Tag: dystonia

Posted in April 2016, Archive

Inpatient Program So Far…

Posted on by dystoniaandme

I am currently an inpatient at The Royal National Orthopedic Hospital Stanmore on a rehabilitation and pain management program. I have just started my second week and so far it has been an interesting learning curve. The program has many components to it which all relate back to pacing. It would seem that after four years of my neurologist stressing to me the need to pace my life I may finally be learning – but don’t celebrate yet, it’a slow change but I’m getting there.

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Morning Physio Exercises 

I have been really impressed with the course so far, the staff are fantastic. My assigned physio is fantastic and happily allows me to laugh my way through our sessions. Hydrotherapy has been my favorite therapy so far. The water provides resistance whilst enabling ease of movement in a relatively pain free environment. We had a session on foiling flare ups today, it’s rather reassuring to know that when I am discharged at the end of next week that I shall leave with a plan that shall help give me the tools to cope with it.

Whilst I am overall thrilled with the program and have been impressed with the therapies provided I cannot help but be tickled with the kitchen. So far everyday I have explained that I am allergic to X, Y and Z, and everyday I have been served food that I’m anaphylatic to. Ironically the hospital won an award last week for their catering…

Posted in Archive, March 2016

3 Weeks Rehabilition Program

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After a year and a half of waiting tomorrow I am being admitted into The Royal National  Orthopedic Hospital Stanmore for intensive rehabilitation for my Ehlers Danlos Syndrome Type Three. I am a mix bag of nervous and excitement. From talking to previous inpatients  of the program it sounds extremely positive and successful. There are many different components to the rehab, such as hydrotherapy, physiotherapy, pain management and sessions with psychologists. On the most part I am very optimistic, my consultants all feel that the treatment should offer significant improvement.

The only part of the program I am wary about is the psychology sessions. If I could opt out of these I would.  Now I shall be sensible and fully cooperate with them but I can’t help my reluctance. I have had years of sessions with varying types of psychologists. Since I have been ill I have had specific sessions with cognitive behavioral therapists to attempt to control my seizures, however out of the three therapists I have seen only one has looked at me holistically. Due to this my file now contains a note from my neurologist instructing therapists not to focus on my past and informing them it has no impact on my medical situation. Click on  VLOG and blog for more info. However, many therapists choose to ignore this. Whilst I am sure the psychologists I am going to be seeing over the next few weeks will be lovely, I worry that they will be like the many I have seen before.

I get admitted at 8:30am tomorrow morning, so it’s not long to go now. My neurologist is convinced it will make a huge difference to my jaw and I’m keeping my fingers crossed he is right.

Posted in Archive, March 2016

Date & Sex Debate…

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One of my favorite comments on social media recently stated that they loved my recent blog post but when would I be posting another dating failure as they tickled her. Well here you go! Indulge and delight in my rather hideous taste in men.

This happened before Christmas and there are so many aspects of this date which were hideously embarrassing. This is one of the few dates that I have cut short, after simply losing my patience. It was a first date in the middle of the afternoon over coffee. After twitching and rather violently hitting the wall behind me I felt like I should explain slightly further my left arms unpredictability. “So like, if you twitched and hit me during sex, does that mean I get to spank you?” What should have been a two-minute discussion before returning back to normal pleasantries resulted in a passionate, at least on my side, debate on why it was not okay to ‘punish’ me for twitching.

Now I have no issue with people being into kinky bits and bobs in the bedroom, if that’s what you like then go for it. However, don’t you dare ever suggest that you should be allowed to ‘punish’ me for something that is completely beyond my control. I’m quite used to people bringing sex up on dates, normally they just want reassurance that I’m not going to turn around and say I cannot possibly do that. Which is fine, I am more than happy to have an open and frank discussion about it. What I cannot wrap my head around is that on a first date someone is willing to debate in a coffee shop the fact that I’m saying no you may not sexually punish me for being ill.

As you can imagine I made my excuses and left not long after it became apparent that he couldn’t see my view point.

Posted in Archive, March 2016

Salute to Benedict The Alien

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It’s Brain Awareness Week! Whilst I could whittle on to you about the many theories of how exactly the brain develops Dystonia, I figured I would just link you to The Dystonia Society instead as they have explained it in a far more efficient manner than I ever could. The Basal Ganglia theory aside, come Dystonia awareness week I’ll go into that some more. http://dystonia.org.uk/index.php/about-dystonia/dystonia-and-the-basal-ganglia.
Today I want to talk about my brain. Not brains in general, mine.

We are all unique individuals. A huge part of our individuality is our brains: they control our thoughts, motor process, emotions, impulses and so much more. They are the reason we have moments that leave us feeling like the next Shakespeare, and the reason we wake up some days look at our messages and question where on earth our sanity went the night before. After my diagnosis I loathed my brain with a passion that would make Hades quake in his fiery little boots. I was no longer ‘me’. I had new quirks that in all my nineteen years I had never met. I did not know how to love them, laugh at them, let alone tolerate them. Gritting my teeth and swearing out of my mum’s earshot was the best I could do for a rather a long time. It may not seem like the right attitude to have, but it’s what worked for me. I blamed my brain for why my life, which had been darn great up until that point, was crumbling around me. You could superglue me up as much you like, but there was no way the pieces were going to fit back in the same places.

These crumbled bits made a new jigsaw, and what do you know, four years on I have learnt to love my new quirks, love my brain and love every crazy aspect of my life again. My little alien has added another element to it, I’ll admit I still swear at it on a frequent basis, but I laugh far more than I did before. I am surrounded by positive people and I have barrels full of confidence that were worlds away when this little alien took hold and started to disrupt the signals bouncing around my brain. I’m always going to long to be ‘normal’, but I no longer view Dystonia as the alien that ruined my life. It’s now simply an uninvited house guest who is happy to provide entertainment for all.Invisible Illness, Chronic Pain, Chronic Illness, Lupus Awareness, Fibromyalgia, Endometriosis, POTS, Hypermobility, Quotes, Chronic Migraine, Chronically Awesome, Chronically Fabulous, Spoonies, Lupies, Lupus Warrior, Fibro Fighter, Epilepsy, Brain Aneurysm, Spoons:

Posted in Archive, March 2016

I’m Not Sorry…

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My blog post earlier in the week sparked conversation on social media which is something I love to see; it also got me thinking. When I inform a date/potential date that I’m ill, I almost always apologise. I don’t quite know why I say sorry. Perhaps it is because I know that I’m not exactly what you see, but who really is, or maybe it is an automatic reaction to help deal with the social awkwardness that I’m feeling and attempting to suppress. I am awful for stuttering out an apology whenever nerves take hold.

This is a quality of myself that I can control. A rather refreshing thought. So after a period of reflection I’ve decided I’m no longer going to apologise for my conditions. They are part of me, good and bad. If I can learn to see the humour in them, then others can too. That’s not to say I won’t profusely apologise if I spasm and hit someone, of course I will – then again I’ll also probably laugh.

I feel quite delighted with my decision. Taking another step, and embracing my alien just that bit more.

Posted in Archive, March 2016, September

Rushing Out The Door…Dating Disaster Three

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This took place about a month ago. I normally don’t get too nervous on dates; I don’t see the point in getting worked up over them. This was the exception to the rule. My nerves however were not because of the guy I was meeting, but due to the fact he did not know that I was ill. It was the first time I had agreed to a date without informing the guy beforehand that I am a walking talking accident waiting to happen.

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Ready for my date

We got off to a great start, sipping cocktails in my favourite bar. The conversation was flowing with ease, we laughed a lot and the odd pause was comfortable. Two hours in I found myself still unable to switch off to the fact he was unaware of my bodies failings. Several drinks later I finally worked up the courage to bring the topic to the table. My words were rushed as I stumbled over a brief synopsis of my conditions, my nerves reaching their peak.

His body language said it all, it was in complete contrast to his words. As I fumbled with my explanation he quickly went from leaning towards me holding my hand, to sitting bolt upright with his hands tightly folded in his lap. I pushed his posture from my mind, telling myself it was probably just due to the slightly uncomfortable nature of the wooden benches we were perched on. A ridiculous thought I know, but it was an easier one to deal with. He muttered a brief acceptance, waving his hands around, reassuring me that it didn’t matter what I had going wrong.

Minutes later, during the first awkward pause of the night, he downed the rest of his drink. Jumping up from the bench, offering to buy another round, he strode off before I could answer. I glanced down into my still half full cocktail, refusing to turn around and watch what I knew was taking place. I may be hopeless at dating but I’m not a fool. Knowing he was rushing out the door I didn’t want to humiliate myself by watching it slam behind him. This isn’t a common reaction, most pretend to be fine with it before cutting off contact, however this is not the first time its has happened. My options where quite obvious I could leave now and head home or I could finish my cocktail alone.

I love cocktails so naturally I stayed and finished it. It may have been an awful date, but hey, why waste a good drink.

Posted in Archive, March 2016, September

An Exciting Month!

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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

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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?!

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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.