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


Medpac – Very Orange But in a Good Way

I received an Amazon order in the post this afternoon and it was my bright orange Medpac and I’m very impressed.

This Will not be a full review I’ve only had it a few hours but I wanted to share as they have sizes and shapes to suit all needs and I’m genuinely impressed by what I have seen so far.

They are no joke bright orange this is good because in my case in contains epipens and they need to be found quickly if they are needed.

I ordered the one to fit two epipens and it fits 2 epipens snugly it has a  clip on the side of it and helpful little cards to put important information on.

I’ve only had it an afternoon and already someone has asked me where I got it so here is a link Medpack Link

6 Things Every POTSie Wants You to Know…

Lily in Grace

Many of us in the POTS community have shared stories, posted websites, and pictures hoping to raise awareness during the month of October(the above picture is me sitting outside so I can watch my daughter play.  Yes, I have to use an umbrella to shield the sun and wear compression hose. But that’s ok).  Knowing October is Dysautonomia Awareness Month, we have made a more concerted effort to use our voices to advocate for this debilitating condition.  Just this week I started going live on a POTS support and awareness page, and I have been blown away by the responses.  I have heard story after story about regular people living pretty incredible lives and then…wham…POTS showed up.  For many of us, we can remember the moment when POTS entered our lives.  It’s like a crazy ex-boyfriend/girlfriend showing up out of nowhere and refusing to leave.  I think is it incredibly…

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In answer to Ian’s first question… all the time with EVERYTHING!

Ianbev72's Blog

Do you ever feel as if you have to justify yourself to people who have little or no knowledge of what you do or how you run your life? Ah ha, another loaded question you think, but I can assure you, it’s not asked with a loaded agenda.

As I’ve just started my new job, I’m going through the access to work process again. Dealing with the DWP (department for works and pensions) element of this can be an experience to say the least and often demands a huge amount of patience, humour and an ability to swear a lot under your breath.

Admittedly, they do have to look after a budget which needs to go around a bit, but in my mind it should also necessitate an understanding of the challenges that we face on a day to day basis. One example of this is the need to have…

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How the next Government can make Everyday equality a reality

This is so important disabled people make up more than 20% of the electorate so it’s going to be interesting to see how each political party sells there policies.

Saying this there are huge problems nation wide with the accessibility of polling stations AND postal voting – during every election there are people denied a vote. Amongst the community with learning disabilities many are denied there right to vote – Mencap did some great work on this particular topic.

Finally the things SCOPE point out here really shouldn’t be that hard to achieve and it’s sad to think that in 2017 we are still asking for the same basic things.

Scope's Blog

In just six weeks’ time voters will go to the polls to have their say in the General Election. 

Today we are setting out our calls for the next government – commitments and changes we are asking for so that by 2022 disabled people have the same opportunities as everyone else: Everyday equality.

We know that in 2017, life is still much harder for many disabled people than it needs to be. Too often disabled people can’t access the support they need to at home, in education or work and face negative attitudes, extra costs and pressures on family life.

Action is needed in a range of areas which is why we would like the next government to take a cross-government approach to disability which tackles the barriers that prevent disabled people from participating fully in society.

Today we are calling for action in three main areas:

Improving disabled people’s…

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