Tag: disabled

Posted in Archive, July 2015

Hydrotherapy

Posted on by dystoniaandme

Today I had my first Hydrotherapy session, this was the first in a course of six. This morning I found myself feeling a mixture of emotions. Part of me was incredibly excited, I previously had hydrotherapy back in 2009 to treat Complex Regional Pain Syndrome, and found it to be very helpful, so I know just how beneficial it can be. However I was also slightly nervous, I could not help but wonder how my quirky body would react to the therapy now. Would it set a seizure off? And if it did how quickly would the staff react? The one positive being, if I had a seizure, that the hydrotherapy takes place at my local hospital and the A&E staff know me very well.

The session could not have gone better. The pool was wonderfully warm which helped relax my rather achy muscles. Having the water support my joints whilst I did the exercises was great as while the water in itself provided a challenge, it also meant I could not hurt myself. For example whenever I twitched in the pool the water provided a resistance to my arm, slowing it down slightly and supporting it, which meant I didn’t hurt myself like I normally do. We had lots of laughs during the session, with my spasms ending up with me splashing my physio repeadedly in the face, and the floats that we had been using during an exercise going flying across the pool. It was great for it to happen in a safe, pain free enviroment!

Below I have put a sneaky photo (I was trying to avoid capturing other patients) that I took at the hospital earlier, it lists some of the benefits of Hydrotherapy. This includes pain relief, and reduction of muscles spasms. It shall be interesting to see if it will help with the spasms I experience! If you have had Hydro, feel free to drop me a line I’d love to hear your experiences.
11778988_739474566178325_838772252_o

Posted in Archive, June 2015

Judging When To Get Checked Out

Posted on by dystoniaandme

Saturday evening, after a drizzly but fantastic day spent at Ascot racecourse, I found myself lying on my side in the living room in a fair degree of pain after my hip gave way. After a quick feel I was certain that it hadn’t dislocated and the fact I had remained conscious and had not slipped straight into one of my seizures reassured me that nothing too untoward was at play. However my hip, when not spasming, has never been the reason for me falling before, so the fact I was not seizing I felt could not be 100% relied upon. Perhaps my brain had functionally paralyzed that part of my body? Even momentarily, would have been enough, after all my hip had caused me increasing amounts of pain all day.

I still don’t know why this happened. After spending a couple of hours on the floor we eventually got me to my room, and I spent the following day, on bed rest, taking plenty of regular painkillers and ant-inflammatory’s. It is only now on Tuesday that I am walking around without as much discomfort, though I’m still taking regular anti-inflammatory’s. One of the issues I often find with my myriad of medical conditions is judging when to get arising issues checked out. With my bones I usually go by whether the complaint is swollen or not, this is on the advice of a plastic consultant, due to my EDS. However when it comes to the rest of my conditions it can be pretty hit or miss.

When I end up in Accident & Emergency, or when I’m at my GP’s, I often feel like I’m wasting their time because of how often I’m there. The best they can do is patch up the new issue; like sticking a fabric plaster on a cut before getting in a bath. It’s almost pointless because you’re just going to have to stick another one on when you get out, but for the mean time it’ll do. The reasonable part of me knows this isn’t the case, that I need their help and I’m extremely thankful for it. But whilst I’m there I can’t deny that’s how I’m feeling, especially when a lot of appointments involve me battling to receive treatment I need.

Judging when to get checked out is a minefield. So often I leave things until they have reached a point where I probably have made it worse for myself. This seems to be a common issue among people with chronic health conditions. Many of us have accepted that we are chronically ill and that we will have falls or spasms etc., we just don’t want to make a nuisance of ourselves or accept another symptom or injury.

download

Posted in Archive, June 2015

A sea of Drs

Posted on by dystoniaandme

Today, as is usual for my six weekly routine, I went up to London to see my neurologist for my injections. I sat in the waiting room running through my list of questions with my mother “Whats the likely hood of the injections making my CRPS worse again? How likely am I to pass on HLA-DRB1 type Dystonia?” etc. The patient before me stumbled back out towards us all a flutter mumbling to her partner how she could not believe the Dr was leaving. The importance of my questions vanished. My neuro, my glimmer of light in a sea of Drs who drive me to the ends of my wit and leave me wanting to throttle them, leaving? I was vaguely aware of my mum pointing out not to get emotional until he had confirmed what I had overheard.

Sadly my neurologist is moving to another hospital where they do not run a botox clinic. He has asked that I email him regular updates, and has said that if things ever take a turn for a worse I just have to ask for a referral to him and he will see me. All this is extremely sweet and reassuring. I’d like to say I smiled and congratulated him, but if I’m honest I cried…a lot. It may seem like a small thing having to transfer too a new neurologist but when I first became ill I had several absolutely hideous neurologist who dismissed my symptoms. They blamed them on stress and my history of abuse, they refused to listen when I pointed out that I had become ill at a point in my life when I was the happiest I had ever been and had moved on from my past. My neurologist was the first to take me seriously and help me. I’m terrified of being handed over to another heinous consultant.

I have one more appointment with my Dr before he leaves, which will give me an opportunity to thank  him (without crying this time) for all that he has done for me. After that it will be the start of a new chapter, hopefully one just as positive.

Posted in Archive, June 2015

Mind and Body: Opposite Ends Of The Spectrum

Posted on by dystoniaandme

The difference between my mental and physical capabilities is vast. Dystonia has meant that my health has changed frequently and I have to constantly remind myself that just because I think I can do something doesn’t necessarily mean I can. Those who know me well, know that I tend to think well I’ll give it a go and if I spasm, then I’ll learn from it. Trouble is, my thought pattern then alters to well body, you may have spasmed last time, but if I do it again perhaps you will learn. It is not a smart way to deal with the condition; my neurologist really is a saint for putting up with me.

Mentally I feel no different to how I did before I became ill. If anything I am more determined to do things, to attempt to try to retrain my brain. It may sound slightly out there, but if you can desensitize nerves, then why not reteach the brain movements? I’m determined to get it through to my Dystonia alien, that twitching and throwing things just isn’t polite.

Over the last two weeks I have been far more active than usual. With my exams over and done with, and no revision needing to be done, I have filled my spare time with constant activities.  Part of me is aware of my neuros six weekly reminders to not overdo it. I know that eventually my body will crash and spasm far more than usual, putting me at risk of seizing. It would be far more sensible to pace myself, to do an allotted amount each day. To do this would make my Drs happy, but I doubt it would reassure anyone that I was any safer; friends and family would still be concerned about me. I would still be ‘ill’.

To live my life by allotted sensible slots wouldn’t make me happy. Burning out now and then hurts like mad and I always say that I’ll take more care next time…followed by a laugh because I know I don’t mean this. I love to be as busy as I can. I will never overload myself completely; don’t get me wrong I allow for plenty of down time, chilling with a good DVD, recuperating. But slowing down isn’t for me, I know I’m ill, my body gives me a daily reminder (when the Botox is wearing off) with all the walls I hit, the jaw spasms and mad blinking but I have a lot of living to catch up on. I plan to do just that.

Posted in Archive, May 2015

Adjusting to Dystonia

Posted on by dystoniaandme

When you become ill with Dystonia there are a lot of changes you have to make to your life. Mentally you often feel like you can still go out for that morning run, or dance the night away with your mates. The reality is extremely different. No two days are the same and spasms can cause simple daily tasks such as getting dressed to take hours upon hours.

Whenever I visit my Neurologist or my GP they both tell me to slow my life down and take things easy so as to give my body a bit of a break. They have been giving me this same piece of advice for over two years now. I know I should take their advice on board. After all they would not repeatedly tell me it if it was not necessary, however I find that I feel so determined/ stubborn to live as normal a life as possible that taking it easy just doesn’t seem to feel right.

I know that realistically my body would most likely thank me if I started taking it easy more often. Pushing the boundaries over and over only results in pain, I know that. However there is some small part of me that each time hopes that this will be the time I will achieve just that bit more. Instead my body goes in to hideous spasms that I have too spend a few days recovering from each time.

I think adjusting your life after diagnosis is one of the hardest parts of the illness. It’s not just your work life, but also your family and social life that are impacted. Having to explain to people that you yet again cannot do something because of Dystonia is incredibly disheartening, it helps if you are surrounded by people who understand and support you. At times it is not the spasms that prevents you from taking part but the fatigue from the treatment. I find the medication leaves me half asleep, which in turn impacts every aspect of life.

I have been living and adapting to the condition for around two and a half years now. I’m not sure if you can ever really adjust to it. I don’t plan on ever slowing down. I enjoy my life too much. I believe the best way to cope with this hideous condition is to take each minute as it comes.

To find out more about how my Dystonia started check out my VLOG https://www.youtube.com/watch?v=HV_L-9vCGPw&feature=autoshare

Posted in Archive, February 2015

Disabled Dating; A Taboo?

Posted on by dystoniaandme

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, May 2013

Simple Lessons

Posted on by dystoniaandme

Every day I have plenty of spasms. Some are short and not to bad, others last hours and cause agony, and some simply make me laugh due to the positions I find myself in, for example I once ended up doing the splits! Thankfully the muscle relaxant that my GP put me on has helped and has slightly reduced the frequency and intensity of these spasms.

Earlier this afternoon my whole body decided to spasm, it was slightly painful and was not the most comfortable position to be in, but despite that I managed to laugh through it with my mum. Knowing that the spasm would eventually release was a big comfort and made it more bearable. I have included some pictures of the spasm below, in them you can see that my eyes, neck, arms, stomach and leg are all in spasm.

In today’s culture people often seem to want to focus on what we cannot do rather than celebrate what we are able to do. Even the term Disabled focuses on it. I don’t like being labelled  but if I have to be then I would rather be termed as Differently Able, as I am capable of doing the same things as any body else, it might just take me longer, I may even do it slightly differently but at the end of the day I can still do it!

One of my symptoms causes me to go blind. My eyes go into spasm and my eyeballs roll upwards in their sockets. Being blind on and off has taught me to appreciate the beauty that surrounds me in daily life. I previously took my sight for granted, the day I went blind for the first time terrified me, I was having a big panic that I would not be able to read again. Now when I am able to read I appreciate the ability more than ever before. Control of our bodies and good health is such a precious but fragile gift that people tend to abuse. We need to open our eyes to the world and learn to appreciate what we have. Society needs to understand the gifts that senses such as sight brings us and learn to focus on the positive side of things.

I could easily allow myself to drown in a pool of negativity but by focusing on the little things in life like being able to see, and by pushing myself to achieve what ever I set my mind to, I am able lead a positive life. I have my moments of being down, just like everyone does but I wont ever let having Dystonia beat me.

 

Posted in Archive, February

Positive Proactive Progress!

Posted on by dystoniaandme

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!

 

Posted in Archive, January

Amazing Progress!

Posted on by dystoniaandme

Today has been truly wonderful! I had my third R.D.A lesson, and I made so much progress today. I really shocked myself! In the last two lessons I have had, I have had a leader and two volunteers on either side of me, so that they can catch me if I have a Non Epileptic Seizure whilst on the horse. However at the start of my lesson today I only had a leader, and by the end of the first ten minutes it had been decided I did not have a need for a leader!!! This was fantastic and I was extremely happy.

We spend the majority of the lesson in trot, and practising changing the rein in trot etc. This I adored, as I was being allowed to do even more than I had done in my previous lessons. I normally just do sitting trot and I just try to stay as still as possible in the saddle, however as my Dystonic leg was behaving rather well today, my instructor and I decided that I should give rising trot a go. I was slightly nervous at the idea of it, as I did not know how my leg would react. It turned out that I had no reason to worry!! I put as much weight as possible through my left leg (the working one), and started doing a slightly lop sided (but who cares about that) rising trot. To say I was in heaven would be an understatement. I felt so carefree and alive. I could have cried with happiness when I realised that all my leg had done in reaction was to twist sideways!!! This was such amazing progress and has given me so much confidence!!

There are not enough words to describe how much I love riding!! I treasure every single second of it, and feel very lucky to have the opportunity to ride among such a vibrant and supportive group of people.

I also attended my support/research group. As usual I had a laugh with the group, and really enjoyed the session. I had also made progress in the group, by being able to do some of the relaxation methods more successfully than I had managed previously. I left feeling very relaxed and over-joyed from having such a great day, full of amazing progress!

 

Posted in September

Dystonia and Public Transport

Posted on by dystoniaandme

Today I realised I had two rather important hospital appointments this coming week. Whilst neither of these appointments are dystonia related, the dystonia makes it damn near impossible to get to the appointments. To get to these hospitals, the appointment letters recommend that you use public transport as parking at the hospital and in the surrounding areas is extremely limited. At first this seemed just to be a mere annoyance, however this soon became a major issue.

Our town train station is not accessible by wheelchair, and the nearest one that is you must book 24 hours in advance to let them know that you will need a ramp, but yet it is even more of a struggle to get help getting off at the other end. Then factor in that the majority of the underground stations (including all the ones I needed to use) are not wheelchair friendly!

I have only been bound to a wheelchair since September 29th. Yes, I can hobble on my tip-toes, but this is only for a few steps  before the dystonia alien rears its ugly head, it is no-where near far enough to enable me to get on and off a train. We had been trying to avoid getting a blue badge, not for any particular reason, but we seemed to be managing to get the wheelchair and me in and out of the car OK  so there was no need for it.

I think it is disgusting that the public transport service has not been made wheelchair/disabled friendly!  What if I had no-one to drive me and I had no choice but to use public transport? Am I expected to pay money I do not have for an over priced taxi to London, which would easily cost me hundreds of pounds? I think this shall be yet another issue that needs to be added to my ever growing list of complaints!