a full on weekend with the girls, a subtle reminder that although it feels like no time has passed since we last were all together I’m slightly more fragile than I was back then.

Benedict Blindness

I had been worried about how my body was going to cope with college and the added stimulation. Thursday and Friday at college went perfectly with only minor hiccups,  which led me into a false sense of security. In typical Benedict style I was shown reality yesterday. As I was feeling pretty good and only a bit tired – I should have seen this as a warning sign – I decided to go with some of my family to a friend’s house warming party. It started off fine, I was enjoying myself, and even indulged in a cheeky Gin and Tonic. However soon the tiredness really hit, again this should have set of the warning lights but I ignored it and carried on chatting.

My eyes spasms, the ones that cause me to go blind due to the eyeballs being pulled up and back, started. At first they were not too long, but they kept happening and started causing seizures. Leaving at this point was not an option as my brain had disconnected from my legs, leaving me functionally paralysed.

Then it all calmed down. I thought my little alien had gone back to sleep. It turned out to be the calm before the storm. I went blind again, and this time my eyes didn’t seem to be coming back, I tried sensory tricks which failed, I even started hoping I would have a seizure as that would normally bring them back yet I was staying unusually conscious. This began to make me nervous, I was in a new environment, surrounded by lots of people who I didn’t know (they were however all very lovely and helpful), and this spasm was becoming unusually long.

The longest this particular spasm has ever lasted is 15 hours, and after an hour of being blind I began to panic that the same thing was going to happen. When I get nervous I talk…a lot, which my poor mother had to put up with. After taking some Diazepam my legs came back however I still remained blind. In the end we decided that the best thing to do was to try to get me out the house and to the car whilst I was blind and then judge what to do when we got home. Getting out of the house however was the tricky part. I had to, using my crutches and splints, walk out and down two small steps, then up two steps and then transfer back to my wheelchair. Doing this whilst I am able to see is hard enough, so doing it blind was going to be difficult. With the help of my parents and some lovely people I got down the first two steps and up one, it was at this point – just one step away from my wheelchair that I had a seizure.

I am so thankful for all the people that were around me, caught me, and helped me. If they all had not caught me I would have without a doubt woken up in A&E hooked up to IV pain relief. Between them all they managed to get me into my wheelchair, and then waited around until the space between my seizures was long enough to transfer me into the car. Thankfully, once we managed to get me home and got some Oramorph into me, my seizures calmed down and my eyes started to stay in place!

After a chat with my mum, we have agreed I am not allowed to go out/do much at the weekends for the first half term of college, so that my brain can adapt to the added stimulation and learn to cope with it. This way I can stay safe and realistically it will eventually enable me to do more.

I have to learn to take baby steps before trying to run. I’ll remember this one day. On the positive side at least I could see for some of the house-warming and had a good time!

 

Life Challenges: Would you fight or would you run?

At 20 years old I didn’t expect to feel like my world was crumbling around me. I thought that I would be out clubbing with my friends, or trying to stay awake during a night shift on placement. I expected to be having the time of my life. The reality is extremely different to the expectations I had.

Today I felt like life was trying to show me just how difficult it could make my life. I knew this weekend would be a hard one anyone due to personal things, however it has so far been hell. Yesterday afternoon until I went to bed, my hand did an extremely painful spasm, that resulted in me having hours of Non Epileptic Seizures, with only a few seconds of consciousness in between. Then today I have spent the majority of the day unconscious having seizures. Again these were caused by a bad hand spasm.

I feel like every bit of normality I had (e.g uni, relationship, walking, freedom) has been cruelly snatched away from me. I have to fight constantly with different government departments, with the NHS, and with my own brain. I won’t ever give up, but at the same time I am already very emotionally and physically tired.

Today due to spasms and seizures I have not been able to get out of my bed. I have felt so many emotions, such as anger and sadness, in some ways I feel as if today has defeated me. Now I know I will get up tomorrow and continue to fight, but I should not have to fight! Days like today I dread because of the way I feel physically and emotionally. I am lucky that bad days are few and far between. I have not felt this bad since January 1st. I will never stop fighting Dystonia, just like I will always campaign to raise awareness of it.

I keep thinking how silly it is of me to get so upset over everything that has happened to me. I could be so much worse off. I guess in a way I am grieving for the life I had, whilst carefully trying to create some degree of normality for myself. Life challenges us all in different ways. Whether we run screaming away from them at the top of our lungs or battle it with all we have, is up to the individual. For me I shall battle on, whilst knowing that on some days Benedict is going to have won and I am going to be unable to cope, but that is just at that moment in time. Who knows how I will feel the next day or the next month or even the next year! I need to learn when to accept defeat for that day and start preparing myself to battle on the next.

Image

 

Tag Cloud