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.

Day 2 – The Simple Things in Life *

*Or NOT!

Today I am inspired by chatting to someone who has  only in the last 2 years become visually impaired. Meeting a relative newbie at the start of learning to live life independently with a sever visual impairment has made me think of all the little adaptations and things i do in a strange way without even thinking about it.

Take for example making a cup of coffee and carrying it over to your faviourte spot on the sofa to curl up and watch TOWIE (or whatever the latest TV craze is).  How do you get that boiling water from the kettle into the cup? Let alone carry the cup of hot coffee from the kitchen to the sofa around relatives, friends and animals without ending up wearing it?

The bottom line is you don’t I regularly spill boiling water on my hand when I make a hot drink, it does not scold me because by the time i have said a naughty word and waved my hand in the air the water is at a much cooler temperature. On Teaspoon going from jar to cup I always spill coffee and sugar. Not to mention just the other day I tripped over a shoe at a friend’s house and promptly redecorated her hallway with my cup of tea.

My mum rang me earlier today to tell me she had polished her shoes with fly killer instead of shoe polish, you find a can in the cupboard how do you know which one is which? The reality is if it’s not where YOU ALWAYS leave it then mishaps happen. In the past I have been washing my hair and accidentally used sun cream instead of shampoo which is a horrible experience because of the greasy nature of sun cream but it happens.

Yesterday I realised how lucky I am that I don’t have any food allergies, I was buying cake for a friend who does and it suddenly occurred to me that if I had been on my own I would have had no clue which cake would make her ill and which cake would be safe.

Best before dates… Need I really explain?

Think about walking down to your local corner shop, now imagine that with your eyes closed, does the thought of walking to the shop with your yes shut scare you? Then add into the mix all the things you could encounter on your journey; Pedestrians, cyclists, traffic, road works, pot holes, chewing gum, overhead branches, children, birds, wheel bins, lampposts, postboxes… There where some shocking statistics released a few years ago that 8 out of 10 blind people never leave the house alone due to fear and lack of confidence if you couldn’t see where you were going would you make it to work on time?

This is a topic I have written about before I realise both here (You know your a blind person when…) and on the BBC Ouch Website (How to **** in the woods) but the point still remains, things I do every day are different to that of a sighted person, for example right now writing this very post I am not poking at the keyboard or my computer screen, I like to write with my eyes shut and without and screen reader software so its just me and my fingers dancing across the keyboard. I type at my fastest when I  and not looking or listening to anything else and its something I really enjoy having the time to do on occasion. Of course when it comes to proof reading and editing my writing I do look at the screen but then still miss half my typos anyway! Sorry blogosphere your just going to have to put up with me writing utter rubbish that is not grammatically correct!

 

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!

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!

BBC NEWS | Wales | Parking dispute blind man arrest

BBC NEWS | Wales | Parking dispute blind man arrest.

This is what blind people face every time they leave there front doors, drivers parking on pavements, people leaving there bikes on the pavement, overhanging branches, roadwork’s, and street furniture not to mention other pedestrians and road users.

The sad thing is this is a common story all over the country, I have had the same problem near my parents house and even worse in Southampton, it put the safety of guide dog owners at risk and threatens our independence.

It also causes problems for people with pushchairs and wheelchair users.

Car drivers please don’t park on the pavement.

Just Giving!

Good evening to you all dear readers, I am forever thankful that you actually look at this stuff and at least some of you apparently like it and come to visit time and time again!

I am however about to beg… In September I am going to be rescued from drowning by a Newfoundland dog.

I’m hoping I won’t actually be drowning but saying that I have not been swimming in  a long time, anyway I digress, I am after sponsorship for this event to raise money for The Guide Dogs For The Blind Association (UK).

As you should by now be aware I benefit from having a Guide Dog (Gus) so this is a charity very close to my heart. Having Gus has boosted my confidence and made me so much more independent, we go everywhere together and are very rarely apart. There are also the benefits that Gus is my companion, I am never alone because he is always their, at hospital appointments, at uni, at Guide Meetings, at cricket… The list would be endless.

Please help me to raise money to insure that Guide Dogs can continue there vital work for years to come.

Click on the button on the right to sponsor me or visit http://tiny.cc/kXB8M

Facebook | The Guide Dogs for the Blind Association (UK)’s notes

Facebook | The Guide Dogs for the Blind Association (UK)’s notes.

(The above link takes you to a Facebook page where you can listen to the audio leaflet)

YOU DON’T HAVE TO BE BLIND TO HAVE A GUIDE DOG!

I am the living proof of this, I’m registered as partially sighted although it is commonly assumed that I must be compleatly blind to have a guide dog – WRONG!

BBC NEWS -Airport security ‘humiliated’ man

BBC NEWS | Northern Ireland | Airport security ‘humiliated’ man.

My own experence at airports and various other places with tight security has been interesting. Security staff simply don’t know what to do if you are disabled and as a result don’t know how to help.

At Berlin airport I was asked to remove my supportive boots compleate with orthosoles, stood on one leg. I explained that I could not stand on one leg  let alone stand on one leg and remove my boot at the same time. I asked if I could get someone to take my boot off for me, this was not allowed, I asked if they minded me sitting on the floor this was not allowed. In the end the person I was travelling with had to physically hold me up whilst I removed my boots and orthosoles, A very humiliating experence, when the time came to put my boots and orthosoles back on,  I was given a chair!

That’s the only really negative experience I have had other than being accused of being drunk and the walking through the gates with no cane or guide dog taking a leap of faith.

Interestingly Gus has never been security searched however my long cane has been, I was asked to fold it down so a security guard on the London Eye could check there was nothing illegal inside!

Society does not understand : The Bus Journey

Public transport is something that interests me a lot, possibly a little too much as you are about to discover. The reason for it is like many disabled people I can’t drive, well you would not want a guide dog owner driving now would you?

So anyway parts of my life, the activities I can take part in, the way I spend my time and to an extent my choice of where I live relies heavily on a mixture of public transport links and timetables, if there is no bus or train I can’t get there. (Unless I beg a friend or my long suffering father to take me)

I have been home from university for a few weeks now for Easter, however last Wednesday I had to go back for a few appointments and more importantly work.

This means catching a bus from Gosport to Southampton, the number 72 it runs once an hour somewhere between 25 past and 25 to the hour, its not a precise science.

I got on the bus which was not a modern fully accessible one, it was a noisy old banger.

This presents me with a problem, there is only one decent guide dog parking space on this type of bus, right at tbe back next to the emergancy exit door. It has more dog room due to the presence of the door so there is plenty of space for Gus and lets not forget he is a big dog!

Surprise surprise this seat was taken.

The next option is to sit in the regular seat, put Gus in first (closest to the window)get him to lay down then I sit right on the edge of the seat. This method is not very comfortable for either of us but is survivable.

On Wednesday the bus was rather busy so there was one said free double seat, we hopped into it and I thought no more of it.

Then the bus started to fill up and eventually the seat by the window next to me was the only seat left, but Gus was laid in a small ball in the footwell, even the smalles person in the world could not have sat there.

I then got asked by somone if I could move up, I explained that my guide dog was under the seat and all was well.

Then as the journey progressed more people asked… and the mood on the bs started to turn hostile.

People got rude, started staring and talking about me being rude  and gossiping about how dogs should not be allowed on buses. 

Of course he is not an ordinary dog he is a registered assistance dog he s my independence and has just as much right to be there on the bus as any of the other people moaning.

It was indeed not my fault that the bus was not an accessible one, but the people on the bus made me feel rather guilty about being there.