When I was 17, it was a very good year.

I haven’t driven since the last time I blogged.  I was so hyped after such a good afternoon, feeling like my Old Self that I was determined that this was the start of me driving every weekend from now on.  Unfortunately my body has had other plans since then and I just haven’t been as sharp as I like to be when I am going to drive.  This weekend I am nursing a stiff neck and wondering when I will actually get back into my ‘mobile retreat’ again!

I started learning to drive when I was 17 and took my test just before my 18th birthday, which I passed first time.  I used to love driving – I’d pack my riding gear on Saturday and Sunday mornings, scoot off to the stables for an hour’s ride then head home or maybe to a local beauty spot.  I was also working full time, again driving myself to and from work every day.

In 1994 we moved to another part of the country and I lost my job, but kept myself occupied with various college courses.  I walked quite regularly until it became painful, and I slowed up on that and eventually stopped, becoming a full-time wheelchair user just so I could get on with my day.  Still I had the feeling that I could get on with doing whatever I wanted to do ‘just like that’.

In 2000 I started a job at the local council.   I was there as part of a training scheme first whilst studying and HND in computing and found that I couldn’t manage college and my work placement full time, so I limited myself to two days at work with one day at college.  Then, realising I was on the wrong college course, I quit and continued to work two days a week.   I worked freelance, so I could manage my own days, do more if I wanted to one week so I could save up more money for a holiday with my family at Christmas.  That job ended in 2001 and my life slowed right down again.

In 2005 I came back from a music festival and felt like I’d been hit by a truck (or two) for a week, but I recovered.  After that I noticed that I couldn’t just ‘bounce back’ after a period of intense concentration or activity.  I didn’t know it at the time, but ‘The Spoon Theory’ had become relevant.

In 2007 I started my Art degree, that’s when things – if you’ll pardon my vernacular – really started to go down the shitter.  I was only there two days a week, but the concentration was so intense and my ‘days off’ so filled with thinking about the course, reading texts connected to it, or actually making things that I was flattened by Friday night and wouldn’t really feel human again until Tuesday and on Wednesday the whole cycle started again.  I don’t mind telling you that I came very close to cracking up a few weeks into my 2nd year and nearly left that Christmas.  But I kept going because my pride got in the way – I wanted that degree as a matter of principle – and I STILL hadn’t made the connection that maybe my energy levels were shifting into a different gear as I got older.

When I finished my course, I was so happy. I thought that finally I was going to get some rest and REALLY snap back into my old self.  Wrong!   It soon became obvious that there is a debt to be paid every time I choose an activity – weather it’s driving my car, making jewellery or just having a night out with friends, it all seems to add up to a lot of work for my system.  It’s only now I’ve started realising just how many processes are involved in holding a simple conversation in a noisy room.

The person I am on the inside still has all the enthusiasm of 17-year-old me but the body just doesn’t comply, and it’s bloody infuriating!   You expect to feel like this at 60, maybe but not thirty-sodding-eight!!

It’s making me look back on my past and mourn it.  If I had known at 17 that in 2005 – at 32 – I would be starting to experience these restrictions I would have done so much more with my time, with my life.  This weekend I’m missing a music festival with my friends because three days of that kind of activity would have floored me completely and there was only one band I really wanted to see anyway so I was better off waiting to use all my spoons on that band the next time they tour themselves.

This sucks!  I don’t like compromise, I don’t like having to wait for a ‘good’ day in order to do the fun things other people take for granted and I do NOT appreciate the lack of control.

But, compromise and patience are things that I’m just going to have to get used to.  Who knows? Maybe I’ll finally grow comfortable in this new skin and accept myself as a disabled person?

We’ll see.

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