Smiling Clare

Living Life Within the Limits of Chronic Illness

Category: Wheelchair Page 1 of 2

Disabled Parking Permit

Since the beginning of the year, longer in fact, applying for a disabled parking permit, or Blue Badge as they are called here in England, has been on my to do list.

In September it’s something I finally got round to doing. And I am ever so relieved to say that following an assessment to check I met the eligibility criteria, I was successful in my application.

To say I am relieved would be an understatement. Given I’m reliant on a wheelchair when out of the house it would be hard to see how they could possibly have turned me down, but with this illness being seen the way it is, and the general level of understanding of it, whenever I apply for anything disability related there is that niggling doubt that I will get refused.

Now I am permitted to park in the disabled parking bays, life is so much easier on the times I do get out, as there is space to open the door wide and bring my wheelchair round to the side of the car if I’m in too much pain or too unsteady to walk the few steps down the side of the car to or from the wheelchair. It makes a massive difference.

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Wheelchair Services

On June 13th I was referred by my GP to the wheelchair services in Essex. I was surprised at how quickly my appointment came through, and even more surprised at how soon the appointment was, especially as we had to ring up and change it! I had my wheelchair assessment on July 3rd.

Prior to the appointment I was nervous and trying to find out exactly what happened at these appointments, in order to allieve some of the anxiety I had about it. Given my experience with specialists in recent months, any appointment with a new person in regards to anything which relates to my health leaves me rather anxious. I got some helpful comments from friends on social media but there were differing stories too. So I thought I’d put this blog post together for anyone facing a wheelchair assessment and wondering what to expect; this is based solely on my own experience and may differ elsewhere in the country and depending on your needs etc.

What Happened at the Appointment?

First off, after the introductions, I was asked about how I use the chair. Mainly do I self propel it, the answer to which is a little but not much as I can’t do it for long or any distance. Also how much I use it; I can’t leave the house without it unless I’m going from one door into the car, and able to park right outside the other person’s house. I can’t go around any shops without it.

The next question was why? Is it just a lack of energy or what? The answer to which is rather complex but I kept it fairly simple; it’s mainly fatigue but also my legs are painful, shake and give way beneath me after even a short distance walking on crutches.

The assesor then measured across my hips while I was sat in my secondhand chair, and from my hip to my knee, before leaving the room saying she would see what they had available for me.

She returned with three for me to try, all suitable for my size.

A Sunrise Medical Breezy Moonlight. This I didn’t find particularly supportive, it is the most basic one they do. I couldn’t try self-propelling in it as it was an attendant version in the size I required. Although she did say they did a self-propelling version.

A Sunrise Medical Breezy Rubix. This I found very supportive. I used my own seat cushion (wedged in as it was slightly too wide really) because the foot rests weren’t adjusted for my height but it was comfortable. Plus I could self-propel quite easily; much more easily than any of the self-propelling wheelchairs I’ve had in the past.

And an Invacare Action 3NG. Again this was comfortable to sit in & quite supportive. However I found it difficult, almost impossible to self-propel. Which surprised both me and the lady doing the assessment. I just couldn’t get the momentum on the wheels.

I tried each one before choosing the Sunrise Medical Breezy Rubix which I’d found easiest to self-propel and comfortable. My Dad checked out the weight & had a push and agreed too.

She then went to check the stock and to see how long it would take to get me one. Amazingly they had one in stock & it could be delivered in 7-10 days!

When it was delivered, about 10 days later I believe, it was demonstrated to me and my Mum. They had me sit in it to check the footrest height and concluded it would be about right (it wasn’t and we later had to adjust those ourselves but it does differ depending on what shoes I’m wearing so I can’t really grumble about that!).

We had a few niggles that we identified in the days that followed, which were soon sorted; the cushion they originally provided was slightly too long and rubbed on the back of my legs causing sores. This was rectified in a way but now I have a cushion the correct length, which is an inch too wide for the wheelchair really, so it is quite a squash to get it in! I can’t actually do it myself and it leaves the flip up armrests completely unusable, and so I have been searching for a solution myself. Although it looks like my only option is to make one to fit, which will be fun!

The original armrests were a bit low for me. I think in a way that comes from trying the wheelchair without the type of cushion they provide, but it also stems from me being abnormally long in the body too! These have been adjusted and replaced with bulky padded armrests which make the flip-up feature more difficult to use, but I can actually rest my arms on. Why they are so much wider than the original armrests I don’t know.  These niggles can be lived with and are much better than being stuck in the house without a wheelchair.

Overall I was absolutely stunned at how quickly it all happened. I was expecting a long wait for an appointment and then a further wait while the wheelchair was ordered and delivered. But it seems lady luck was on my side. That’s not to say I’m enthralled with the service provided in terms of the minor adjustments, and the initial set up, but considering the pressures the NHS is under I am immensely grateful to have been provided with a wheelchair from them. Even if it isn’t perfect, it suits my needs better than the secondhand one I had, and I now know what to look for should I decide to go out and buy a better one.

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So I’m in a wheelchair, why can’t I wear a dress?!

The weather is gorgeous and I’m going out. I’ve got the clothes picked, a lovely dress I’ve had in my wardrobe a while but no opportunity to wear. But I’m going to be using my wheelchair. Shouldn’t be a problem should it? Wrong.

You see this dress sits above my knees. So to keep my modesty, not embarrass myself or give anybody a shock I need to sit with my legs together. Simple I hear you say? Think again. Have you ever looked at the position of foot pedals on a standard wheelchair? They’re not ideally suited to this. Take a look now:

Now do you see my predicament? The place I need to put both my feet is actually thin air. I could of course sit at an angle, squeezing both feet onto one foot pedal but I suspect after a while this will become uncomfortable. Another potential way round it is to sit with my knees together but feet apart; one on each foot pedal, but again this will cause pain after a while.

So what’s the solution? Should I not wear some of the lovely dresses I own simply because I’m in a wheelchair? Do I need to change my shopping habits and dismiss a truly nice dress simply on the basis of it’s length possibly being inappropriate to be worn in wheelchair? I hope not. Surely there has to be a way around this.

I suspect the solution is going to involve my family making modifications to my wheelchair…once we come up with a suitable idea! Watch this space.

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Parking Difficulties.

Over the years I’ve gotten used to the looks of disbelief when I get out of my wheelchair and walk a little, or even just the looks for being in a wheelchair. But these days when we go out in the car I’m getting a different look.

You see since 2010(ish) I haven’t had a disabled parking badge – at the time my renewal was refused – so we have to park in a standard parking bay. Not a problem in one sense; being in the wheelchair means it doesn’t matter how far it is to the shop, I’ll make it there. But in other ways it really is a nuisance. Besides people always give you looks of amazement or just strange looks when getting a wheelchair out of a car in a standard parking bay!

You see I’m not one of those people who will use a disabled parking space without a disabled parking badge. That infuriates me. I might have just cause to do so but it’s not the right thing to do. I won’t use a parent and child bay either even though it offers similar benefits to a disabled parking bay. Instead I use a standard parking bay and often struggle to get out of the car due to lack of space and endure bewildered looks from innocent passersby who can’t understand why I’m using a wheelchair but parked in a standard parking bay. It’s also been known for my Dad to reverse the car out of the bay to enable me to get out of the car more easily! But this means partially blocking the car park for a time and most often people are unimpressed!

A disabled parking bay provides extra room to manouvere in and out of the car. It can be quite a challenge to get out of the car in a tight spot when you have limited mobility. I know from experience. If you’re reading this and have a normal range of mobility, remember the last time you parked in a very tight parking space and had to get out of the car. Was it easy? I imagine the answer is probably no. Now try and imagine doing that when you’re mobility is limited; all your muscles ache like you’ve done a long workout, your joints are stiff and don’t want to move. Can you begin to imagine how difficult it is to get out of a car parked in a tight spot when you’re feeling like that?

A disabled parking bay is also positioned closer to the shops, right now this doesn’t really matter to me but when my health starts improving (and it will start improving) I need to park close to a shop to be able to walk round it. Otherwise I use all my energy walking from the car to the shop then can’t get round the store or back to the car. At that point I will have to use my wheelchair despite perhaps being able to walk around the store if I could park closer to it. Using a wheelchair when you’re unable to walk much is one thing, but to actually have to use it because you’re not allowed to park close enough to a shop to be able to walk round it is a bitter pill to swallow.

I didn’t choose to have limited mobility. I didn’t choose to need a wheelchair. When the time comes that I can walk more and get around a shop without a wheelchair I’d like to be able to have that option. I don’t want to have to choose to use a wheelchair so as to make sure I don’t make my health worse. If I push beyond my limits at that point I could end up in a wheelchair for years to come. Yet because I’ve been refused a disabled parking badge that will be the choice I have to make.

The trouble is that apparently, according to the refusal letter I received at the time of refusal, M.E. alone doesn’t meet the criteria for requiring a disabled parking badge. This is obviously a result of the lack of understanding about what M.E. is and how it affects people. It’s a debilitating, chronic illness that robs people of their mobility, their livelihoods, their careers, their dreams and ultimately a large part of their lives. Things like a disabled parking badge can make a huge difference to the life of someone with M.E. It can be the difference between being housebound and being able to get out in a wheelchair for a short period of time. It can make the life of someone with M.E. that little bit easier. Not only that but it makes the life of their carers easier too. I suspect most people don’t realise just how much of a difference that piece of laminated paper can make to a person’s life.

 

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