Saturday, 24 October 2015

My disability does not define me.

As a child I'd walk for miles and miles. I'd leave early in the morning, long before most people were up and stay gone until the evening when dinner was served up.

I explored beaches, clifftops, fields and downs normally with a pack of dogs in tow, but what I never did was stop to imagine what would happen if this one great pleasure of mine became an impossible task.

And then it did.

When my son was being born in the early hours of the morning, on September 27th 2006, my mind was awash with all kinds of emotions, the greatest of which was fear.

Could I do this? Could I be a mum? Did I have what it took? What if I held him wrong? bathed him wrong or couldn't sooth him when he cried? What if I let him down? Or hurt him without meaning to?

No one wants to fail especially when it comes to our children, but the fears that we might are there nonetheless, from the minute they are conceived or dreamed into reality.

What I didn't know then was that I was about to make a choice that would change my life forever.

Fifty-three hours. That's how long it took for my baby boy to come into this world after my contractions started.

I spent a fairly large amount of that time, sucking on gas and air while questioning relentlessly the mystery of just who had switched the radio on despite, apparently being told repeatedly.

It was hard going and incredibly slow and as another night began to slip into another day,  my exhaustion continued to grow.

The midwives began to worry that if it went on much longer, I would be too tired to push when the time came and it was at this point that the big scary word I had been dreading started to be thrown around.


And so began one of the most frightening discussions of my life.

Now, I would like to take a minute to point out that every single person in that room, genuinely believed that in convincing me to have an epidural they were doing the absolutely best thing they could for both my son and me and it is impossible to say what might have happened, if they hadn't succeeded in persuading me.

To sit here and ponder what if's, is a pointless task that I know from experience, only leads to anger and regret that is pointless and does nothing, but make life that little bit harder.

The reality is that at the time an epidural really did seem to be the best approach and as scary as it was for me, given my massive phobia of needles, there is no denying the sweet, heavenly relief it brought me and the deliriously exquisite blessing of a few pleasantly pain free hours of sleep that I so badly needed to recharge my body, in readiness for the final big event.

From there on out, my labour was a breeze and fifty-three hours after the pain began my son was born, the most amazing, beautiful little baby I have ever seen.

We were in love, my husband and I. Completely smitten, yet still completely and utterly petrified.

Life went on as it does, with barely a thought for the epidural that had helped me to deliver our son into the world.

We learned to do all the things that I had been so nervous about, we enjoyed our son and we enjoyed our new status as a family of three in ignorant bliss until... something strange began to happen.

It started out as  a very small, yet decidedly sharp, almost electric shock-like sensation in my lower back, right at the point where the needle had gone in and it usually occurred when in the car, traveling along bumpy country lanes.

It wasn't pleasant, but it didn't last long and so I dismissed it.

Then I began to get pain in my lower back, again at the site of the epidural, whenever I was on my feet for a long time, but again I dismissed it until eventually dismissing and ignoring became a huge part of my daily life.

Years would pass with my mobility slowly decreasing more and more, while my anxiety levels steadily increased.

By the time my son was just a year away from starting school, I was barely leaving the house. You see it was easier to avoid doing anything that caused me too much pain than to deal with the reality of my situation.

So we signed my son up for playschool and suddenly I was tasked with getting my son to the bus stop every morning and collecting him every night.

Not being able to drive, this was a task that had to be achieved on foot. It shouldn't have been a big ask, it was five minutes up the road. Nothing in comparison to the miles and miles I covered as a child with my dogs. In fact, it didn't even come close to a mile, not even when the whole trip was combined and yet I couldn't do it, not without agonizing, back breaking, spend three days on the sofa to recover pain.

Now when my pain was only affecting me, it was one thing, but when it started to have an effect on my son and what I thought he needed, it suddenly became something I just couldn't ignore anymore and so began one of the most difficult emotional journeys of my life, because coming to terms with a disability, especially when there seems no hope of fixing it, is really tough.

Essentially, what you have to do is relearn everything you were ever taught. Want to walk to the bathroom. Fine, but you can't just walk there, not if it's a bad day, you have to plan it. That goes something like this...

Do I think I can make it there in one go?


Is there a chair in the hall that I can sit on?


Is there going to be a cat on the chair that I am going to need to remove in order to sit down?


Will my son have left something on the chair that I will need to remove?


Will my son have left toys all over the floor, in the hall that I will need to move?

Quite possibly.

How fast will I need to move between here and the chair in order to make it before my pain gets too much and my legs start to go weak?

Your guess is as good as mine.

Now this might seem silly, if you don't live with chronic pain, but when you do and it is like mine, these are all questions that you are constantly having to ask yourself and think about, because the tiniest thing can make a huge difference on whether or not you make it to that bathroom coping or you make it there in tears and there are times, when I haven't made it there at all, but instead slumped in the hallway chair silently begging for some magical relief and forcing my bladder to wait for just another half hour, until I feel able to move again.

I saw a quote today and I don't know who originally said it (if you do please feel free to let me know in the comments,) but it was this...

"If I woke up without pain, I would think I was dead."

And I read that quote, having just got back up out of bed, after failing to get to sleep, due to my own pain being too much tonight and I thought. "Yes, that's it. That's so true. That's exactly how I feel." 

Because, for me the pain is always there, it never goes.

Some days it is a little better than others, but it is still there none the less. Dictating what I can and cannot do.

It is my life. It is my reality, but and here is the important part. It does not define me.

I am not just a disabled person. I am not just that big girl in the wheelchair or the one with the mobility scooter.

I am a mother, a wife, a writer and so much more besides. My disability is just one part of me, it isn't all of me.

Realistically, nearly every single one of us will at some point in our lives be faced with an injury or illness that in one way or another will leave us unable to function in the way's that we are used too and if by some miracle or incredible luck we are able to avoid that and live to a ripe old age, then the chances are, that with that aging process those lucky few will still come to find themselves in their final years, in a position where they can no longer function in the way that they once could.

Did you know too, that statistics show that most families in the UK have at least one member who is classed as disabled?

So with that being the case, why are we still trying to define people simply by their disability. Surely, most of us know someone who is disabled and can see that they are so much more than just disabled.

It took me years to come to terms with my disability and there are still times when I struggle. By showing a little more understanding and respect to those who have a disability we can all make it that little bit easier for those who, due to illness or injury, have to live their life in a slightly different way, from what is considered the norm.

because the reality is, you never know when you might find yourself in our shoes.

If you've experienced a period of your life where you have had to learn to live in a slightly different way or like me you've had to learn to cope with a disability long term, then please feel free to leave a comment below, sharing your story because I for one, would love to hear what you have to say.

Love and hugs all
Joss xx


  1. Your words are so true. I think you are amazing for sharing your story. Not just that, but setting the record straight. You are definitely more than your disability. I'm currently struggling with stiffness and soreness in my fingers and wrist and I fear what would happen if the pain doesn't go away. If the condition is permanent. You are wonderful. Wishing you and your family well.

    1. Aww, I am so sorry to hear that you have suffering from discomfort yourself. I know it is far from fun to deal with something new and to be unsure where it will lead.
      It's natural to be afraid, though I find it helps to try and stay positives although I know how difficult that can be at times.
      What I can tell you is that we are far stronger than we think we are and as a result, able to cope with far more than we thought we could. My disability has been a huge learning curve for me, but as a whole I think it has made me a better person and certainly far more understanding.
      I am so pleased you liked my post and I hope your stiffness goes away with time or that a treatment is found that helps to ease the discomfort. Thank you so much for stopping by and FYI I think you are wonderful too. :) Have a great day.