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

Archive for the ‘March 2016’ Category

3 Weeks Rehabilition Program

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.

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Date & Sex Debate…

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.

Salute to Benedict The Alien

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:

I’m Not Sorry…

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.

Rushing Out The Door…Dating Disaster Three

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.

An Exciting Month!

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!

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