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Blessing 100 – 100 days of gratitude. April 9, 2012

Wow! When I started this blessing blog on 1st January I didn’t really think about getting to a hundred, despite deciding to do it every day for a year. The milestones don’t really occur to you, until you reach them. It’s been a challenge at times, not finding things to be grateful for; but finding different things to write about. The things I’m most grateful for: my Mum, my family, my home, my friends, my passions, they’re on going, I’m always grateful, at least I try to be; but keeping it fresh has been a¬† challenge; but it has also made me search hard each day to find something new.

Today Mum and I went into Norwich to do some shopping and visit the European market, which I think had a few British stalls, we ended up buying bread and cakes from a baker from London, I felt a little cheated! I did get a real French crepe with caramel which was gorgeous; but extremely messy to eat without cutlery, sheltering from the rain in the Royal Arcade. It was a little embarrassing sitting in my wheelchair, scoffing a pancake, in as discrete a manner as possible, while shoppers walked past; but I enjoyed it, so who cares?!

I was delighted because I managed to get a cake stand to complete my set from Lakeland. They’d sold out online and only had two in store, so I was really pleased. I’d got the large stand for Christmas and the cake store for my birthday, it’s cream china with little heart cutouts – really pretty and totally me! You can see it here http://www.lakeland.co.uk/43182/Amore-Ceramic-Two-Tier-Cake-Stand

Mum and I even stopped off at the new cafe in M&S which was great – I loved the concept of them serving the food you can buy down in the shop. I don’t know why I’d never really thought of it before; but it’s a great way to promote the products you already sell, showing people what they can do with them.

It was the perfect end to a really great Easter weekend and one I’m sad to see over.

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Blessing 64 – My wheelchair March 4, 2012

At the moment I’m all about embracing the good things in my life. I never imagined that I would be grateful for my wheelchair; but when I truly think about it I am. My wheelchair is not my illness, it’s an obvious sign; but it’s not an extension of the ME, it’s just the tool I use to be able to get around. For that reason I can see it as a blessing. Without it I would not be able to go very far.

When I first got a wheelchair I hated it with a passion, I was convinced that everyone was staring at me, judging me for being in it, questioning why a perfectly healthy looking fifteen year old was sitting in an old lady chair. The truth is there were lots of looks, people do stare, they do a double take, a quick glance or sometimes a full on gander. It did make me cringe, creep down in the chair, try to shrink away and become invisible. When I saw people my own age, especially guys or groups of girls I literally wanted to vanish, to cease to exist. Nobody ever said anything; but you can communicate a lot with a look, even if the glance was between them and not aimed directly at me.

The absolute worst thing was seeing people who knew me from before, the looks of pity were like knives through my heart, reinforcing how far I’d fallen from the life I used to love and how bad my reality had become. I’d get Mum to avoid people if we saw them coming, changing direction, ducking behind displays, just to spare myself the hurt.

At that time I wanted to avoid going out, so that I didn’t have to go through the humiliation; but then I got so ill that I could even get out of bed, let alone go anywhere. It was then that I longed for the chair, would have done anything just to be able to go out in it again, no matter who saw me.

My attitude to the wheelchair changed completely once I started being able to go out again, after six years inside. I was eager, excited even and I didn’t care who saw me. In fact I was pleased to see people.”Look at me, I’m out again. I’m getting better!”

That’s not to say it was easy, at times I felt completely invisible. Guys do not flirt with girls in wheelchairs. It’s only happened to me once and I was so stunned I wasn’t sure what to say; but I managed! ūüėČ I know the difference because I can sometimes go a short distance without the chair and it’s like suddenly you’re visible, people take notice, they make eye contact; but as soon as you sit down in the chair, their eyes slide over you like you’re just a piece of furniture. That’s hard.to get used to. Reassuring when you’re having a bad day and look dreadful; but not when you’ve made an effort and want to feel good.

That’s not the wheelchair’s fault though, that’s just society. The wheelchair has become an asset, as valuable to me as a car is to most other people. It helps me get from A to B and without it I would be lost. I never imagined I would count a wheelchair as a blessing; but maybe my outlook on life really is changing and I can appreciate things for the benefits they bring in to my life, not what they represent to other people.

 

Blessing 29 – What makes a great shop? How it affects on enjoyment and disabled customers. January 29, 2012

Following on from yesterday’s topic of what makes a great meal out, today I’ve been thinking about what makes a great shop? Mum and I popped into the city to do some retail therapy, well that was the plan at least. I didn’t actually buy anything; but I did collect my lovely free sample of Shea Butter Hand Cream from L’Occitane – how on Earth do you pronounce the name of that shop? I think I say it differently every time.

We went into one department store and it was the first time I’d been in there for years. I have to admit to being a little disappointed, as it was a nightmare to get round in a wheelchair. The stock was much too close together and on multiple occasions we had to reverse and go around another way. This drives me nuts! I believe that every shop owner should be forced to go round their store in a wheelchair, just to see the hazards and difficulties that it presents to their disabled customers. Other shoppers, with their sharp elbows and bags, are bad enough; but when shelves, racks and precarious stock is at risk of taking your eye out or just halting progress completely, it makes the whole thing a difficult experience.

Anyone that’s ever been in or pushed a wheelchair will know that they are not the most graceful of things and despite my Mum being a very capable driver in a car, I’m not sure she’d pass her test if it was required for pushing a wheelchair. We’ve removed a fair amount of paint in our time; but when it’s due to a badly arranged shop or a nightmare door I don’t feel too guilty.

When we did manage to get around the shop, I saw that they had so much stock, I wasn’t sure where to look, not in the “oh wow this is so amazing”¬† way; but more in the “my senses are on overload, I feel like I’m looking at a Where’s Wally Puzzle” kind of way. The thing that frustrated me was that there were so many things I know I would have loved, if it had been more spread out and/or better displayed. I understand the logic that they are trying to fit in as many products for as many people as possible; but for me it just didn’t work.

Which brings me to my point, what makes a great shop? One that you walk into and just have to buy something, everything, as much as you can afford. I’ve been into shops like that, where I can’t wait to go back and buy more, somehow it’s set up to sell.

There’s one example that comes to mind. A few months ago Mum and I went to a local Waitrose. Going in, the atmosphere just felt wrong, nothing was in the place you would expect, it was difficult to find anything and the whole shopping experience didn’t seem to flow. It was disjointed and uncomfortable and we didn’t buy very much – great for the bank balance; but not for the shop, or for us, we felt cheated out of a fun shop (I love food shopping, I’m “different” I know).

Just before Christmas we went back again and the whole shop had been refitted and reorganised. The only word for it was WOW! It was like being in a completely different store, the shelves and locations of the food made sense, we were happy to browse the aisles and it was as if we were led from one section to the next and all we wanted to do was pick things up and put them in the trolley. Products seemed to jump off the shelf, begging to be bought, they were even giving out free samples of cake! Seriously how much better can it get?! The cook ware and gifts section was beautiful, colourful and light. Everything was inviting and I wanted to spend money, in the end I had to resist so many things; but I came out feeling happy and satisfied after a really good shop, you know what I mean, you come home smiling, everything feels right with the world.

I think that a great shop has a good lay out, well spaced for wheelchairs (or prams/pushchairs for that matter), it must be light and airy. You need to be able to see what you’re looking at and it needs to be displayed well, in a way that makes you want to reach for a product, not be scared of knocking over the display. There has to be a flow to the shop, products need to be seamlessly arranged from the entrance, drawing you deeper into the shop, like a maze leading you further and further in to the treasures waiting at the centre.

If I’m in a shop, then I’m there to spend money (I hate window shopping, so depressing). I’m there because there’s either something I’m looking for, or I want to treat myself or someone else to something. Give me reasons to buy, encourage me in my decisions, make it easy for me to part with my money, because if you don’t Iwill be leaving empty handed and I won’t be rushing back.

 

Wheelchair Ninja September 24, 2011

Today I went to an event where there were lots of people – never fun when you’re in a wheelchair, permanently at the same level as people’s bums, elbows and bags – not sure which of those is worst. It can be incredibly claustrophobic being surrounded by people and not being able to see where you’re going or at times even move, while everybody else pushes and shoves around you.

I think we might have accidentally run over someone’s foot; but the way the guy acted, you’d have thought we were some kind of stealth ninjas, who’d set our sights on him and were there to bring about his downfall. It was if I’d drawn a knife and started to remove one of his kidneys, instead of making a slight miscalculation in manoeuvering – harder than it looks when being pushed in a wheelchair. When you get crushed in a melee of people, it’s hard to see who’s ahead, let alone who’s going to suddenly stop walking or cut in front of you, or where people’s feet are.

Mum and I both ended up feeling extremely guilty and uncomfortable, like we’d committed some terrible act, when it was just an accident, with no malice at all.

Personally I’d rather have a wheelchair run over my foot because at least it means I’m walking around the event and not being pushed like some kind of adult baby.

 

Accessibility FAIL May 2, 2011

Accessibility FAIL buttonThis is a¬†fantastic post for BADD2011 and made me smile; but in an ironic, this is so sad kind of way. It comments on so much that is true; but you only know it, if you’ve lived it, first hand or because of a close friend or relative.

My addition to the accessibility¬†FAIL is shops that put aisles too close¬†together or have¬†dangerous shelves, rails, coat hangers or anything that could generally take out an eye. Negotiating shoppers with bags, baskets and trolleys¬†is bad enough; but when the furniture can give you an extra disability you start to feel like the world’s out to get you! Seriously we have enough to deal with, just because you’re trying to squeeze in some extra stock to make more money, just think how much you’ll be sued for if someone gets injured.

 

Blogging Against Disablism Day. Invisible illness – Just because you can’t see it, doesn’t mean it’s not there. May 1, 2011

When I first decided to take part in this I had no idea wha I was going to blog about; but I decided to write about invisible illnesses, something that I know a lot about, living with ME. Not all illnesses or disabilities come with spots, scars, plaster casts or even wheelchairs. Yes a lot of the time people look really ill; but that’s one of the cruelest parts of invisible illnesses, you often look totally normal, 100% healthy, therefore you must be faking – right?

My experience comes from ME, when even at 0% and unable to get out of bed people still told me I looked well. Or the classic, “You don’t look sick.” It’s enough to make your blood boil! I know it doesn’t make sense that I can look so well on the outside, when I feel like my body is falling apart on the inside. It would be easier if the outside matched the inside; but then maybe that would be a little too scary!

When you see me out and about, you haven’t seen the days and weeks of¬†resting I’ve done to be there. Or the hours I will spend asleep as soon as I get home. You also can’t tell I’m in pain or feeling sick with tiredness, because after all these years I’m good at hiding it. A skill I developed because I don’t want the people I love to know just how much I’m suffering. They can’t help, so why should I hurt them more? When you ask me how I am, I’ll tell you I’m alright, because it’s easier than listing all my symptoms and watching you glaze over or ask if I’m depressed – which for the record I’m not. Amazing huh, being this ill and not getting depressed; but at least that’s one thing I have going for me!

I’m not alone though, I’ve talked to people with other conditions like MS, arthritis and¬†Fibromyalgia, who all report the same thing. Even parents of children with learning difficulties have commented that it’s really hard when their child suddenly appears to be “having a tantrum” and the judgments they get from people around them, assuming their child is just badly behaved.

Why is it that people only believe what they can see? We wish we had an outward sign of the physical pain and illness that is going on within us, it would make life so much easier if we could point to something and say “Look, here it is, this is what’s wrong with me”. Or to have to sit and do an injection or take lots of big pills. Even using a wheelchair doesn’t always help.¬†The times you get out, to sit in a chair or when the curb is too high to get up, you get a range of looks from disbelief, to shock. I just want to say “No you’re not witnessing a miracle, not all people in wheelchairs are paralysed”.

I’m not saying that because our illness is invisible that we suffer worse than other people with more accepted conditions. All I’m saying is that there’s a¬†whole extra battle you have to fight, just to find acceptance, from not only family and friends; but the medical profession and even strangers. Oh for a badge to carry around to prove your credentials as a certified ill person, unfortunately like the illnesses, the chips on our shoulders and emotional scars are invisible too.

 

Who is the last person you‚Äôd want to be stuck in an elevator with? And why? April 3, 2011

Filed under: Life,ME,Post a Day 2011 — Claire @ 11:01 pm
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Topic #89 Who is the last person you’d want to be stuck in an elevator with? And why?

The last person I want to be stuck in a lift with is someone who acts as if I’m taking up too much space in my wheelchair and intentionally making their life difficult. I mean seriously lifts are for people who have got too much shopping right? Not for people in wheelchairs, there ought to be some other way for us to get round! I hate to be stuck with that same someone, who doesn’t care that their bags of shopping are sticking into me and that I have to bend out of the way¬†to avoid getting poked in the eye, while ignoring their glares reflected in the massive mirrors behind them and ignoring the mutters.

Most people are lovely and helpful when I’m in a lift; but for those few I hate to be stuck with them! You want to say something; but know it will only make a bad situation worse. Though if I accidentally bump into your ankle or run over your foot, please don’t blame me! ūüėČ