Dear carer....

Dear carer,
you've been working with me for 10 months now.  This is long enough to know little things like to change gloves between helping me go to the toilet and getting me a drink.  You should have known how to turn people before you even started working with me.  After over a hundred showers, you should know little things like to move things back so that I don't have to struggle to reorganise the bathroom everytime I need the toilet.

p.s please wash, paying particular attention to your feet (or at least leave your shoes on) and stop taking personal calls whilst here.

pp.s I know your fiance sits outside my flat waiting for you some evenings.  This is not ok.

Another complaint time?


On a more positive note, my care budget has been agreed for certain.  I will be making some calls tomorrow but I already have some interviews set up.  Hurrah!

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.

things carers shouldn't do (but from experience have!)

- you should probably know what a sandwich is.

- it is surprisingly simple to avoid spraying someone's genitals at full force with a shower head.

- Being 4 hours late is not ok especially when the person you're working for hasn't eaten or been to the toilet.  They need you there for a reason.

- 'I'm going on a night out' is not a good enough reason to turn up over an hour early.

- Pads do not go in the recycling (and your kids nappies shouldn't either!)

- If at first you fuck it up aim not to fuck up again, or again or...

- Let the person you're working for know that you have heard them.

- Remember the tasks you're asked to complete.  If you forget, ask.  Don't just leave.

- Don't walk away unless you're sure you've finished being spoken to.

- You have keys for a reason. Remember them and don't stand outside banging on the door for 40 minutes if you forget.  It won't help.

- Think about portion size.  Is 1 and a half tins of baked beans really necessary for one person?

- Talk to the person you work for.  Ask them how they are. Seeing someone 3 times a day who only stares at you is pretty isolating.  This will also make your job easier.

- Don't shout or insult the person you work for.

- Don't laugh at the person you work for.  If you can't help it then at least explain why.

- Don't fall asleep on the job.

- Wear deodorant.

- If your feet keep getting wet, wear more suitable shoes or shoe covers - don't take your shoes off in the shower.

- How Mrs Jones likes her back washed is irrelevant.  If someone says you're hurting them, listen.

- Avoid terms like 'change you', 'dress you', 'shower you' etc.

- Your mortgage and family problems are your own business.  Your client is not a counsellor.

- Turn your mobile phone off.  If you have to take an important call then say so.  Don't just stand arguing on the phone in front of a client.

- Do not judge or guilt trip your client about their disability and how hard you perceive they are trying.

- If you break something, apologise - even if you don't think it was directly your fault.