A Whole New World

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Tackling the world on a mobility scooter opens up a whole new world though I’m not sure it’s a fantastic point of view (see what I did there?!).

Suddenly you have to look at route planning differently, you’re no longer concerned about taking the quickest route or the most scenic route but you now have to plot based on drop kerbs and smooth surfaces (. You have to cross roads at crossings, you definitely have to wait for the green man, a path that seemed perfectly level you now discover has a severe adverse camber making you feel like you’ll tip into the road and suddenly every journey requires constant concentration and risk assessments.

I’ve also encountered a feeling I’ve never really encountered before: road rage.

As someone who doesn’t drive I’ve never really done the whole road rage thing but now the anger fills me regularly. The car parked half on the path outside the station blocking my way (& the driver looking massively affronted when asked to move), the cars pulling into ‘Keep Clear’ spaces/crossings/blocking the only drop kerb for what seems like miles! My other huge (& new) bugbear is able bodied people using lifts when there are escalators right there. Yes, I know some disabilities are invisible but the girl with the wheelie bag who then strutted down the concourse faster than my scooter on top speed (4mph I’ll have you know!) and yet almost made me miss my train by repeatedly delaying the lift or the group of gangsta bois getting off the DLR and not leaving me much room to manoeuvre really didn’t seem to need to use the lift at all, it just didn’t occur to them that I had no choice but to.

It’s literally something that occurs daily and as infuriating as it is the fact that I only noticed it once I was disabled does show me that it is born out of literal ignorance, not out of selfishness or malice.

There is therefore one thing I’d like to ask those able bodied people who might read this to do: next time you are out look down, notice how rare dropped kerbs are, how they are often still pretty high (which then either makes them insurmountable or causes jarring pain for the scooter/wheelchair user), notice how our choices of journey are limited, how blocking lifts or kerbs mean we literally can’t continue our journey, remember that we need the disabled toilets because we need the spacious cubicle for our wheels and need the rails to help us on and off the loo, it’s not that we don’t want to queue. I want you to notice all of the little choices that you have everyday, that you don’t even realise you are making and notice how they get taken away when you are disabled.

If the able bodied can start to see things from the eyes of those of us depending on our wheels then maybe we can all start making decisions to improve access and give the disabled back some of the choices we have lost because I think most of us have already lost enough.

Stubbornness isn’t strength.

As I’ve said previously I’m great at martyrdom. Even when my arms are burning from carrying heavy shopping I won’ t hand the bags over, I’ll grit my teeth and say “no, no, I’m fine.”

Stubbornness is my MO, it always has been, it’s in my birth sign (Taurean), my DNA (my mother can make my stubborn streak look more like a stubborn speck) and its in my nationality (the great British stiff upper lip). Therefore it should be no surprise that my stubbornness spills into my reaction to ill health.

I’m the annoying colleague who spreads my germs around the workplace rather than stay home with a Lemsip. I’m the person who will furrow my brow or rub my temples but decline your offer of a headache pill. I allow chest infections to become pneumonias before visiting my GP and once even had my manager put me to bed at work (I was a nurse) and busy himself with emptying my vomit bowls. I’m sure you get the picture by now, I struggle through.

Don’t get me wrong I love a good moan, I’m just not big on actually doing anything to change the situation. This is quite common in chronic illness, especially chronic pain, we normalise the symptoms. We don’t like them but we don’t do anything about the necessarily.

The first change I had to concede to came on my wedding day. I had bought the most beautiful shoes. Bought them well before we set a date. They were very sparkly, they were tattoo themed (very important given how much of my skin is adorned), they have been imported from America at ridiculous cost and they were high, very high.  Initially I thought I’d get round the height of the heels by only wearing them for the photographs or perhaps for the ceremony, but not the party afterwards. A week from the wedding I realised that my foot wouldn’t even bend in to a position to put the shoes on without being in extraordinary amounts of pain.  I had to relent. I had no choice. I spoke to my friend and I managed to borrow a gorgeous pair of silver and white Dr Marten boots. I made them my ‘something borrowed’.

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Another friend managed to lend me a cane so I could be a social butterfly at my after wedding drinks.  We had a perfect day as every bride should. I manage to stay free from pain until after the vows had been said. I pushed through the pain later in the afternoon with help of opiates and champagne. I was floating on air.

The next morning was a very different story; I was in agony, I could hardly move, barely walk. I couldn’t hide the fact that I was in a lot of pain no matter how hard I tried to blush my way through it. That was the first time I used the disabled toilet; asking the staff for the key as I simply couldn’t face the stairs down to the regular able-bodied toilets. I hadn’t quite planned on actioning the in sickness and in health part of our vows this early on in our marriage. I was basically bedbound for three days. Quite the honeymoon.

My husband and I shuffled things as much as we could. We asked for favours, switched round shifts I did everything we could to minimise my activity. It was all very makeshift, very ‘keep calm and carry on’ we just had to get things done until my pain and immobility passed.  Except it didn’t. If anything I was getting worse, not better and it all came to a head just before half term.

My son had a birthday party at friend’s house on the other side of town. It wasn’t much further than the usual school run but was still quite a long way. My husband dropped him off before having to go to work,  I was sure I’d be able to collect him. I hadn’t even gone a quarter of a mile before I realised that the pain in my legs wasn’t going to relent. But I’m stubborn, I thought I was strong and I could keep going. About halfway there and I started crying. The pain was too much. I couldn’t keep going. But I had to.  I felt so embarrassed, how could my legs be just not working? I’m 35 years old and used to walking around 6 miles a day, this was ridiculous. What if someone saw me? I needed to man up, I needed to collect my son. I wiped my tears just before I got to the house, I’d made it. As the birthday girl’s mum answered the door she could clearly see I was in pain. She looked at my stick and said “You didn’t walk here did you? You should’ve said, I’d have dropped him off. Do you need a lift home?” I burst into tears again. I did need a lift, I accepted graciously and something inside my head clicked into place; I wasn’t getting better and I couldn’t walk without significant pain and difficulty, and without then being housebound for at least a couple of days.

I knew then that I had thinking to do and decisions to make.