Living Life, Within the Limits of Chronic Illness

Category: Wheelchair Page 2 of 3

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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RHS Garden Hyde Hall

Well another thing has been ticked off my summer bucket list. A visit to RHS Garden Hyde Hall. It’s the first time I’ve been to anywhere like that but I wouldn’t hesitate to go again especially if I had a bit more mobility and independence!

It was lovely to spend the day with my family in such beautiful surroundings and get to indulge in a bit of photography too. Getting there was a bit of an adventure, since it isn’t signposted that well from the main road. However after getting lost once, with a bit of help from the magic smartphone of mine we found the entrance.

Despite the overcast slightly damp start, our optimism for brighter weather paid off and the sun started to break through the clouds. So our raincoats were unnecessary in the end.

The gardens at Hyde Hall are magnificent. I could have spent much longer there taking photos if I had the energy and was a bit more mobile. It was a bitter sweet experience for me in one sense; I loved being out and really enjoyed myself don’t get me wrong, but it also reminded me of my limits. I was in my wheelchair, which meant taking photos required me to ask Dad to stop pushing me or move me to a certain position so I could get the shot I wanted. If I’d been more able I wouldn’t have felt such an awkward ol’ so and so!

We went up to the gardens in the mobility bus (not it’s actual name but that escapes me) because the route up to it is rather steep. My wheelchair managed the gravel topped pavements quite well, although our route round was a bit hit and miss as to whether we would encounter steps or not; these weren’t marked on the map and even if they were I doubt we’d have worked out which route of the map we were on; our map reading skills were not much use in working out where we were in the gardens!

We got back to the shop area on foot (wheels for me) down the steep hill and had a picnic in a picnic area not far from there before setting off on the journey home. All in all we had an enjoyable time there, and like I say I’d like to go back when I’m more mobile and possibly in a different season too. Simply because I love taking photos.

I took over 200 photos on the day so I’m not uploading them all but here’s a select few photos of our time at Hyde Hall for you all to enjoy:












That’s all from me for now, I’m off to continue resting after that mammoth trip out. It never fails to amaze me how tiring just going out for the day in a wheelchair can be!!

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Soo got some good news to post…and about time too!

I’m making improvements. Pain is easing a bit, apart from the odd clicking joint and a wisdom tooth coming through. Oh the joys of having Amelogenesis Imperfecta, tooth sensitivity is immense and it’s only just breaking through the gum! Anyway, other than the wisdom tooth things are generally improving. Sleeping better is helping lots as well!

For the past week or so I have been managing to get about inside the house minus the crutches!! Still grabbing onto furniture occasionally to steady myself but it’s progress! Also started slowly walking down the stairs on good days – giving my bum a much needed rest from bottom shuffling! Don’t dare to do it when I’m not feeling particularly good though. And I’m still using the crutches in the garden where there is very little to grab onto should I need support…learned a while back that a wire fence just goes down with you! Haha.

Also got some great assignment results which really surprised me! See my other blog for details:

In other even more exciting news I’ve met someone special and hope to meet up and go out with him properly soon. Never did I think it would be possible given the situation I’m in with my health, being stuck in the house most of the time it seemed impossible. But I’m very lucky to have met someone, especially someone who understands this illness as well.

Another bit of good news is I’m in the process of ordering a new lightweight wheelchair as I really dislike the one we have at the moment – every bump in the pavement is really noticeable so it makes any trip out even more tiring. Fingers crossed it means I’ll be able to get out a bit more!

All in all life is on the up, I’m so happy at the moment even the situation with my neighbours isn’t getting me down! In fact I think I’m annoying them by going about in the garden so happy, but tough luck – my garden, my life, I’ll smile all I want! 😀

Anyway that’s all for now, (I think) hope to be able to update this blog a bit more as I continue to improve.

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