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

Posts tagged ‘BBC Three Counties’

Celebrating The Fabulous in Spoonie Life

I cannot believe how quickly this year has flown by, it feels like just the other month I was curled up writing my usual Happy Christmas blog post. Looking back at my blog posts from the last year it has been a rather hectic emotional roller-coaster. My blog was set up to raise awareness in 2012, but rather accidentally for me it developed into a rather useful therapeutic outlet. For you guys that means whilst I do post the happy stuff, the negative is slightly more frequent. This is simply because life is unpredictable and the good, bad and the ugly don’t come in equal measures.

So to help end the year on a positive spin here are just a handful of things that have kept me smiling this year that wouldn’t have happened if I wasn’t chronically ill.

  1. January 2016 – After BBC 3 Counties found my Cosmo Articles and my blog I took part in a quick phone interview to discuss disabled dating and ‘The Undateables’. Having been approached by ‘The Undateables’ before I took advantage of this opportunity to express how labels such as the shows title really are not helpful when tackling social stigmas.12583607_824636114328836_1166901021_n
  2. February 2016 – I was invited down to the BBC 3 Counties studio to participate in a valentine’s day segment on dating and disability. I was extremely nervous but the humour I manage to find in my conditions meant that I had several great stories to tell. It was a surreal experience that received great feedback and really boosted my confidence.12695785_835851056540675_1209977806_n
  3. March 2016 – Finally I realised the importance of not apologising for being the way I am. My genetic makeup makes me who I am. So what if I am a bit of an oddball with misbehaving limbs? If you feel uncomfortable around me then take a look at yourself and your views first, because my genetic make-up isn’t something that can be fixed and I no longer feel like I have to apologise for it.
  4. April 2016 – After waiting just over a year I finally was admitted to The Royal National Orthopaedic Hospital Stanmore for a 3 week inpatient pain management program. I’d been extremely nervous about this, and if I’m being honest didn’t see how they could help me short of waving a magic wand. 8 months later and I’m still putting my pacing lessons into practice (I slip up now and then but on the hole I manage much better), and I have a flare up plan that works!
  5. May 2016 – this had been a hard month, between being assaulted and the Drs telling me they were pretty certain I had MS (turns out I don’t but that was a scary few weeks). I was pretty much at my lowest point here. Then at the end of May I was offered a preliminary contract with Britain’s Next Bestseller. Now sure I may not have reached publication due to not hitting the pre-order requirements but hell that was a confidence boost and a half. I had a publisher believing in my work and that’s good enough for me.thumbnail_Regan Final Cover (2)
  6. June 2016 – I was still being investigated for MS, but with a wonderful man by my side I was managing to take it all in my stride. I was starting to see the funny moments in being ill again rather than allowing myself to be swamped in fear.
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  8. July 2016 – This marked 4 years since I had had to leave my midwifery training. Usually  I would mope about and be quite tearful. This year whilst the sadness is still there I can smile when reflecting on it. For if I had never become ill all the wonderful opportunities I’ve had over the last 4 years would never have happened.
  9. August 2016 – my partner gave me a key. I think I just grinned for the rest of this month.
  10. September 2016 – I started my 2nd year at university. I’d survived my first year and am fortunate to be studying at a university that goes above and beyond to help meet my needs!
  11. October 2016 – I was pretty ill and hibernated for most of this month. The fact that I recognised this and took care of myself was a huge leap forwards for me.deacf0c45b71fe38bc45675bced94b07
  12. November 2016- I ended up back in the hospital for awhile. Nothing out of the ordinary in that respect other than the fact I have a huge fear of this particular hospitals neurology team. After being misdiagnosed by them before it was no surprise when I found them to be as pigheaded and ignorant as previous. The difference this time around was that I had the confidence in myself, and enough knowledge of my conditions to advocate for myself rather than allowing them to treat me incorrectly.15128841_1048302218628890_7420253256398203646_o

Everything that’s happened throughout the year whether big or small has been impacted by my health. Previously I would have told you that was awful, I wish I could be ‘normal’; whilst yes I’d love to be healthy, I cannot deny I have an exciting fun filled life that if I wasn’t a spoonie would have been drastically different.

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Happy 4th Birthday Blog

Can you believe that today is the fourth birthday of Dystonia and Me? It is astounding just how much difference another year makes. My battle with Dystonia and my other conditions is one that for a long time I have felt I was drowning in. It has seemed like a constant tug of war, desperately trying to stay on top of my symptoms. For many years it seemed to me as if my little alien was always ten points ahead of me, and I was treading water trying to regain my lost control and catch up. Today I can quiet firmly say I am miles ahead of my alien, I am now basking in the peace of coping.

I’m not saying that I don’t have my down days, there are plenty of days when my spasms, seizures and dislocations just seem too much. However, what I am achieving makes those days worth while. In the last year I’ve completed my first year of uni, managed to live a life so full that it’s been beyond my wildest expectations for myself, I have been nominated for an award, interviewed several times by the BBC Three Counties, and I have had a blog post censored (which is why if you’ve been looking for the last one you have been unable to find it). I’ll let you guess as to which one of those I am most proud of.

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When I started blogging it was to raise awareness of Dystonia, in a short period of time it has grown to encompass a whole host of conditions that I live with. In 2012 when I created Dystonia and Me, I had hoped a handful of people may read this site and learn something new that could have the potential to help others. I never expected this blog to become the lifeline that it is for myself. Blogging my experiences, good and bad, has enabled me to accept my complications and learn to love myself again. Through this blog I have come into contact with incredible people who I admire greatly.

If you had told me a year ago I would be writing this, I would have laughed. I was so caught up in my worries and excitement about starting uni that I never thought to think what could possibly lie ahead. Who knows what will happen in the next year!

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

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.

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