Getting your head round it...

This has taken me a long time, and I still don't think I am fully there!

Some folk are born disabled, some folk become disabled very suddenly in an accident - these are probably the two most recognised routes or paths or er, reasons, for disability.

Some of us got here a third way though, gradually conditions we have, that we may not have even realised we had, creep up on us.

Slowly over a number of years, it sneaks up, stealing away the things we can do, and messing with our heads.

This is basically what happened to me. As a child, I was, not actually fat, but fatter than my younger sister, solidly built shall we say.

I was slow at physical exercise, and generally the one at the back squawking 'wait for meeeee' pathetically. I was also the one guaranteed to turn an ankle or fall over.

Fast forward through a childhood of being called 'chunky' and believing I was an idle lard-arse, but also a childhood FILLED with active outdoor pursuits - caving, rock climbing, canoeing, swimming, horse riding, archery, hill walking, mountain hiking, skiing...

I end up a teenager, struggling with physical stuff but still firmly of the belief that it was due to being a greedy fat idle pig.

By the time I hit 19, I was really, a greedy fat idle pig - I did eat crap, I was very fat, I had basically accepted that thats what I was and it was all my own fault and it was past the point of doing anything about it.

Though when I joined the gym one year, I went daily, for 3 hours a day, doing 100's of crunches, all the weights machines - found aerobic exercise very hard though (running, cycling, rowing).

Didn't get appreciably thinner, despite nearly a year of the above. Must just still be a fat idle pig then.

My mobility reduced, my ability to stand for long periods reduced. My ability to walk and stand for short periods reduced, but this all crept up on me slowly. So slowly, I didn't realise it wasn't actually my choice.

I stopped going shopping in town with friends, 'because the inside of shops makes me want to kill people'... I stopped walking my dogs very far because it hurt, instead I took them to a local park we could drive to, and I could sit on a bench.

One time I took a train to London - I nearly passed out in the carpark of Piccadilly Train station in Manchester, trying to drag my luggage up the hill, rushing so as not to miss my train. I actually thought I might die.

The many many long staircases at various Underground stations once I got there were hell, again, black spots danced before my eyes and I thought there was a damn real chance I'd pass out and fall on the folks behind me, squashing them to death.

Finally, aged 28, I found it so difficult to get up my own stairs I needed a rest half way up...

"Thats it", I thought... " I have finally gotten so fat I am going to die".

A good friend dragged me to a GP. I staggered in wheezing, my back killing me, gasping for air that seemed to do no good once I dragged it into my lungs.

By this point, I couldn't stay awake more than 8 hours a day, I was falling asleep the moment I sat down on the sofa. I felt so heavy inside, and lying down to sleep resulted in endless coughing and choking.

I had palpitations and periods of tachycardia, but the GP told me to go for a walk and gave me some sleeping pills, claiming I was just having panic attacks.

One night my boyfriend had to seriously shake me awake, I had stopped breathing in my sleep due to the sleeping pills.

My friend dragged me back to the GP who was not interested in the slightest - 'go on a diet' she said, without even looking up from her desk.

That friend saved my life, I firmly believe that - she took me out of there and straight into the next GP's in town, registered me and wheeled me in as an emergency to see my new Doc.

He spotted the water retention immediately - and the diuretics took the pressure off my lungs and heart, allowing me to breath.

Unfortunately, it took him a further three years to spot that I had heart failure (even laughing it off when I suggested it), and another year after that to agree that I did indeed have hypothyroid.

It would appear, though I am currently battling a Rheumatologist, that I have a connective tissue disorder - most probably Ehlers Danlos type 3, which means some joints are hypermobile, my heart has 'stretched' effectively, meaning that my mitral valve leaks, sending blood back where it came from.

I have a huge collection of symptoms, some of them historical - I was actually born this way, and all my struggles as a child to keep up with my family and peer group relate to this condition.

I'm now 33 - I still don't have a proper diagnosis for the connective tissue disorder, because the NHS doesn't really see the need to give me a label for what's wrong. I disagree and that's an ongoing fight!

Over the last five years, I have slowly come to terms with accepting that I am 'a disabled person' - it's been a weird ride if I am honest!

On the one hand, some aspects are infuriating - discovering just how much of the world actually makes me MORE disabled, just because no one 'thought' to do things or build things in a way that would make somewhere accessible.

For instance, public footpaths - so many have pedestrian kissing gates - for the want of a RADAR lock and the ability to open the gate the 'wrong' way - I am denied access to many miles of paths. The sight of a stile where there is no need for one sends me practically demented!

There's other examples of thoughtlessness. Every NHS leaflet about living with heartfailure, is designed with the over 70s in mind. Pictures of cheery faced white haired grannies, advice to 'potter' in the garden or take up knitting.... I appreciate that not many people in their early 30s have heart failure, but actually there's a LOT of young people with heart problems, why not make all the leaflets feature people less obviously ancient! Or feature a range of ages?

The next huge mental obstacle in my life is using a wheelchair.

Thus far I have refused, point blank, except when I have to trek long distances across hospitals - then I will use a patient transport wheelchair (which are designed so that anyone pushing crashes you knees first into walls and doors!).

A short walk (using my stick) in Worcester the other day though demonstrated to me I really do need my own chair. I managed about 20 yards, in pain and using the stick, but when I turned to come back again, the length of time it took the pedestrian crossing lights to change, was just too much.

I ended up hugging the pavement, having slithered down the traffic light pole, in absolute agony.  Car drivers peered at me, people pointed and stared - the only person who asked if I was ok was a lady probably in her early 100s, who walked worse than I did! Obviously I couldn't ask her for help so I said I just needed to sit for a minute then I'd be fine - and eventually I did scramble off the floor and get over the road.

So - wheelchair is ordered, and next I'll need to get my head around actually using it.


One of the biggest headfucks for me, is that when I DON'T attempt to actually DO anything, like now, sat here writing this - I feel pretty much ok. I have some back pain, some joint pain, but otherwise, I feel pretty good really.

If I attempt to go and make a cup of tea in the kitchen though, I'll be in pain, so strong I can't stand before the kettle has boiled.

Going upstairs for a wee (which I do on average 20 times in six hours when I take my diuretics), I have to plan to stop half way up each time, I arrive at the loo out of breath and dizzy, and I can't count the number of times I have peed myself because I was too knackered and weak to move my arms to drop trou and turn around!

The net result of course is that most of the time, I feel like a total fraud. Sat on my mobility scooter and, shortly, sat in my wheelchair, I feel ok. I am capable of getting out of the chair/off the scooter, walking a pace or two, reaching for something off a shelf...... but I am not capable of doing that for more than a minute or so without being out of breath and dizzy and in extreme pain.


I worry what the world thinks about this - they just see a fat girl on a scooter, they will see a fat girl in a wheelchair who... can GET OUT OF IT... omg!

Our world mainly expects that people in wheelchairs stay in them, cannot get out of them, do not suddenly stand up...

I shouldn't really give a flying one what the world thinks, but its pretty hard not to at times!