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

Posts tagged ‘blog’

Social Media Shocked By Attractive ‘Undateable’

Last night Channel 4 The Undateables aired again. How this show is still running is beyond me. Whenever it is on  social media is lit up with viewers making remarks that they deem to be humerous, but in reality are rude and disrepectful about the disability of the personality appearing.The shows title in itself represents the many issues with the show. As long as you label someone with a disability Undateable then how are you going to break down the barriers around it?

Today papers and social media are running mad with the fact that a young man on last night’s episode is a rather handsome chap. I’m sorry, but what?! Why is there an expectation in life that to be disabled you must be hideously disfigured, wheelchair bound etc. Some disabilities are invisible,  some of us appear ‘normal’. Shows such as The Undateables are doing very little to break down the barrier and stigma that surrounds people with health conditions of any type.

It is for this reason that I turned down their offer to appear on the show when they approached me; I sent them a detailed response explaining why, they replied by providing me with contact details for if I changed my mind. I stand by my decision now more than before especially after the response to lasts nights episode. It is appalling to see that society is shocked that disabled people can be attractive/Datable too!

But You Don’t Look Sick

 

12394480_804191833039931_1805113062_oWell first off thanks for the compliment! I work hard on making sure that I don’t look completely awful. The more my body is playing up the more care I take with my appearance; it cheers me up, and that’s one step towards having a good day. Mr judgemental Taxi man, I may not look as ill as you would like me to, but I was on the way to the Drs this morning because on top of all my chronic health conditions I had contracted yet another chest infection along with sinusitis. Yeah my immune system sucks. Infections on top of my pre-existing conditions are always detrimental and not something my body copes with well. I needed to get a prescription to nip it in the bud!1419509_804226453036469_22790295_o

What do you deem as sick? Do I need to be wheelchair bound, using a walking stick or screaming in agony? Some days that is me. There are days when my meds are not strong enough to control my dysfunctional body, where my body contorts and contracts into positions that you could not imagine. Would you believe I was sick then? Not everyone does. There have been healthcare professionals who have stood by debating over which symptoms are real and which are fake in an attempt to get drugs. This is simply because they do not understand my conditions, I do not blame them, it’s not like my brain has developed the common ailments after all. However taking a moment to listen to someone before making a judgement is not hard.

Next time you see someone who isn’t stereotypically ‘sick’, pause and think.

Laughter; Breaking Down Barriers

What would life be without laughter? My life was full of it before chronic illnesses decided to move in, but over the last few years I can honestly say I have had many more laughs because of my disorder. Twitched and accidentally hit someone, tongue spasms, fallen over because I spasmed and lost my balance; all of these scenarios result in laughter, it has become my natural response. Yesterday an acquaintance was complementing my ability to cope, she mentioned how she didn’t know how I continued to deal with my mix of conditions day in and day out, and still be able to laugh. Now I acknowledge that not everyone would deal the same way as I do, but I cannot think of another way to cope.
Should I be angry, scared, terrified at the unknown implications of my disorders in the years to come? I’ll hold my hands up; I feel all of those emotions regularly. However, the sheer ridiculousness of the situations I have ended up in thanks to my dysfunctional body has ensured that these negative feelings are not consuming. Laughing, breaks down the emotional barriers that I put up whenever fear raises its grey head, and the barriers that others put up when they don’t know how to respond to what they have witnessed.
It is natural to see me spasm and hit something and for you to feel unsure how to react. We live in society where everyone is so easily offended, that people silently look the other way attempting to un-see the abnormal. If I am giggling at the hilarity of the situation, and let’s be frank it’s a painful but amusing moment, I would much rather you joined in. Laughter allows us to talk about what we are experiencing, it is a fantastic way to spread awareness. I’ve had friends who have mentioned they feel wrong for laughing. It would only be wrong if you were laughing at me, not if you are laughing with me. Don’t over-complicate a beautiful thing.

Dear Mr. Hunt

Over the last few month social media has been aflame in reaction to your demand of a seven day week NHS, and dismissive and degrading attitude towards Junior Drs. For weeks I decided not to weigh in on the argument but as an extremely frequent user of the NHS I feel it right to raise my voice. I may sit here typing away and complain about yet another run in with my neurologist, but whenever I have really needed the NHS they have been there, 7 days a week, 24 hours a day!

For almost two years my condition was seriously uncontrolled, this resulted in an ambulance being called out at least once, if not twice, a month. The paramedics had never heard of any of my conditions; they had to learn on the spot and stabilize me the best they could before transferring me to the hospital. My family have nothing but three years of positive thanks for the paramedics we have come into contact with.

Whilst I lie seizing on a trolley, unconscious in a hospital because my brain cannot deal with the pain my movement disorder is causing; it is the Junior Drs that 9 out of 10 times provide the treatment. They are not yet stuck in rigid textbook ways, they want to learn and get stuck in with my non-compliant body, trying everything they can think of.  They have gone above up and beyond for me.

My neurologist has scheduled appointments at 5pm but not seen me till gone 6pm. He could have sent me home; he could have had me booked into another clinic or requested a member of his team see me. However, he stayed on into the evening to treat me, he spent more time than he needed listening and answering my questions. His clinic had long since closed but he always makes time for those who need it, I have not once seen him turn a patient away due to the time.

So you see Mr Hunt, I have experienced a fair section of the NHS services over the years. I have had scheduled appointments and I have been rushed into resus by ambulance at 3am on a Sunday morning. They are already providing an incredible 24/7 service, instead of cutting budgets and debilitating already struggling hospitals, try enabling them for a change!

Week 7 – Agony

imagesI’m currently on week seven of my Botox cycle. My injections are not being administered for another week due to a mistake (lets presume it’s a mistake and not my new neurologist being devious, because being frank I would not put it past him). I should be in bed asleep right now. Normally I would currently either be asleep or out with friends. Instead I am medicated to the extreme, I have lavender wheat bags heated up wrapped round my neck, and resting along my jaw and heat packs stuck along my back. To say I’m in agony would be an understatement.

I have resorted to taking Oramorph, a medication I try my best to avoid, however I would much rather give in and take it than have a seizure (click here to read what a seizure is like), and right now I’m concerned that with the amount of pain I am in that I will have one. My brain is not staying connected to my mouth tonight, functional paralysis is something I have suffered from for a few years now, but it has never ceased to terrify me. I understand that it is simply my brain being unable to cope with the amount of pain I am in, so it disconnects from the affected part but it is an unnatural experience that no matter how much I attempt to laugh off unnerves me.

Tonight my jaw is particularly bad, and is frequently being functionally paralysed leaving me unable to verbally communicate. It may seem like a small thing to some, but when you are trying to desperately to get any part of your mouth; whether that be your lips, tongue, just anything, to move and they won’t, apart from when they spasm, its horrendous.  I cannot yell for help if I need it, I cannot cry in frustration or call someone to talk too to distract myself. I am stuck with my jaw spasming, distorting itself in ways that should not be possible, threatening to dislocate, and all I can do is cry silent tears, pray that I do not have a seizure and use this blog as an outlet for my pent-up frustration with this crushing condition.

I have a 9am lecture tomorrow morning. Which I am determined to attend, most likely in a wheelchair for my own safety, one of my close friends has agreed to take me there which has helped put my mind at rest. For now it is back to attempt sleep and hope that my little Dystonia Alien allows me some rest

Saying Yes To Help

When I received my miracle unconditional offer from Oxford Brookes this year my mother and I ended up have numerous discussions on how I would manage on my own at uni. These talks mainly focused around the idea of having carers, 3 or 4 times a week, to help me with basic household tasks that some days are just too much for me to manage. At the time I was insistent on doings myself and put my foot down. I was determined to be an independent, strong, young woman who could manage all aspects of life without any help. Numerous other adults alongside my mother, pointed out that my mum would be right, university would be a reality shock, not only with an increase in work load but also with a huge increase in social life.

Needless to say I listened to what everyone had to say, I took it on board, and promptly carried on with my own plans. Not only did I want to be independent but I was also worried about the judgement I may face from my peers at needing care. My bedroom is rather large, which is great for days when I rely on my wheelchair, but I can easily overdo it by cleaning without realising it. I tried for two weeks before I resorted to carers. Giving in and saying “Yes, I need help!” was honestly the best decision I have made since being here. My fears of being judged and avoided like the plague where unfounded. There have been no drawbacks, just pure relief. I have more time and energy to put towards tasks that need doing for uni without having to worry about little things like hoovering.

My next task to tackle is pacing. For 3 years I have listened to my neurologist tell me to pace my life and stress the importance of it; and for three years I have simply nodded my head and carried on charging on. I have always been focused on the next achievement. It’s not taken me long to realise that tactic will not work for me here. Running on full steam will leave me having a flare-up frequently, which I simply cannot afford to be doing. It’s time to get my act together and learn the mysterious art of pacing…

Using My Wheelchair At Uni

12076411_769374493188332_1203309027_oToday was the first time I have had to give in and use my wheelchair at uni. I had anticipated that today would be harder than usual as I had traveled to London yesterday for my routine injections. My body always reacts badly to them for the first 24 to 48 hours, normally this leaves me in a lot of a pain and with an increase in spasms, which with a mix of painkillers and muscle relaxants I can manage. I therefore had not expected to fall over when getting out of bed this morning. My back and neck had gone into a hideous spasm and my brain had functionally paralysed both legs and my left arm. I spent half an hour lying on the floor like this, debating what to do. I gave myself an hour in which if I managed to get dressed I would venture to uni in my wheelchair and braces, and if I was still on the floor I would ring the Wardens.

I felt extremely proud of myself that it only took half an hour to get dressed this morning despite my brain fighting me, this must be a new personal best. I admit that as I braced the majority of my body I was extremely nervous. My peers are aware that I am ill, but they have never seen me like this, I had no idea how they or my lecturers would react. Within minutes of being in uni my nerves were swept away. Not only did no-one bat an eyelid, but people helped me when I needed it without me even asking.

Part of me had strongly wanted to not go in to uni today. I was worried of what others would think, and how I would physically cope, I had already had several draining days and was concerned that this on top would be too much.  I am extremely glad that I took the leap, and forced myself to go. It will help keep my mind at rest the next time my brain decides that a day of alternating between spasms and paralysis would be fun.

Another Referrel

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.

The Ballet of I’m Fine

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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Dystonia; Becoming A Student

When you hear the word university student what do you picture? I’m sure that many of you conjure up an image very similar to my own. One of students sitting in a small dingy  flat knocking back a stomach churning concoction from a mix as part of a drinking game; or stumbling back, shoes in hand, giggling from yet another night out. My ideas are based on experiences from my year at uni in 2011/2012. Whilst planning my return to university my mother and I have had many discussion on student life and how sensible I’m going to have to be this time round.

I have struggled to get my head round the fact that frankly I do not have the stamina I once did. My medication, spasms, and pain levels all have an impact. Now that’s not to say I can’t have a night or two out. I just cant do it back to back every night of the week. If I did I would be a spasming wreck and back in the hospital in no time. Whilst mentally I am the same old Becca, physically I am much weaker and more disabled than when I was last at uni. When I was last a student I was not battling Dystonia, I did not know then what it was like to lose control of your body like I do now. Although my condition is well controlled, it’s still up and down. I know when I’m on muscle relaxants I can’t drink, so my body will force me to be sensible every 6/7 weeks when my injections are due. The rest of the time will be down to self-control, and learning what works for me. Prioritising is key to making sure that I am well enough to attend lectures, and doing the studying that is required etc.

I have not lived any element of a student life since becoming ill. It will be a big adjustment process, which I will have to catch on to quickly. As my moving day creeps nearer (24 days) my nerves increase. I’m anxious to take this next step but nervous at just how much of an impact Dystonia shall have. However I am aware that as usual I am worrying over something that is outside my control, there is nothing I can do but enjoy my time at university and handle my spasms with my medical team as they come.

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