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

Posts tagged ‘disability’

Wheelchair Outings

Over the last few weeks several of my consultants have advised me to stick to bedrest and insisted I use my wheelchair if I choose to go out. With most of my recent trips out mainly being hospital appointments, this wasn’t too hard, and so I didn’t get too worked up about it. I will always be the first to admit that I’m not great at being in a wheelchair, it’s not the lack of independence that bothers me (as the whole point of the chair is countering how dependent on others I am), no my issue comes from trusting no-one, including myself, of being in charge of a wheelchair

These issues come from within, and anyone who has paid witness to my attempts to push myself will agree, I am awful. Spatial awareness and coordination are key components when nailing the art of wheelchair driving; skills I am lacking in. I am surprised shopkeepers don’t barricade the doors when they see me coming so as to preserve their stock. The most impressive incident was in New Look around 3 years ago, the domino’s effect I caused in the sale aisles was comedy gold. Due to my interesting wheelchair skills, I tend to presume that those pushing me will be just as awful as myself, resulting in many ‘please don’t kill me’ panicked expressions whenever they dare to venture near a curb! In my opinion wheelchair driving lessons should be part of the deal when being prescribed one.

Yesterday Damon and I moved into our first home together, so decided to take a trip into town this afternoon to pick up the odd household supply. We’re very lucky that the area we live in is rather flat, it couldn’t be more perfect, this means that I’ll be able to get out and about even when my conditions are severe, which is something that previously would have been impossible. Damon’s quite adept with the wheelchair (we’ve yet to crash in to anything), but that didn’t stop me from pulling hilarious terrified expressions repeatedly whilst we were out today.

 

Happily away from any curbs…reenactment of curb fears

When I was first prescribed my chair, although it provided me with freedom, I found accepting that I needed it hard. In my eyes, it was a reminder of what I was unable to do. Now when I look at it I automatically smile, my fear of it always provides so much laughter, and it enables me to do every day activities, something that I’m extremely grateful for.

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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.

Surreal Radio Experience

Today has been an experience to say the least. Whilst rushing around this morning attempting to persuade my non-cooperative arm into a jumper, I noticed I had a tweet from my local BBC radio station. I stood, gaping, one behaving arm in its sleeve, the other flailing through the air with a mind of its own. I’m not sure what I felt more, excited or nervous that I would ramble on faster than listeners could keep up with. Noticing this tweet a whole 40 mins beforehand wasn’t much prep time, but it wasn’t an opportunity I was going to turn down. As I discovered after a quick pre-interview chat, the show had decided to get in touch after reading my Cosmo article. The topic Disabled Dating, is one that many of you may be aware from my previous blog posts that I feel passionately about.

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It was fantastic to have the opportunity to discuss the stigma too often experienced because of disability. Whilst some people are absolutely fantastic, I’ve thrown my drink down my date before because I foolishly held it in my arm that spasmed; thankfully he laughed it off, others can be very closeminded and unwilling to consider the prospect of dating a disabled person. It was interesting to listen to George Dowell who was also on the segment and featured recently on The Undateables. Now don’t get me wrong, I haven’t changed my mind on the show. However it was thought-provoking listening to his experience.

If you fancy checking out the segment here is the link, the piece starts at 1h08, I come on at 1h16. http://www.bbc.co.uk/programmes/p03dsjr5

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!

Yesterdays Fantastic Session with my Personal Trainer

I am not the type of person who likes to sit around all day doing nothing, I like to challenge and push myself. Sometimes I do not recognise my limits and I push myself to far but I would rather try than give up. Yesterday I had a session with my personal trainer. Despite feeling ill and having awful spasm for several days I decided to go ahead with the session as I felt slightly better. I am so glad I went ahead with the session as it was incredible.

At the start of the session I was a bit worried as we were going to try to do boxing. I was concerned that my arms would act up and that I would have a lot of spasms, however I will never let my Dystonia stop me from at least trying to do something, because if you never try then you will never know what you are capable of. It was the most fantastic session as my hands did not spasm once! I had a teeny tiny arm spasm that wore off very quickly, but I don’t really count that.

I still feel like I am still on high from the session, it was extremely therapeutic as well as a good work out. I am completely astounded at how well my limbs behaved, it has filled me with joy as it was a fantastic achievement. My arms were not to great later in the day but I did not care as I felt like I was sitting on top of the world.

As an able-bodied person I never tried boxing, I brushed away from the idea of it, declaring that my lack of coördination and my ‘girlie’ attempts would be embarrassing. So I am actually rather thankful that because of my Dystonia alien I got to try boxing out. It was an amazing experience, and I don’t think my punches were ‘girlie’ at all. Over the last few sessions I have realised that I am stronger than I thought.

I feel extremely lucky to have found a personal trainer who is not scared of my condition and who comes up with inventive ways to get me working out e.g using a crutch with him putting resistance through it to do a chest press. Without his fantastic help I am sure that my spasms and my body would me in a far worse state than what they are at the moment. His work outs keep my body moving, which helps give me that extra bit of mobility. His help has given me such confidence in myself and my ability to deal with my spasms. I never thought I would enjoy working out, unless it was on a horse, and now I love it. I love my daily work outs and I am always looking forward to my weekly session.

I know each Dystonia patient is different but I would defiantly recommend looking into a personal trainer to see if they can help you. You may or may not benefit from it, but if you never try you will never know.

Hospital appointment & My views on the majority of Doctors I have met

Every time I attend a Doctor or Hospital appointment, I go with a calm, polite manner, banishing the memories of the countless impolite Doctors I have met before and hope that the one I am seeing will be a good listener and polite. Yet 97% of all the Doctors I have met have squashed my hope.

Yesterdays appointment was not for Dystonia, however Dystonia still managed to impact it. It started like all Hospital appointments, I waited to be called through and when the Consultant did call me through he seemed to be polite. This helped up my hope for a nice Consultant. So you can imagine how devastated I was at the end of the appointment, when I left wanting to tell him exactly what I thought of him (I refrained from this and kept up my polite attitude). Through-out the appointment he talked over me, consequently he ended up having to ask me the same question 4 or 5 times, as he never let me say more than 3 words before interrupting. He made me feel like a complete inconvenience and that the procedure he would have to carry out at a later date was even more of an inconvenience.

This feeling was proven to be correct after I expressed my concerns that the procedure may set off a Non Epileptic Seizure or a spasm, to this he replied “Well, we shall to give you a small sedation in your hand before hand. I cannot see why we have to, it’s rather inconvenient”. I immediately apologised and explained I was not trying to make things difficult for them, I was simply expressing my concerns as I did not want to turn up on the day and then the procedure not be able to be done because I had a seizure etc. However I do not think he listened to a word of this, as he went on to keep expressing that the 3 changes that had to be made were a huge inconvenience for him. He then expressed that he felt the issue I had suffered with for 6 months was most likely not serious, this was great news, however he then implied that he considered that whatever was going wrong in my body to be due to my weight or my disability by saying “it would not surprise me in someone like you”. Now I understand that he most likely was not trying to insult me however to me that came across as a dig at either the fact I am overweight or the fact I am disabled.  The appointment just kept going down hill from there.

Now I understand that not all Doctors are like this, and there are some who are genuinely nice people, who want to help you, such as my Neurological Consultant and my GP. However the majority of the Doctors I have met are arrogant, insensitive and extremely bad listeners. These traits that do not go well for a Doctor. Even if you do have these traits surely you could at least act like you were listening and wanted to help! I am fed up of Doctors talking to me as if I am not a human but just an illness, or not listening to me etc. I am a human, I have feelings and I deserve to be treated with respect. I would not dare to be disrespectful to a Doctor, or insult them, so why on Earth should I be expected to put up with it??

I know from talking to many people, all with different types of conditions, that running into these types of Doctors/Consultants is becoming a frequent issue. I have seen patients leave appointments in floods of tears. On placement, there were occasions where I was left to deal with the patient myself, and calm them down after they had seen their Doctor. This is not right! A person should leave an appointment, feeling like they have been listened to and that their Doctor is going to try and help them.

It is terribly sad that the Doctors who care seem to be so few and far between. I count myself to be extremely lucky to have two that actually want to help me, who listen and respect me. They truly are outstanding in their profession  Every Doctor should take a leaf out of their books. I can only hope that with time, Doctors start to change, that they start seeing patients as vulnerable beings who have come to seek help from them and not as inconvenient illness that has been shoved in front of them.

 

Positive Proactive Progress!

As I sit here, beginning another blog post that allows you all to witness what it is like to live life with Dystonia, I must admit that I have an almighty smile spread across my face. The last few days have each been perfect in their own ways. I spent the whole of Tuesday in bed recovering from Mondays lovely trip to Chelmsford. To some of you this may seem lazy or even a waste of a day, so let me reassure you this was completely and utterly necessary, I barely had the energy to sit up! Yet I was perfectly happy due to the fabulous day I had the day before. I am also enjoying some lovely choccies that my man brought me for Valentines Day.

Yesterday one of my oldest friends came to visit me. I had not been able to see him, in a long time due to me moving to Essex for university and us both being broke students. So it was fantastic to have a really good catch up, which was full of laughter. By the time he left, my spirits were soaring. Socializing does the world of good for me, it allows me to feel ‘normal’. He has promised to come and see me more often, as now I am only a 20 minute bus ride away from him. I shall hopefully see him again in just under two weeks time.

Today I had my riding lesson. Once again it was fantastic, I love the thrill riding gives me. There is nothing like it. The horse I ride, Connie, is so very lovely and patient, and puts up so well with my different style of mounting. We did lots of trotting whilst weaving in and out of cones today, which I loved. Towards the end of the lesson, with my instructor watching carefully, I stood up in my stirrups, whilst walking. I managed this fairly well, now and then my right leg would decided it had had enough and would shoot forwards, causing me to sit/drop back down into the saddle. However every time it relaxed again I stood straight back up. We did the exercise repeatedly until my right leg really had had enough and I lost the feeling/connection to it. Riding is not on next week as it is the local school’s half term holiday, so I am counting down the days until the 28th when I can go back.

Yesterday and today, I attempted placing my foot on the floor to see how it would react. When it was placed flat on the ground, it spasmed rather violently, and I had to wait a fair while for it to calm down. Once it had, I tried it again, though this time I only placed my toes very lightly on the ground. This time there was no reaction. This is good progress!!! I plan on doing this a few times a day, if this all goes well then in a weeks time, I shall attempt to put my foot flat on the ground again. I hope if I keep trying this, then I shall be able to get back some of the movement I had managed to build up back in December.

This week has truly been fantastic. With only one real hiccup,  my right hand decided it had had enough of me writing and decided to spasm violently. I happened to be holding a fountain pen at the time, so ink ended up all over my face, hand, quilt etc. However I found this to be quiet amusing.

I have several more brilliant days planned, which I am really looking forward to! I know that I am going to be completely exhausted by the end of it all and my body will most likely try to get revenge, however it is worth it! I have accepted that at this time because I have Dystonia and Non Epileptic Seizures, I am disabled, however I refuse to let these conditions control my life. I am going to live life the best I can, and I shall enjoy every second of it.

Just watch me!

 

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