Trip to thorpe park

It's really late but I'm full of adrenaline (and sugar, but that's an issue for another time).  I can't sleep so I thought I'd write about my recent experience going to thorpe park.

The last time I went to a theme park was several years ago.  I was partially mobile and it was the first time I ever used a wheelchair!  This definitely helped my relationship with wheelchairs as I could see what could be achieved by using one.  This was just over 2 years ago.

This time was going to be different.  On the one hand, it's taken almost those 2 years to get my mobility back to a point where I can move my legs reasonably freely.  On the other hand, any form of weight bearing/being upright still has massive ramifications on my health.  But, I really wanted to go so I duly planned a trip with just one other person so that htere wasn't too much to think about/plan and I could use all my energies as a 'test run' to see how my body responds to rides now.

Planning this got a bit stressful when I realised that I would need to bring letters of proof that I couldn't queue.  DLA is not enough apparently.  Neither is the fact the queues are not wheelchair accessible so I can't get in them anyway!  Another major factor in me only going with one person was that you can now only have one person jump the queues with you. There really needs to be a system for when people go in a group.  They also only allow one disabled person on a ride at a time due to health and safety!

As per usual, accessibility was the biggest issue.  Some rides can only be accessed by stairs, some need to be climbed in to (rather than transferring) and others are made inaccessible by the complex walking routes required to exit in an emergency with no evacuation chair available.  I barely slept the night before as I was trying to work everything out and stressing that I might spoil my friend's fun by not being able to go on anything.

We arrived at the park at about 12pm giving us 5 hours.  On arriving we discovered that the following rides were shut:-

- Nemesis Inferno

- Collosus

- Samurai

None of these closures had been listed on the website in advance.  This only left 2 big rides I could go on in terms of their safety procedures: no way out and stealth.   I was pretty gutted.  

On the day I decided that it was worth exhausting myself getting in and out of log flumes and the like and in many ways I wanted to make the most of the recent increase in mobility.  So, we went on 

- storm surge

               - Like a helter skelter water slide with inflatable dingies.  I had to walk about 1.5 metres to get in to the boat and then throw myself in (thank you gravity!). To get out my friend helped with my legs.

- loggers leap

              - This exhausted me.  They tried to slow the boats down but this just meant I was upright longer so dysautonomic stuff set in and made me feel rough as hell.  It was still fun though and we went on it again later (twice in a row without getting out :p)

- No way out

             - you can do a standing transfer in to the ride but my friend had to drive my chair back out and towards the ride exit because the ride starts and ends in different places.  This was a bit embarrassing as they had to hold the ride both at hte start and end.  The ride itself was good but in terms of my impairments very very challenging.  The ride is a standard carriage with just a bar over your lap.  My sitting balance is pretty poor so I felt as if I was falling out of the seat.  In the end I had to sit with my arms crossed over my lap with one arm holding the grab rail and hte other holding on to my friend's arm.  I probably looked like I was terrified but in reality I was stopping my arm from spasming out of the ride carriage!  

With the exception of stealth, the other main rides require you to be able to walk at least 25 metres if the ride breaks down.  I can't walk anywhere near 25 metres!  But...being the adrenaline junkie I am and because my favourite ride was broken (collosus) I decided to risk it.  If it broke down then I'd walk, crawl, bum scoot and beg for piggie backs to get off....but realistically I was hoping to god they didn't break down.  So we went on:

- The swarm

                 - This ride was absolutely incredible.  I went on it twice in the end.  amazingly no one asked if I could get off in an emergency.  The seats were incredibly supportive and perfect for me as they were angled so offered enough support.  I could also loop my arms in to the chest strap meaning they were safe from spasm.  The only access issue getting on was that I needed someone else to do the buckle as well as my friend needing to push me up in to the chair (it was a bit high).  I was in hysterics for a large amount of the ride because every time the carriage inverted my legs would spasm out at 90 degrees so all I could see was these legs shaking up in the sky!  Was amusing watching it on the video footage they had afterwards. 

After this we decided to go on nemesis as it had re opened...but got there and noticed there's a massive stair case to get up to the ride....so no can do.

We decided instead to go back towards stealth.....but it had been closed.

So we decided to go on saw (another 25m+ evacuation route)...but that had been closed too!...this is how we ended up going on swarm twice.

I'm yet to know for certain what the repercussions of such an exhausting day out will be but all in all it was a very enjoyable day.  However, I was very disappointed that so many rides were closed when we arrived with no notice + that others were closed through out the day.   I'm also pretty annoyed that rides completed as recent as spring 2012 could have such inaccessible evacuation policies meaning that although the ride itself is accessible, health and safety policy gets in the way.

Guilt, grief and self doubt

Guilt has been somewhat of a constant companion throughout this illness.  From the niggling doubts at the back of my mind whenever I rest, to the all encompassing sense of shame and failure after meetings or appointments with social services or doctors.  It's always there - doubts about whether I'm doing enough to stay well and independent; guilt that I'm taking resources away from others.

For me, this seems to have been tied in quite strongly with grief.  Feeling ashamed and guilty about everything is a convenient way of ensuring I never accept the true reality of my impairments and illness.  But it's also about control - the control of others, namely social services, the NHS and the DWP.  They act as though if only they could grind me down enough, I would stop fighting for my rights.

Sadly, it's been working.  The main reason I've not written in this blog in so long is because I've felt as though nothing would be good enough, political enough, eloquent enough - because I've just not been well enough to write as well as I used to.  I guess I thought people would judge me - but this is a blog, not a holy book.  People do not need to hang on to my every word.

I had a realisation the other day as I was heading through a shopping centre in my powerchair.  There is no chance on Earth I would be able to walk even 1% of the distance I had in the short space of time I was there and yet others were strolling around casually.  I then thought back to my own guilt when I was given an NHS powerchair.  I felt guilty because I can walk 2 metres... occasionally.  If I'm feeling guilty enough I might even walk 5!  Looking back, this just seems ridiculous!  You can't survive without a wheelchair whilst only being able to walk 2 metres occasionally!  My flat is much bigger than even my forced sickness inducing 5 metres!

The system is broken.  It's scarred my thinking and hindered both my independence and my acceptance of  impairment, but I'm working on it.

I will try not to feel guilty about not working.

I will try not to feel guilty about using a powerchair.

I will try not to feel guilty about needing care.

I still have something to offer in this world and no amount of prejudice will stop me from doing so.

wheelchairs and choice

So, I've decided to take part in National blog post month.  Wish me luck. I'll try and post something even if brief each day.  It will all be about chronic illness, neurodiversity and maybe some queer theory thrown in. Here goes! (WHOOPS! That failed....)

People are often seem a little confused that I use a wheelchair. Like most wheelchair users I often get asked by total strangers “what happened” to me. The assumption being that I've had some sort of interesting accident resulting in paralysis. I don't generally bother answering these sorts of questions (I've not yet remembered to say “shark attack”). It gets more complicated when it's people I know well enough to answer though. Every time someone asks, I find myself sighing. “It's complicated”. My emotive response often leads people to thinking they've offended me, but that's seldom the case...I just don't know how to answer. “an illness – still working on a diagnosis”, “Maybe M.E” followed by “severe M.E” (to try and justify myself) and “ME is more diverse than you might imagine” (to try and put off any stories about someone's “friend who had M.E”).

It's now becoming more well known that people use wheelchairs for a variety of mobility needs, and that many (most) wheelchair users are able to walk at least a little. However, I've still experienced much prejudice by the medical and social care profession as well as from family and friends. So, whilst being cautious not to justify myself, I'm going to attempt to share my reasons for using wheelchairs.

So why do I use a wheelchair?

About 2 years ago my health started declining. My brain was causing some pretty weird symptoms, the most scary of which related to my ability to walk. The room span, any slight change of light effected my spacial awareness and my legs would do different things to what I asked. One day I woke up with a limp, then quickly this progressed to both legs. Walking became slow, tedious and took a huge amount of energy, energy which was already limited by my illness. Every time I left the house I'd end up stuck in bed for days, barely able to move for hours at a time and needing to crawl to the toilet and living off cereal bars stashed down the side of my bed. My body didn't seem to tolerate being upright in any way. The previously 5 minute walk to the tube station started taking half an hour and before I knew it I started needing to take the bus just to get to there, then even getting to the bus stop became impossible. In June I experienced my first severe periodic paralysis episode. I told a friend who told me to call for an ambulance. I did as I was told though regret it to this day. A doctor came for a short period of time and then dismissed my symptoms. I was then repeatedly asked if I could “walk properly yet” before being discharged with no offer of transport home. I didn't even have my walking stick with me. The nearest cash point was not working so I had to force myself further away from the hospital. I had to cancel my weeks plans and stay in bed, all because I tried to do the best thing for my health.

I decided to get an electric wheelchair after realising the only way I would be able to attend a music festival was if I used one. It was cheaper to buy on ebay (well, until the batteries stopped working!) than to rent, so I made an investment,planning to use it for “long” distances. I came back from the festival very unwell, but had still managed to do it, something which would never have been possible without the chair. I quickly realised that if I was to keep my health in any way stable I would need to use the wheelchair at all times outside my home.

My wheelchair use then had to increase after a severe UTI caused took away all walking ability. My ability to put one foot in front of the other has returned and has steadily improved thanks to more adequate care (though remains more impaired comparatively), however, my wheelchair use now remains near full time due to the extreme impact that standing upright has on my health. Until this is resolved, any work on my gait is of little use. Currently, it remains better for my health to use a manual wheelchair indoors in order to “pace” my energy levels. Also, in my opinion being mobile around the home in whatever capacity is far better than staying chained to the sofa.

Reading this back, my decisions to use a wheelchair seem pretty fair, however my decision has repeatedly been met with resistance from the medical profession and used against me. Rather than recognising my walking problems, doctors decide that they're not bad enough for me to use a wheelchair. I've experienced relapses after taking a “specialist”'s advice on this issue. More recently I was denied access to social care and treated like a fraud after a social worker spread lies about me within a hospital telling staff that “If he really needed a wheelchair, the nhs would have provided one”. This lead to an extended stay in hospital as I tried to prove I would not be safe without adequate care provision. Even since leaving hospital I've had to repeatedly argue that my illness is not psychological, and recently won the fight for a wheelchair service referral after a physiotherapist wrote an inaccurate report leading to refusal of referral (she helped me transfer in to my wheelchair, left me stranded without my controller and then wrote a report declaring me safe to go home and not needing to use a wheelchair). All of this has understandable had an impact on my mental health.

There is a general attitude that disabled people need to “do their best”, “overcome obstacles”, “work towards independence”, “avoid deconditioning” and try and resist wheelchair use for as long as possible..but I think for a lot of people, the medical profession has it completely wrong. When it comes to chronic illness, sometimes accepting as much help as you can is the only way forward to balancing a baseline of health whilst still retaining some control and quality of life. Many of those resisting wheelchair use remain bed bound or housebound. How can that be better for their health than getting out (within their own limits) and remaining partially mobile?

So, no, I have no badge of honour, no moving story of overcoming illness and disability but I didn't give up either. Wheelchair use may have been a choice for me, but really, it was common sense.