Tag: spasms

Posted in Archive, March 2016, September

An Exciting Month!

Posted on by dystoniaandme

This month is full of opportunities that I never expected to experience. Towards the end of the month I’m going to Amsterdam for a few days with the university, followed by three weeks as an inpatient in the Royal National Orthopaedic Hospital Stanmore. It is an exciting time to say the least.

The publishing trip to Amsterdam shall not only be an insightful opportunity for my course, but shall also allow me to explore how my body will react to travelling. Visiting other countries was a luxury, that when I first became ill in 2012, I thought would have to be swept under the carpet and not thought about again. However, in comparison to four years ago my bundle of conditions are extremely well controlled, instilling me with the confidence to explore this opportunity further. To help ensure that I am as safe as can be my neurologist agreed to administer my Botox a week early to knock unwanted spasms on the head.

Back in 2013 this was me; reliant on a wheelchair with monthly ambulance trips to A&E.

Three years on I’m incredibly lucky to have a regime of medication and injections that enables me to live life to the full. I still need my wheelchair every now and then, but it is no longer a necessity for daily life.

12575854_826427370816377_1942932212_nLess than a week after I return from the trip it is off to RNOH I go for three weeks of intensive rehabilitation for my EDS Type Three. I have been on the waiting list for this stint for almost a year and a half, so I’m a bag of excitement and nerves in anticipation for my admission. My time there should enable me to carry on life with better habits when it comes to using my joints, hopefully that will mean less over extending, and help strengthen the weaker muscles and ligaments.

During my interview for the treatment we discussed what I would like to focus on strengthening, my first answer out of the several I was allowed to give, was my jaw. The combination of EDS and Dystonia means that my jaw comes out of place extremely easily, which inflicts a severe amount of pain. Knowing that jaw physiotherapy will be possible is huge news for me, as this issue is the main factor behind my seizures. Anything that will decrease the amount of subluxations and dislocations for my jaw has the potential to make an incredible difference to my life.

Needless to say I’m counting down the days to go!

Posted in Archive, February 2016, September

Don’t Worry I Won’t Tell Anyone You’re Ill – Disaster Date 2

Posted on by dystoniaandme

Everyone says things without thinking sometimes. Often its harmless, and its only afterwards when you are reviewing a conversation that you kick yourself in the teeth and hope it was not taken offensively. More often than not these things can be laughed off. This date happened the other week, and as I sat there attempting to get to know the man across from me, I found myself biting my lip more and more. Now I don’t mean this as a tongue in cheek Fifty Shades reference. It was a preventive measure to stop myself from reacting to several comments that were without thought.

For the first hour and a bit, I gave him numerous passes figuring that these careless remarks were down to nerves. I know from experience that I waffle nonsense when nervous so was prepared to ignore the niggling voice inside me telling me to leave. Eventually I decided to address one sentence that shocked me. ‘Looking at you no-one would know you’re ill, which is great. Don’t worry I would never tell anyone’. I’m sure many of you can imagine the numerous retorts that I had to bite back before answering. A large mouthful of G&T later I addressed this.

I started slowly pointing out that I don’t hide the fact I’m ill. I’ve never hidden this fact, I am not ashamed of the person I am, so I’m not going to start hiding parts of me now. This got me nowhere. So I attempted a different tactic, explaining that when my injections wear off my Dystonia is very much noticeable. Whilst in-between injection dates it is well-controlled, once the Botox loses it effect I have no control over the affected muscles. My explanation fell on deaf ears, all that he picked up on was that I had Botox on a regular basis, which left me defending this choice as he viewed it as a medicine for cosmetic purposes only.

It goes without saying that there will not be not a second date here. While it would have been nice not to have to justify my treatment, I view it as good practice for the next person who chooses not to listen to my explanations.

Posted in Archive, January 2015, September

Surreal Radio Experience

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Today has been an experience to say the least. Whilst rushing around this morning attempting to persuade my non-cooperative arm into a jumper, I noticed I had a tweet from my local BBC radio station. I stood, gaping, one behaving arm in its sleeve, the other flailing through the air with a mind of its own. I’m not sure what I felt more, excited or nervous that I would ramble on faster than listeners could keep up with. Noticing this tweet a whole 40 mins beforehand wasn’t much prep time, but it wasn’t an opportunity I was going to turn down. As I discovered after a quick pre-interview chat, the show had decided to get in touch after reading my Cosmo article. The topic Disabled Dating, is one that many of you may be aware from my previous blog posts that I feel passionately about.

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It was fantastic to have the opportunity to discuss the stigma too often experienced because of disability. Whilst some people are absolutely fantastic, I’ve thrown my drink down my date before because I foolishly held it in my arm that spasmed; thankfully he laughed it off, others can be very closeminded and unwilling to consider the prospect of dating a disabled person. It was interesting to listen to George Dowell who was also on the segment and featured recently on The Undateables. Now don’t get me wrong, I haven’t changed my mind on the show. However it was thought-provoking listening to his experience.

If you fancy checking out the segment here is the link, the piece starts at 1h08, I come on at 1h16. http://www.bbc.co.uk/programmes/p03dsjr5

Posted in Archive, December 2015, September

But You Don’t Look Sick

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12394480_804191833039931_1805113062_oWell first off thanks for the compliment! I work hard on making sure that I don’t look completely awful. The more my body is playing up the more care I take with my appearance; it cheers me up, and that’s one step towards having a good day. Mr judgemental Taxi man, I may not look as ill as you would like me to, but I was on the way to the Drs this morning because on top of all my chronic health conditions I had contracted yet another chest infection along with sinusitis. Yeah my immune system sucks. Infections on top of my pre-existing conditions are always detrimental and not something my body copes with well. I needed to get a prescription to nip it in the bud!1419509_804226453036469_22790295_o

What do you deem as sick? Do I need to be wheelchair bound, using a walking stick or screaming in agony? Some days that is me. There are days when my meds are not strong enough to control my dysfunctional body, where my body contorts and contracts into positions that you could not imagine. Would you believe I was sick then? Not everyone does. There have been healthcare professionals who have stood by debating over which symptoms are real and which are fake in an attempt to get drugs. This is simply because they do not understand my conditions, I do not blame them, it’s not like my brain has developed the common ailments after all. However taking a moment to listen to someone before making a judgement is not hard.

Next time you see someone who isn’t stereotypically ‘sick’, pause and think.

Posted in Archive, December 2015, September

Laughter; Breaking Down Barriers

Posted on by dystoniaandme

What would life be without laughter? My life was full of it before chronic illnesses decided to move in, but over the last few years I can honestly say I have had many more laughs because of my disorder. Twitched and accidentally hit someone, tongue spasms, fallen over because I spasmed and lost my balance; all of these scenarios result in laughter, it has become my natural response. Yesterday an acquaintance was complementing my ability to cope, she mentioned how she didn’t know how I continued to deal with my mix of conditions day in and day out, and still be able to laugh. Now I acknowledge that not everyone would deal the same way as I do, but I cannot think of another way to cope.
Should I be angry, scared, terrified at the unknown implications of my disorders in the years to come? I’ll hold my hands up; I feel all of those emotions regularly. However, the sheer ridiculousness of the situations I have ended up in thanks to my dysfunctional body has ensured that these negative feelings are not consuming. Laughing, breaks down the emotional barriers that I put up whenever fear raises its grey head, and the barriers that others put up when they don’t know how to respond to what they have witnessed.
It is natural to see me spasm and hit something and for you to feel unsure how to react. We live in society where everyone is so easily offended, that people silently look the other way attempting to un-see the abnormal. If I am giggling at the hilarity of the situation, and let’s be frank it’s a painful but amusing moment, I would much rather you joined in. Laughter allows us to talk about what we are experiencing, it is a fantastic way to spread awareness. I’ve had friends who have mentioned they feel wrong for laughing. It would only be wrong if you were laughing at me, not if you are laughing with me. Don’t over-complicate a beautiful thing.

Posted in Archive, November 2015, September

Dear Mr. Hunt

Posted on by dystoniaandme

Over the last few month social media has been aflame in reaction to your demand of a seven day week NHS, and dismissive and degrading attitude towards Junior Drs. For weeks I decided not to weigh in on the argument but as an extremely frequent user of the NHS I feel it right to raise my voice. I may sit here typing away and complain about yet another run in with my neurologist, but whenever I have really needed the NHS they have been there, 7 days a week, 24 hours a day!

For almost two years my condition was seriously uncontrolled, this resulted in an ambulance being called out at least once, if not twice, a month. The paramedics had never heard of any of my conditions; they had to learn on the spot and stabilize me the best they could before transferring me to the hospital. My family have nothing but three years of positive thanks for the paramedics we have come into contact with.

Whilst I lie seizing on a trolley, unconscious in a hospital because my brain cannot deal with the pain my movement disorder is causing; it is the Junior Drs that 9 out of 10 times provide the treatment. They are not yet stuck in rigid textbook ways, they want to learn and get stuck in with my non-compliant body, trying everything they can think of.  They have gone above up and beyond for me.

My neurologist has scheduled appointments at 5pm but not seen me till gone 6pm. He could have sent me home; he could have had me booked into another clinic or requested a member of his team see me. However, he stayed on into the evening to treat me, he spent more time than he needed listening and answering my questions. His clinic had long since closed but he always makes time for those who need it, I have not once seen him turn a patient away due to the time.

So you see Mr Hunt, I have experienced a fair section of the NHS services over the years. I have had scheduled appointments and I have been rushed into resus by ambulance at 3am on a Sunday morning. They are already providing an incredible 24/7 service, instead of cutting budgets and debilitating already struggling hospitals, try enabling them for a change!

Posted in Archive, October 2015

Winter Precautions

Posted on by dystoniaandme

If you had sat opposite me and my friends on the bus yesterday chances are you would not have had a clue there was anything wrong with me. When I shuddered, and my friends asked in hushed tones if I was cold, you would not have paid a second thought to it. In reality that shudder was my body trying desperately to twitch but failing due to the injections, my friends whispered question was simply because they know that the cold aggravates my Dystonia. I currently walk around Oxford like a human marshmallow, swaddled in layers, with my gloves, hat and scarf on. My joints are already painful most days. I compensate for this though, my bedroom generally feels like a sauna.

Winter is coming. For many Dystonia, EDS and other spoonies winter impacts their chronic illness, causing spasms, pain flares etc. Managing your symptoms gets harder and if you’re anything like me and run head first at every challenge your condition presents, then you’ll find that with winter you’ll crash and flare more often. Symptom diaries are a fantastic tool to keep. Learning what you can do to keep on top of your health is the best approach you can take.

I know that in winter If I go out with no gloves and only one pair of socks, I am going to spend the day apologizing to all the people I pass in the street as I’ll accidentally hit  them when I twitch. It’s humiliating, and avoidable if I just remember to wrap up. If my room gets to cold I know I shall spend the night in agony with my body spasming. Again this is avoidable. I may not be able to prevent every single spasm, but I can definitely prevent the worst of them by taking sensible measures.

So please all you amazing spoonie warriors, wrap up this winter and don’t put yourself at risk!

Posted in Archive, October 2015

Using My Wheelchair At Uni

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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.

Posted in Archive, September 2015

Settling In With Spasms

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It’s the end of my first week at university already and I love it here. I spend the majority of my waking moments laughing with my peers and attempting not to get lost. One of the joys about university is the simple fact that I am surrounded by a large increase in people, and this naturally means that there is diversity amongst the student body. Every day so far, I have met someone with a different type of medical condition. This has really helped me to relax and settle in.

12032298_762857283840053_87691901_nTypically my Dystonia hasn’t left me alone but I haven’t let that bother me too much. I twitched the other day and caught a police officer, who luckily was more concerned that I was okay than anything else. Truth be told I was torn between being mortified and trying not to laugh. I was simply embarrassed to the point of laughter. My new friends and flatmates have all seen a couple of spasms now and have handled them really well, mainly with laughter which is all I could hope for.

I phoned the Neurology hospital that I attend and they still have no idea when my next lot of injections will be, which is causing me some concern. My injections are due on 30th September, this would have been the seven week mark so was pushing it as it was. Unfortunately the hospital staff still have no dates to give patients as to when the injections are going to be. My spasms are unfortunately already beginning. My arm never really completely stopped spasming during this cycle. I am keeping my fingers crossed that I get will my injections date sooner rather than later.