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Posted in Archive, March 2016

Date & Sex Debate…

Posted on by dystoniaandme

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, 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

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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, 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, September 2015

Another Referrel

Posted on by dystoniaandme

Eye-chartSitting back in the upright, green leather chair, I stare straight ahead at the wall with my left eye covered up, where supposedly I should be able to see two rows of letters. I can’t see a thing. Not even there outline. I can see a white blurry box on the wall but that’s about it. The optician is quite frankly horrified at the deterioration of sight in my right eye. It has only been eight months since my last appointment, this dramatic result shocks us both. I thought my glasses prescription just needed a slight tweak. As it turns out new glasses cannot fix this issue. By the end of the examination she murmurs a simple sentence that chills me. “I need to refer you to the hospital, the muscles in your eye are not working properly”. What?! This was meant to be a routine appointment.

I questioned whether it could be my Dystonia, and while it was a possibility, she was not convinced it was. She explained the three different medical specialists I would most likely see at the hospital, the last being a neurologist. It always seems to end up there.Can I just have a new brain? As it always goes with these things it shall most likely be a wait before I am seen. In the meantime the possibility of another intruder controlling my body, my sight, hangs in the air. If it turns out to be Dystonia then other than piling me with more medication there is very little they can do, as they are unable to inject these particular muscles.

Over the years I have always been told that my left eye has compensated for my right. Its doing this now more than ever. With both uncovered I can see, things get blurry now and then but generally I’m okay. Cover up my left eye and the words in front of me are blurry, I cannot even focus on my own hands! It’s times like these that I want to take the faulty parts of my body out, line them up and just yell at them. Realistically I know it’s not going to get me anywhere, I’ve also banned myself from googling my symptoms, I know it will just tell me I’m  going to die, it’s one of the things google does best! I’d rather wait for hopefully a much more optimistic diagnosis from a Doctor.

So I’m keeping my fingers crossed that it’s not the Dystonia, and that it is a condition that they can easily treat! It would make a nice change.

Posted in Archive, September 2015

The Ballet of I’m Fine

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I’m very aware that today’s blog post may come across as me being grumpy, I assure you I’m not! I’m quiet cheery really. However I want to discuss a certain topic that is often glossed over when it comes to chronic illness. I like to refer to it as the Ballet of I’m Fine. We sufferers are experts in the dance, but it is one that we resent pirouetting to with a passion. Too often I see across the social media platforms people airing their feelings at having being cast in this ballet once again. But what else are they to do? Far too often we are acutely aware of people not wanting to know if we are anything but fine. It does not matter to them if our limbs are hideously distorted due to spasms, if our speech is slurred and our sight impaired. They are willing to blindly over look what they can see in front of them, as long as we dance the same old dance.

Well, why should we?! Let’s be honest here people, my ballet shoes are hardly ever worn, I air my illness through my blog. Yes I wish I didn’t have my conditions, but I do and I’m doing my best to raise awareness and carry on with life. So please excuse me if I retire from the Ballet of I’m Fine all together. I have been guilty of smoothing over my illness before to people I know would rather not hear about it. But enough is enough, the dancing shoes are going in the bin.

Chronic illness is not something to be ashamed off. We should not be living in the shadows with life passing by. So we are slightly different, we are unique. That simply makes us interesting. Instead of staring at me in the street, I would much rather you politely inquired as to what was wrong. I would love the chance to educate more people on the condition.

To you folk who care enough to truly listen to how we are holding up, you don’t know how amazing you are!

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Posted in Archive, June 2015

Judging When To Get Checked Out

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Saturday evening, after a drizzly but fantastic day spent at Ascot racecourse, I found myself lying on my side in the living room in a fair degree of pain after my hip gave way. After a quick feel I was certain that it hadn’t dislocated and the fact I had remained conscious and had not slipped straight into one of my seizures reassured me that nothing too untoward was at play. However my hip, when not spasming, has never been the reason for me falling before, so the fact I was not seizing I felt could not be 100% relied upon. Perhaps my brain had functionally paralyzed that part of my body? Even momentarily, would have been enough, after all my hip had caused me increasing amounts of pain all day.

I still don’t know why this happened. After spending a couple of hours on the floor we eventually got me to my room, and I spent the following day, on bed rest, taking plenty of regular painkillers and ant-inflammatory’s. It is only now on Tuesday that I am walking around without as much discomfort, though I’m still taking regular anti-inflammatory’s. One of the issues I often find with my myriad of medical conditions is judging when to get arising issues checked out. With my bones I usually go by whether the complaint is swollen or not, this is on the advice of a plastic consultant, due to my EDS. However when it comes to the rest of my conditions it can be pretty hit or miss.

When I end up in Accident & Emergency, or when I’m at my GP’s, I often feel like I’m wasting their time because of how often I’m there. The best they can do is patch up the new issue; like sticking a fabric plaster on a cut before getting in a bath. It’s almost pointless because you’re just going to have to stick another one on when you get out, but for the mean time it’ll do. The reasonable part of me knows this isn’t the case, that I need their help and I’m extremely thankful for it. But whilst I’m there I can’t deny that’s how I’m feeling, especially when a lot of appointments involve me battling to receive treatment I need.

Judging when to get checked out is a minefield. So often I leave things until they have reached a point where I probably have made it worse for myself. This seems to be a common issue among people with chronic health conditions. Many of us have accepted that we are chronically ill and that we will have falls or spasms etc., we just don’t want to make a nuisance of ourselves or accept another symptom or injury.

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Posted in Archive, May 2015

Chair…Twitch…Floor

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When ill with any condition it can become very easy to allow yourself to be wrapped up in the negativity of it all. Recently I slipped, I fell off the positivity bandwagon if you will. I don’t think this slip is necessarily a bad thing. After all it is only natural that in life we have our highs and lows. Ironically it was Dystonia that reminded me to try and see the positive that does exist within and around the condition again.

My left arm and shoulder spasms/twitches rather violently, flinging itself out to the side. I always hope silently whenever this happens that nobody is within hitting range. I have had one to many awkward apology conversations following such a spasm. It was following a rather forceful one in a hospital Costa last week that I found myself out of my chair and on the floor, slightly stunned, sore and in a complete fit of giggles. A small part of me knew that one flailing arm had tried to grab the table, in a useless uncoordinated attempt to stabilise myself.

This incident was exactly what I needed to break the haze of negativity that I had cocooned myself up in since my Complex Regional Pain Syndrome diagnosis. I had forgotten to tackle this condition with the same approach I had the others. I was frankly too scared, I know how bad the pain can get and even though I am not at the same pain score I was in 09, mentally I jumped ship. Embarrassing myself by ending up on a busy Costa shop floor was the exact laughter filled wake-up call I needed. As much I crave a life without chronic illness, my Dystonia never fails to provide laughter, I’ll give it that much.

Posted in Archive, May 2015

Trauma & Dystonia

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Since I developed Dystonia in 2012 my past has been dragged up by varying Drs, repeatedly. I was physically and emotionally abused as a young teen for a period of a time, with the support and help of my loving mother and friends I managed to come out of this dark time as a positive, strong person. I had many years of counselling to help me put me put to bed that year of my life.

Unfortunately my GP loves to relive the past and enjoys rehashing old news. He has currently managed to convince himself that my ‘tragic past’ is the cause of my medical conditions, and that they are psychosomatic symptoms. In any other circumstance I would be upset at his words. However I have a lovely letter from my neurologist stating that my history of abuse has nothing to with my current organic symptoms!

I’m not sure why my GP has decided to ignore this letter, perhaps it is just because it makes life easier for him, after all I am a complicated mix of medical conditions but that’s no excuse for his current degrading tone and behavior. I can’t help but be concerned and wonder how many other Dystonia suffers are subjected to this behavior?!

I can only hope that as awareness for the condition spreads the attitude around it changes too.

Please check out today’s VLOG which is on the same subject https://www.youtube.com/watch?v=CJZz7_EMUtE