Smiling Clare

Living Life, Within the Limits of Chronic Illness

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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Time for a bit of an update

It’s been a good few months since I posted an update of how I am and what has been happening. So I thought while I’ve got a bit of energy, and some quiet time I would do a bit of an update.

A lot has happened in the last four months or so since I last properly blogged. In that time my health has been rather up and down, and the summer heat here in England was quite a challenge to cope with given the heat intolerance that I suffer from thanks to M.E.

I got my wheelchair from wheelchair services in mid July, and have started writing a post about my experience with wheelchair services which should be ready to be posted very soon. Although not perfect by any stretch of the imagination, the wheelchair provided supports my body a lot better than any previous wheelchair I’ve had. There have been a few niggles but these can be lived with and are much better than being trapped in the house; which without a wheelchair I would be.

I managed to have an afternoon out at the coast during the summer too, it was lovely to be out in my new wheelchair giving it a proper test run. And for once we made it to the coast when the weather was actually nice; although to be fair there wasn’t a lot of bad weather to be had over the summer this year!

The heat though was especially difficult to cope with, and some days it was just too hot for me to be outside, even in the shade. And so I spent many days inside doing my best to stay cool in front of the Dyson fan. Possibly the best thing I’ve bought this year as it has been an absolute god send during the hot weather, where previously the entire family would have to do without a fan because the movement of a standard fan makes me feel sick and dizzy, and the noise of a tower fan is too loud.

Thankfully the weather cooled down a little in August when I had to travel to London by train to Kings College Hospital. Again there is a post in the making with details about travelling by train using a wheelchair. This was the most frustrating and disappointing day I’ve had in the past four months, as having travelled all that way, with a few difficulties during our travels, I arrived to find my appointment had been cancelled because it was with the wrong doctor! They had sent a letter out to inform me of the cancellation and my new appointment date the week before (which actually arrived at home while I was being told this at the hospital!). So now I have an appointment booked for the end of May next year; that’s the earliest one available with the specialist clinic I need to see apparently. The only good thing to come from the London trip, other than the obligatory McDonalds (family tradition from previous London hospital trips!) and the experience we gained in managing a wheelchair on trains, was that I got the details required to request transport for the appointment in May. So hopefully there will be no more train drama, and the trip will be a little bit easier on my body, as I struggled with the crowds, the noise of the underground particularly, and the stress of finding the right trains when we had to make all the changes required to get there!

September saw an appointment with the Occupational Therapist at the CFS Clinic. Now this was an appointment I was dreading, after my experience with the consultant there back in May. However it went a lot better than expected, and I’ve been managing the very gentle stretches she has given me to do each day. I have another appointment in the coming week, so we will see how things progress. I’m still a little on the wary side but at the first sign of things worsening I will stop.

At the moment life isn’t proving to be particularly easy. The waves of fatigue hit earlier in the day than I’d like, and the pain some days is ridiculous. I am however coping, and managing to do a few bits and bobs like blog, knit and even read a bit of a book as long as I’m careful with how much time I spend on each one.

There’ll be more from me soon, all being well.

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Welcome To My New Blog!

What can I say? It was time for a change, and a bit of a challenge; I wanted to put some of that knowledge I gained doing my degree to some use, and learn some new stuff too; so here I am! With my own domain and a blog powered by WordPress.

I’m still getting my head around some bits and pieces, and it is still very much a work in progress but it’s getting there.

Anyway, WELCOME to my new site, I have managed to import all my previous posts from both my blogs; A Life Within An Illness, and Life With Me Doing A Degree, previously hosted on Blogger. I have tried to make sure the links in these posts now link to the appropriate posts on this site but I may have missed a few; fortunately I’m leaving the blogger blogs as they are (just not adding to them) so those links should work for the forseeable future at least.

Feel free to take a look around and get in contact as usual. Links to ways you can contact me on social media are on the right-hand side, and if that’s not your thing there is a contact form at the top of the page; just click Contact Clare!

I hope to do a bit of an update, and get back to blogging more regularly very soon!

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