Wheely Interesting Thoughts

So I don’t write much these days, I don’t have the time or energy and I kind of feel like I don’t have much to write about that wouldn’t be either self indulgent or read like a medical textbook! However its been over a year now since I became a part-time wheelchair user and got my electric Wheelchair Buzz and I’ve been thinking for a few weeks it would be good to put some thoughts down on paper, being a visually impaired electric wheelchair user and a guide dog owner in the UK is still a very rare thing so I kind of want to share in an attempt to help others.

The first run down of this will be some general thoughts and observations and then I intend to do some bullet point lists because everybody loves a good list.

The boring bit

Buzz is an Invcare Fox and I chose to have him in blue, he is on a lease from the Motorbility Scheme meaning I pay for him. A substantial amount of my weekly benefit pays for Buzz each week I also had to pay an upfront deposit and pay for necessary adaptations. I chose the Fox because of its ability to break down and fold to fit in a car, it was the most rugged and easily transportable chair I could find.

But wait your blind?

Yer I was terrified! I knew this was something I had to do to keep my independence and mobility but in reality I was very anxious about the whole thing. The thought of injuring another person or my Guide Dog Ollie terrified me and I mean terrified me! my first tentative sessions of driving Buzz I was on full alert using all my senses even though I had sighted people with me who were supportive encouraging and telling me I was a natural. From this test drive I went on to learn to use a long cane from Buzz

Learning to use a cane from a wheelchair

For me the first step was learning to use a cane with my left hand, I’m right-handed and had always struggled to hold and use my cane properly with my left hand. it felt alien at first but after looking at the way I grip the cane and some practice it became more natural. during this time I aimed to do extra cane practice whilst walking to get used to using the cane I learned though doing this that oh boy did I have a weak left wrist! The sweeping motion is exactly the same only the angle is obviously a bit different and you need a longer long cane. Initially going in a straight line is really difficult because you have to get used to one wrist making the arc for your cane and the other driving your chair. Sometimes the chair driving hand tries to copy your cane hand and you move from side to side unintentionally – I was reassured everyone does it. In my initial lessons I felt like I would never get the hang of it and then add in holding Ollie on the lead controlling her and I thought this is impossible!

by far the hardest part is that your brain has to focus on two or three things at once it takes a huge amount of concentration to get the cane skills down correctly to keep you safe and drive the powerchair. It is hard work, so next time you see me making it look effortless remember that it isn’t!

Having a good scanning technique is incredibly important if you are using a wheelchair a slip of a curb or down a step could result in flipping the chair with you in it and that would not end well.

Once I had mastered the local area the next step was to try to get on the bus again I was terrified but probably not for the reasons you might think.

As a new part-time wheelchair user I was really worried about the reaction of other people on the bus and the bus drivers – yes i was worried about what people where thinking about me. I was also concerned about the dreaded reverse round the corner and all the poles on the bus to get into the wheelchair space… there is a lot to bump into! My first attempt at getting on and off the bus it was raining and the bus was leaning on a camber towards the pavement it was an out of service bus and there was no pressure but it did not fill me with confidence. the combination of wet and sloping meant that every time I tried to get off the bus my wheelchair slid and I had very little control I thought if its going to be like this everytime I wont be getting the bus very often. Thankfully its really not like that all the time and after more practice and then introducing Ollie to the idea we now travel by bus regularly in Buzz.

The results of all that training

This is the best bit even when I am really poorly I can now get Ollie out for a walk or get to the hospital or my GP. I can now take ollie for a free run independently without the help of another person which has been so good for both of us. I can enjoy walking along the shore and stopping to watch the world go by and take pictures. I can take ollie for really long walks and go to events and carnivals without constantly looking for somewhere to sit down. At times when im fatigued I can still go out and enjoy life without pushing my body beyond its limits.

My wheelchair means I can still be me!

And with that I will sign off for now but there is more to come on this topic

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Woman With #EDS Fires Back After Being Accused of Misusing Disabled Parking | The Mighty

“I think it’s my turn to say something.”

Source: Woman With EDS Fires Back After Being Accused of Misusing Disabled Parking | The Mighty

 

This is a constant concern of mine initially when I first had a blue badge (UK disabled parking permit) as a blind individual with a guide dog I delt with people asking why I needed one when I could walk fine.

I used to have to justify it, even to friends and I know many others have too. Its all about being able to get your guide dog in and out of the car safely (if you have a guide dog). If the dog is traveling in the front footwell you need to be able to get the car door open as wide as it will go to get both dog and owner out safely, disabled parking bays allow for this and also if your dog is in the boot of the car many have extra space at the back  to allow you to get your dog out without standing in traffic. it makes things a lot safer for all involved. The second reason is parking closer makes it easier for a blind person to get into for example a  store safely. Navigating a car park with traffic can be tricky even with sighted assistance so the less time that is spent in the path of oncoming traffic the better.

Over the years I’ve become more than comfortable explaining that to people but now I have an additional need.

You see I also have EDS and if its a bad day I am DESPERATE to get in that blue badge spot. On a bad day for me I am in a lot of pain and my legs feel like they could buckle at any moment.

This is obviously something people can’t see its totally invisible – in fact I’m pretty sure most of my friends don’t get how bad my bad days are ( with the exception of the inner circle you know who you are) and why is this? because I spent years hiding it.

So basically people don’t judge you just can’t see how much pain the person next to you is in or what they are going through.

Guide Dogs Are Wonderful

I know you knew that already probably if you are reading my blog – But Gus my guide dog is not actually featured here that often as he is useualy to busy on his facebook to bother with blogging imagine if you where trying to type with paws, you would go for the short option too!

As I think most poeple who have any regular contact with me will already know Gus has had an on and off limp for the majority of this year, nobody was too worried because although it kept reaoccouring it was not a bad limp and as long as we did not go too heavy on his workload and avoided stairs and to much jumping about he was largly fine. He was oftern excited and wanting to work even when he was limping – He loves his job of coming everywhere with me.

It just kept coming back and I was worried about Gus working even though he wanted to if he was in pain.

So about 5 weeks ago now he underwent a CT scan of both his front legs and later surgery to look inside his joints with a camera, I was dreading the outcome as the problem has persisted for so long I had convinced myself that it was going to be really serious and end his carrer there and then. I was warned of all the horrible things it could be and just had to pray that it was something that could be fixed or if no treatment was avalible that Gus could get good pain managment and have a long and happy retirement. Althugh the thought of Gus retiring breaks my heart, I felt I had to do what was right for him and I would not want him to carry on working with me if he was in pain.

When I got Gus back after 2 days in the specialist vets we got the news that a ligament in his shoulder was almost totally tourn, he must have at some point over the last 9 months been in a great deal of pain, but he never showed it! whenever I took him to see the vet he seemed to not limp at all and really didn’t show any great discomfort when they examined his joints. More to the point he kept working with me even though some days it was probably sore, he still guided me safely, we had no accidents, he still went mental whenever he saw me put my shoes on – He still wanted to work even though working was painful!

The recomendation from the vet was at least 3 months of total rest and gradual rehabilitation but that he would make a full and total recovery. Four days later Gus left for the guide dog hospital in Lemington Spa he is expected to be there until April. I get regular updates about his progress and know he is in the best possible place where there are people looking after him 24/7 for cuddles and careful play time. As the weeks go by he will start physiotherapy and hydrotherapy and eventually going for gental walks on the lead.

So I have no guide dog and I feel like a massive part of my life is missing and my heart is breaking for him! My mobility has taken a massive knock too, because of the christmas shopping period I am really restricted as to where I can go on my own. Town is a total NO and even if I do venture out further than the local corner shop I have to make sure I am back in my flat by dark.

I’m normally a totally confident cane user, I’ve traveled too and from central london on my own with just a cane before but as I did my cane training when I was 15 I never did night work or work in busy places like the Janurary sales! Further knocking my confidence a few months ago I was knocked down by a cyclist whilst out with my cane. It was not my fault and there is nothing I could have done differently to stop it from happening as the maniac went through two read lights before hitting me leaving me in the middle of the road before cycling off!

The whole expereince of being without Gus has really made me reflect on the work of guide dogs.

When Gus left my confidence and independance left with him as well as my companion and friend. I would not go as far to say that I took Gus fro granted but suddly loosing him although only being for a short time has really made me think of how wonderful Guide Dogs UK are.

So I end this post with a plea, next time you see a guide dog collecting tin pop some change in it or even better organise an event to fundraise for Guide Dogs or Sponsor a puppy.

Guide Dogs get no money form the govenment and rely totally on donations from members of the public – there work is amazing and you don’t have to take my word for it check out the video below.

You Know You’re a Blind Person When…

Last week I read this article by Charlie Swinbourne Titled “You Know Your Deaf When…(Part 1).

This of course got me thinking of the you know your blind when hilarity this is something I have often discussed with blind mates and it stuck me that I have failed to post something like this before. Thanks Charlie for bringing it to my attention!

I must say all of these things you are about to read are true and have happened.

I would also like to add that if you have your own additions to the list you are about to read stick them in a comment with your name, URL and whatever and I will add them in!

Ok so after all that…

You know you’re a blind person when…

  • You accidentally wash your hair in factor 30 sun creme.
  • You don’t have a single pair of matching socks.
  • You hand your sister a container which you think is shampoo, your slightly less blind sister manages to see that it is in fact Hob Bright oven cleaner.
  • You go on holiday and accidentally come back with someone else’s Guide Dog.
  • You persuade a friend to play darts with you and hit your friend in the leg when it’s your turn.
  • The phrase ‘Blind Drunk’ has a totally different meaning to you.
  • You are totally unaware that the city you live in is completely consumed with fog… it always looks like that to you!
  • You HATE the idea of Shared streets!
  • You hate car drivers except when they are driving you somewhere.
  • Because you have some vision strangers refuse to accept that you are blind.
  • You get told off by the Police for walking into a bollard, they think you have had enough to drink already; ON YOUR WAY TO THE PUB!
  • Having a Guide Dog or cane means you never get ID’d in pubs.
  • You have full conversations with what you think is your friend, you later discover she’s not actually there.
  • Walking straight past the person you are supposed to be meeting is a regular occurrence even if it is someone you know well such as a parent.
  • Reading the cooking instructions on the food you purchase is totally impossible so you guess.
  • A person walks up to you says your name and starts a conversation you talk for a bit and they leave… You still have no idea who it was.
  • What colour are my trousers?’ is a perfectly reasonable question to ask a date.
  • You high-five the persons face instead of their hand.
  • Other people tell you to ‘watch out’ and then apologise and get all embarrassed.
  • You don’t care about 3D.
  • You stop traffic… With your cane/Guide Dog.
  • People you meet tell you all about their blind aunt flora (or other relative) and ask if you know her… After all, all you blindies know each other well.
  • The thought of you running scares your off duty Guide Dog so much that he proceeds to jump on you to make you stop.
  • You wear ear plugs to gigs… your ears are very valuable.
  • Walking along you hold on to your friend’s arm EVERYONE assumes you’re a couple.
  • Audio Description gets you VERY excited.
  • You forget that the friends you are meeting can see, you text them telling them exactly where you are sitting instructions on how to navigate to your position and what colour jumper you are wearing.
  • ‘How long is your cane?’ is a totally innocent question.
  • You spread Marmalade on your toast and take a big bite… Only to discover its actually mustard.
  • You walk into glass doors.

Its A Tough Time For Me

As I sit and write this I struggle somewhat with how to start, in truth it has been an incredibly difficult few weeks for me on all kinds of levels.

For starters University is not going well, it’s not the fault of any individuals but in short I am not getting the disability support I need to be able to keep up with my able bodied peers.

Books are inaccessible, I can’t even find the books I need to look at in the library independently let alone read them.

I have library support time where support workers help me find the materials I need and the read the relevent content which I record as audio compleate with page numbers and all the referencing data one could ever need. From these audio recordings I can then make my own notes, copy down quotes word for word and complete my essays and other research just as well as any other student.

The current problem being that unfortunately The University’s disability support team are massively over stretched, understaffed and struggling to meet the demand.

I have in the last few weeks only been getting one or two hours a week of this reading support which has meant that I am seriously struggling to keep up with my workload in a big way. My lecturers are understandably concerned about my progress and my ability to cope alongside my peers and the whole situation is just leaving me incredibly stressed!

Aside from the academic problems I continue to have serious issues with where I am living, unfortunately for me I am in first year halls even though I am in my second year.

The freshers I live with are phenomenally selfish and have all year caused problems for Gus and myself. There have been weeks during this academic year where they have literally partied every night until around three maybe four in the morning. When they finally come home they are completely out of their minds on alcohol and who knows what else screaming their heads off. That’s not to mention the many times I have left my room to walk down the corridor only to trip over some shoes or another object that has just been left in the middle of the corridor or worst still discovered that they have broken a glass and not made any attempt to clean it up!

Recently things got to the point where they were finally given their final warning about the noise they make. Since this has happened things have improved slightly but I am still regularly kept awake at night.

Only being able to sleep for a few hours has a serious impact on my ability to function, I will be the first to admit that I need a lot of sleep to function normally and if I don’t get it I can struggle with even the most basic of tasks. A three-hour session on public relations is a serious test of my ability to stay focused after such a terrible nights sleep. I worry that the lecturers see me yawning my head off in sessions and think I am really bored or that I have been out partying all night when in fact I have been in halls tucked up in bed attempting to sleep through a heard of elephants running around the corridors slamming doors, playing loud music and screaming there heads off.

Last week things got particularly bad the freshers where having a loud evening and I had already called security earlier on in the evening who had ask the freashers to keep the noise down. It got to half past twelve and there were a group of them congregating outside my door already drunk making a right racket. I had had enough so poked my head out of my door in my PJ’s with no glasses on to explain that I had a nine o’clock lecture in the morning and that I needed to get some sleep. I then got what can only be described as verbal abuse back, very personally aimed around my disability. It’s nothing I have not heard a million and one times before, I reported the issue and it has been dealt with very seriously so I at least feel like I have closure on that particular matter.

Somewhat unsurprisingly considering all the stress I have been under I developed a virus that I have really been struggling with in the last week mainly I have just been rather nauseous but it has had one slightly more unusual twist. It caused me to break out in very bad hives, the skin on pretty most of my body turned bright red puffed out and developed little bumps that almost looked like insect bites. By far the worst part of this was the incredibly intense itching. It is incredibly hard to concentrate on Harbermas’ theory of the ‘public sphere’ when all your mind is really thinking about is how much you would like to rip off your skin in the hope that having no skin would help the itching – of course this is totally irrational! I can however draw a line under the whole affair as yesterday I saw a very nice doctor who gave me a very strong prescription for some antihistamine which has totally cured me and for this I am incredibly grateful.

As well as all of the above my life has run very far from smoothly, Gus and I had a serious incident that had the potential to end his career as a guide dog, luckily as of yesterday this is all sorted now and Gus will all being well continue to be my guide dog for a long time to come. Gus was also ill for a week with various infections, he had to have a week of very light work and was utterly miserable but is now once again fighting fit.

The relationship I was in has ended, we still intend to stay friends as we are already booked in to see Jon Bon Jovi at Wembley Arena in the summer and as we play on the same cricket team.

I am once again having pretty serious issue with my shoulder from September to January I was undergoing physio. I have now been booted out by the physio department for missing an appointment. It was totally out of my control as I had a really bad fall and could barley walk let alone trek for 30 minutes to get to the appointment, but rules are rules. Honestly in my opinion the physiotherapy was doing my shoulder absolutely no good whatsoever, I spent an age every morning and evening making sure I did my exercises to no avail. If anything my shoulder is currently worse than it ever was, nerves are being pinched which is as painful as it sounds.

So all in all I have had a very rough time of it all recently and in truth it has seriously got me down, there has literally been one problem after another and I am just hoping everything will turn out ok in the end. I am incredibly stressed which does not help matters one bit so I am trying to remain calm and not let the world around me bother me too much!

The iPod Touch Edition

Hello and may I start by saying I hope you had a fantastic festive season whatever it was you were celebrating.

I have had a most fantastic time myself, we had a somewhat unorthodox Christmas as we were unable to have a christmas tree in fear that our furry friends would simply destroy it. Still Christmas Day was a relaxed affair, presents followed by a beautiful walk around Stokes Bay beach for us all.

Boxing day I went to stay with my other half who surprised me with lots of VERY lovely presents.

The biggest surprise was the iPod Touch I am using to write this.

Those who know me well will know that I was going to buy myself one with my student loan eventually comes through. I have been going on about how much it would enhance my very existence for some time probably driving everyone totally bonkers.

When the iPod Touch with inbuilt text to speech and full screen magnification was launched it went straight on top of my ‘Thing;s I’m going to treat myself to when my loan comes through’ list.

My opinion of its Text-to-speech capabilities it’s utterly fantastic and completely revolutionary I would really recommend it to any blindie who wanted a new MP3 player or for that matter a new phone.

It’s just as good as I imagined and continues to astound me with its sheer greatness.

Not the worlds most objective review I know I will get back to you with a better one at some point.

I’m Still Here

I have not quit blogging, died or had some terrible accident that has resulted in the lack of posting – I have just been very busy.

A woman with a white guide dog sat on her left

Mum and Tara

University is as hectic as ever, things still fail to run smoothly it seems like the rest of my formal education at university is going to be an uphill struggle against inaccessibility, primitive attitudes towards inclusion and a complete lack of organisation that runs through the place. In short its not going to well, is very stressful but also interesting/fun.

Whilst on the subject of education I did not escape the funding crisis of the student loans failings. Admittedly I applied late but I am still to reciee my student loan. There have been multiple phone calls to my LEA (Local Education Authority) and I am assured it will al be sorted within 6 weeks. Here’s hoping I get some money soon it has been a seriously living on the breadline.

A lot has happened since my last post here, my eye condtion has stableised which was a nice surpise, I never really know how long that will last but its  a bit of a relief.

I now confess to having a bit of a caffeine addiction. I have discovered the wonder that is an expresso and its good! I love a good coffee more than I ever have before. Redbull and other highly caffeinated drinks have got me through some seriously dull lectures and for this I am thankful.

My mum’s Guide Dog Ian has retired and she has trained with a new guide dog called Tara. So now as I am home for Christmas we are a 3 dog household which is a bit of a shock to the system for all of us dogs included.

I have a job! I work 10 hours a week from home or uni or wherever I am really. I am a community executive for a word of mouth project at uni. I recovered from the train journey to get to the training and the 5 days of basically being stuck at a service station in the middle on nowhere with internet at £5 an hour!

Mark and I

I am in love, for those of you that don’t stalk me on facebook I am now in a relationship with a fantastic guy from the Hampshire VI Cricket team called Mark. He also did the Guide Dogs sponsored event that I roped him into.

Writing of cricket I should also mention that I am now joint player welfare officer for Hampshire VICC. I am sharing the position at the moment because I have to do a few courses in child protection before I can officially take on  the role but it’s still great stuff.

This first term at uni I have also found faith in the man upstairs, I go to the christian Union at uni most weeks and also go to Life Church Southampton. The CU guys are a fantastic bunch and very kindly brought me a large print bible which means the world to me. We also went Ice skating together Just before christmas I can’ ice skate but went along anyway and it was a great evening dispite it being really cold!

Heres a few of us in Winchester, I’m not quite sure who took the photo, if I was I would attribute it but hey ho, it’s originally from facebook in the public doman so please don’t sue me people!

A Group of people

CU and Friends Iceskating 09

Train Travel floored

I write this sat in a hotel connected to a garage in the middle of nowhere the hotel has wifi but charges a whopping £5 for one hours access – which I refuse to pay.I am in the middle of nowhere a £8 taxi journey away from Didcot train station, I am here unpaid on a course for the job I am doing at university this year.

To get here I got a volunteer to drive me to Fareham station where I met a support worker and got on a train to Southampton from there we got on another train headed for Oxford, we had to get off at Reading station and change trains again to get to Didcot.

All was going well until we reached our second train, upon boarding it became apparent that the train was hideously in accessible. We asked where the wheelchair area was assuming there would be more space, on getting there we discovered that it was literally an empty space with a small table off to one side.

The train was rather busy and full of older people, who where insistent on sitting down first and finding there reserved sears.

This created a battle field incorporating train staff, my support worker, me Gus and a million grumpy old farts that where fully prepared to pushed there way forward not caring who they ran over with there suitcases or stepped on.

My support worker put her bag down on a chair closest to the wheelchair bay only to turn around and discover a woman had picked it  up and was about to move it somewhere else. There was carnage in the carriage, people and bags everywhere refusing to move to let other people past because there booked seat was that way and they wanted to sit in it now.

The train was delayed by 6 minutes whilst the gridlock continued with train staff and other passengers shouting at large amounts of old farts to move out of the way and let other people such as myself past.

Eventually after much shuffling and complete disregard to other people the large groups of old farts sat down.

Then I discovered that the wheelchair seat had no seats around it, basically there would be space for Gus but not for me. None of the seats around it had any room for Gus to lay under them so what was I supposed to do?

In the end I sat in the wheelchair space on the floor for over an hour and a half, I spent this time having poor Gus being stepped on even after I had warned people that he was there, I was also stepped on, people tried to block us both into the space with bags and even tried to wheel them on top of us.

I remain utterly disgusted by this, I was basically a piece of luggage, one particular old fart of a commuter stepped on Gus  after I had already warned her that he was there, I pointed this out to her and then she patted me on the head and apologised, I was fuming!

Then the guard came through the train and I asked him a question he turned around and answered talking to my support worker instead of to me, referring to me as she and stating that they have special assistance “for people like her”.

I snapped I told him to talk to me not about me I was on the verge of rude but I had had enough by that point.

I have never had a train journey that bad, I am honestly appalled by it I have heard horror stories from other disabled people that have had horrific train journeys, but I have always felt positive about travel by train and enjoyed it as a largely stress free experiences, but now the tables have turned, my journey was utterly horrific thanks to the train company for not training its staff as to how to talk to disabled people, not making there trains accessible and the other passengers being horrible old farts who only cared about themselves with no consideration for others – I hate people that are so selfish!