Posted in Archive, February 2015

Beyond The Abyss

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When I left university, I didn’t have much hope. I associated my midwifery training, the potential that it held, as a measure of success in life. Being unable to physically do the job anymore because my brain didn’t want to cooperate with my body left me feeling like a failure. For a while I didn’t particularly want to do anything but curl up on my bed and cry. My university was fabulous, they held my place moving it all the time for me, but I think we both knew I was too ill and in denial. I was grieving for a life that I wanted more than anything, I’d had a taste of it and I didn’t want to give up and let go.

After a period of feeling sorry for myself and being angry, I began to realise I had two quite simple choices. I could continue the way I was going, I could be bitter and resent myself for having an illness completely beyond my control. I could allow myself to continue in a downwards spiral, enabling the bleak abyss inside me to take over. Or I could snap out of it. I could pick myself up, slap a smile on my face and fight. I’d never gone down without a fight before why should now be any different?

In all honesty this choice is one I have had to remake several time over. Finally admitting to myself at the beginning of this year that the Dystonia being so generalised was going to prevent my Midwifery dreams was a difficult but positive step. For over two years I have fought in every way I can to continue having a normal life, I have studied, done charity work, attempting to find some way of finding even a glimpse of the fulfilment that I felt on my Midwifery course. Qualifying as a Reflexologist sparked something in me, I enjoy it thoroughly, but I am limited in my practice due to the Dystonia. My creative writing A Level though I love with a passion, reading and writing are two of my favourite activities. Studying them, well that’s just fun for me!

Last Friday (20 February) an article I wrote for Cosmopolitan went up on their website. For the first time in such a long time I felt a sense of achievement and fulfilment. I wanted to yell from the roof tops. I never thought I would see the day I would have an article on Cosmo’s website. I’m rather tempted to frame it. This experience has given me such a boost, it’s shown me that despite having Dystonia tuning life upside down and giving it a good old shake, I can still do whatever I put my mind do. It has been very empowering and a much-needed wake up call. Feeling full to the brim of nervousness, excitement, and joy; showed me that writing can give me every passion filled sense that Midwifery did, I just have to push myself. Dystonia can try to stop me but it won’t manage to.

If you want to check out my article please click on the following link http://www.cosmopolitan.co.uk/love-sex/sex/a33626/sex-questions-disabled-girls-are-tired-of-answering/

 

Posted in Archive, February 2015

Disabled Dating; A Taboo?

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Back in 2012 when I first became ill I was in a long-term happy relationship, however my partner at the time did not deal at all well with my disability. He soon ended our relationship. At the time I had not given a moment’s thought to the difference between dating when you’re able-bodied and dating when you’re disabled. The reason for this is because to me I have always believed that it is who you are on the inside that counts, to me it does not matter if you have one leg or six!

My views however are that of a minority of people’s it would seem. Whilst people are happy to get to know you, anything beyond friendship would seem to be forbidden. To many it is just too embarrassing to be romantically linked to someone disabled, simply because we differ from the norm. This idea, to me, was reinforced when several months ago I was approached by the TV programme The Undateables, to see if I would be willing to take part in their show or if I knew anyone else disabled who would. At the time I turned down their offer appalled that I was considered undateable simply because I am disabled. However now I sit here considering whether I was wrong to turn them down so quickly. Isn’t hindsight a wonderful thing? After all I have been single for two years now.

An able-bodied person is much more able to go out and socialize and meet new people whether that’s at a club, restaurant, coffee-house etc. They have much more freedom and accessibility to choose to do this. I would love to meet new people. However take for example the fact that  I have no control, currently, over my left arm, I could hardly go to costa and have to apologise every few moments for hitting someone! I know some of you may think Online Dating to be the perfect solution. For some people I won’t deny this may be a fantastic idea but not for me, as it doesn’t take away the above issues which often can put people off when you inevitably meet. I want potential partners to get to know my personality and learn to dodge to my spasming limbs at the same time.

Society’s view on disabled dating is a hideous one. If two disabled people date, or marry, they tend to be rather harshly judged. You often hear and read comments on how they are unable to care for each other, or if they choose to have children that the child’s needs will be neglected as the parents will be unable to care for him/her. These views that are often voiced loudly and publicly are completely ignorant. The owners of these opinions in nearly all cases have never met the people involved so cannot make these judgements.

Able-bodied/disabled couples are also criticised. When out in public a lot of people will presume that the able-bodied partner is a nurse/carer/sibling. They rarely come to their own conclusion of the actually reality of partner/date. Again these relationships come under fire, especially online where people state that they should not get together as the able-bodied person will just end up being a carer. These opinions have been voiced with what I expect to be no insight.

I’d like to question these people who claim us disabled people cannot date either able-bodied or disabled persons. I want them to imagine they became ill and could not be cured. What would they say then?

Naturally I defy these naysayers.  I believe that I’ll get my fairytale ending, just with a few more spasms, falls and laughs than originally expected!

Posted in Archive, February 2015

Out of Control

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I’m not sure where to begin. There is so much pain and if I am quite honest it is making everything extremely cloudy. After months and months of being seizure free I think today I had one, the memory loss that I seem to be experiencing confirms it. The devastation this causes is hard to put into words. I’m scared to leave the safety of my bed in case I have another, as one fall will be all it takes to pretty much guarantee an ambulance trip to the local hospital. After spending the last two days there (one planned trip, one unplanned), I don’t particularly fancy going back again so soon.

One of my Dystonia symptoms is a strong twitch/jerk, in my left arm. It flings my arm out rather violently to the side, it is completely out of my out of my control. This has been controlled by 3600mg of Gabapentin for the last two years but this no longer seems to be enough. It started off with just my shoulders jerking, I should have gone to the Drs then but instead I ignored this symptom. It’s got to the point now where my arm is flinging itself out to the side every few minutes with such a force that it causes horrendous pain when it collides with something, which it often does. I have had to resort to wearing a splint on my wrist to protect it as it had become rather swollen from the several times it has hit door frames, walls, hospital beds, etc.

 

My GP has decided to up the amount of Topiramate I take, which is an old antiepileptic medication to see if that will help. I take Topiramate to control my migraines but as my GP pointed out old antiepileptic medications such as Topiramate and Gabapentin often have many uses. So fingers crossed it works as I’m really struggling to cope. In all simple truth I just want someone to hug me but as I told my mother earlier I’m to scared to let her do so incase I hurt her.

I’m scared of my arm, the pain its causing and how my body irrationally responds to pain. This situation is impacting my life already – I daren’t walk into a shop now I’d break their stock – and I refuse for my life to be put on hold yet again! I really hope my little Dystonia Alien can hear me. I hope he is trembling in his tiny boots. As eventually my fear will give into rage, and I sincerely hope that the Alien has the sense to uproot and leave than do battle with me yet again.