Tag: Conditions and Diseases

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, February 2016

Young, Single & Disabled. . . So What?!

Posted on by dystoniaandme

I’m extremely open about my disabilities, which is why I agreed to take part in an interview last Sunday with BBC Three Counties Shrink Wrapped. I had a great experience down at BBC Three Counties and you can check out the interview here http://www.bbc.co.uk/programmes/p03gt2ql#play. Whilst I was more than happy to participate as they provided me with a fantastic outlet in which to advocate, I cannot help but feel that if I was not labelled by society then I would not be finding myself in a position where I need to explain myself and my relationship status.

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The first interview I participated in, several weeks ago, did not focus solely on my romantic encounters, they wished for my views on topics such as The Undateables, accessibility and more. This weekend’s interview however was entirely spotlighted on my romantic life. Whilst I was at the time more than happy to answer these questions and discuss the matter, I did not expect to find myself afterwards analyzing my position.

The more I contemplate over why I am still single, the more I came back to the same answer; who really knows why they are single? It is highly unlikely that a person is single for one specific reason whether disabled or not. I firmly believe that there is a reason for singledom other than ‘there is something fundamentally wrong with you’. Perhaps you’ve not met that right next significant other or a hundred other potential reasons. It is true that genetically I am a mixed bag and my brain is at best dysfunctional but despite all this I do not believe this to be the only clear cut reason that I remain single.

The labels of single and disabled along with my age thrown in for good measure seem to inflict panic in society. It would appear incomprehensible to some that I would remain single and not just settle for anyone accepting of my conditions. Whilst others view my marital status as a sad but unavoidable fact because let’s face it I’m not a genetic jackpot. Now I’m not denying that I would like to find that significant other, but at twenty-three I’m in no rush. So if I’m not panicking about it why must everyone else feel the need to do so? I ask you though would any of you be at all interested in this if I was able-bodied, would you simply tell me that I am young and not to worry?

We apply these labels and these associations to people without stopping to consider the implications they may have. There should not be an expectation upon them to simply accept them. Whilst I may have embraced mine to a degree, I took it apart, examined it and used it as a way to advocate for myself and others with the same chronic conditions. The people applying these labels are not taking every aspect of the person’s life into consideration. They simply see a problem and apply an appropriate term, a way of enabling them to cope is the only way I can explain this. What they fail to see is the normal factors that contribute to that labelled personality. If they looked closer at me for example, they would see the mirid of dates I have been on in the last few months, or my interactions on a night out. I am in that respect in the same league as all of my able-bodied friends.

So if you don’t mind I’ll take your labels and carry on ignoring them. For now, I’m going to enjoy singledom. After all something great is worth waiting for.

Posted in Archive, February 2016, September

Disaster Date 1

Posted on by dystoniaandme

As anyone who checked out my latest VLOG will know, after a highly entertaining bus ride the other week with a fellow spoonie I have decided to blog more openly about the dates I have been on. Up until now I have kept them to myself purely because they didn’t go anywhere, however as this lovely girl pointed out to me, it’s the sort of the thing she would like to read. So I’ve decided to do a couple of blogs retelling these dates – the guy’s names and locations have been changed!

Just before Christmas a guy I’d met a handful of times in the local clubs and around uni asked me for a drink. Thomas knew I was ill, so in my eyes we had already passed the first hurdle. There was going to be no need for an awkward ‘so by the way I have a severely dysfunctional body, you cool with that?’, conversation followed by spluttering and murmured excuses into half-drunk cocktails. I was feeling far more relaxed than I usually would do, simply because I didn’t feel like I had the ‘disability burden’ to get out there.

It was the usual routine, pull every outfit I deemed to be flattering enough to wear on a date from my wardrobe, and then force my friends to pick the winner. It’s a wonder they put up with me really. Whilst I was spending so much time on my appearance, I did not stop to think about strapping down my left arm. The spasms in this arm have been the death blow to so many dates but I still don’t learn. After all, it just isn’t the most attractive look. If I had thought about how twitchy I had been that day I would have seen the disaster in my plan.

The start of the date was fantastic; we were sat across from each other in an adorable cocktail bar with scented candles everywhere. The conversation was flowing with pauses only for laughter. We seemed to connect, and after several more drinks decided to go for a walk. Tom was a gentleman and held the door open for me, as I turned around to thank him and make a joke I twitched. I don’t mean a little twitch either, it was the sort that leaves you feeling bruised. In typical fashion I caught him in the neck. If anything is going to kill the mood on a date, it’s that.

At the time I felt awful. I spent a good ten minutes apologizing before we decided to call it a night. As you can imagine we’ve not spoken since, I wonder what put him off?! Luckily I can see the humor in these situations as they happen far too often.

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

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, November 2015

Week 7 – Agony

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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

Posted in Archive, October 2015

Saying Yes To Help

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When I received my miracle unconditional offer from Oxford Brookes this year my mother and I ended up have numerous discussions on how I would manage on my own at uni. These talks mainly focused around the idea of having carers, 3 or 4 times a week, to help me with basic household tasks that some days are just too much for me to manage. At the time I was insistent on doings myself and put my foot down. I was determined to be an independent, strong, young woman who could manage all aspects of life without any help. Numerous other adults alongside my mother, pointed out that my mum would be right, university would be a reality shock, not only with an increase in work load but also with a huge increase in social life.

Needless to say I listened to what everyone had to say, I took it on board, and promptly carried on with my own plans. Not only did I want to be independent but I was also worried about the judgement I may face from my peers at needing care. My bedroom is rather large, which is great for days when I rely on my wheelchair, but I can easily overdo it by cleaning without realising it. I tried for two weeks before I resorted to carers. Giving in and saying “Yes, I need help!” was honestly the best decision I have made since being here. My fears of being judged and avoided like the plague where unfounded. There have been no drawbacks, just pure relief. I have more time and energy to put towards tasks that need doing for uni without having to worry about little things like hoovering.

My next task to tackle is pacing. For 3 years I have listened to my neurologist tell me to pace my life and stress the importance of it; and for three years I have simply nodded my head and carried on charging on. I have always been focused on the next achievement. It’s not taken me long to realise that tactic will not work for me here. Running on full steam will leave me having a flare-up frequently, which I simply cannot afford to be doing. It’s time to get my act together and learn the mysterious art of pacing…

Posted in Archive, October 2015

Using My Wheelchair At Uni

Posted on by dystoniaandme

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.