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.

EPIDURAL!

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?

No.

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

Yes.

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

Undetermined.

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

Undetermined.

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

How things change

A few years ago now, when my son started play-school, I had to come to terms with something that I had been trying to avoid with increasing difficulty for years, my disability.

On Friday, it will officially be seven years, since my son's birth. Seven years of my back's slow deterioration and it was slow.

It began the day after my 53 hours of labour and epidural had ended and it started with a strange twinge in my lower back at the site where the needle had been inserted.

I didn't think much of it at the time. It wasn't excessively painful. I was a new mum; I was happy. What was a little twinge? It was natural, surely. You'd expect some symptoms, after having a needle stuck in your back, at least for a while at any rate. It was not a big issue, at least to my mind at that point; however, the pain didn't go away. In fact, it kept happening. If I jolted my back, it happened. Sometimes, when in the car, it would happen; still, I didn't think anything of it.

In fact, I went on to ignore the pain in my back for years, despite the fact that it was getting worse and worse and happening far more frequently.

I have a phobia of doctors, hospital, needles. I am not a brave person and the thought of seeing someone about my back scared me witless; so, I did something that I have since learned is very common, I ignored it and hoped that it would go away.

Sadly, it didn't. It just got steadily worse, until the time my son was ready to start play-school, by which point I was really struggling to walk any great distance or even stand for very long.

Suddenly, needing to get my son to the school bus, I was faced with the biggest challenge of my life. Everyday was an agonising half-hour struggle to walk what would have taken a normal, able-bodied person five minutes. Every step was torture and by the time I made it back home, I would be in tears from the pain.

Yet still, I didn't want to face facts. Instead of dealing with the issues, I told myself that my son didn't need to go to pre-school or that even if I could just get him up to the bus once a week, that was enough; but the time for my son to start school was creeping ever closer.

"You need to see the doctor," my husband said to me, again and again, as I was left in agony for days, after what was a very short walk, "You can't do this everyday and I can't take him to school."

And he was right, he couldn't. He left far too early in the morning to take our son to school and returned too late to collect him.

There comes a point in life that as badly as you want to ignore something, you have to face it and mine had come; so, we headed for the doctors, explained what was wrong, how long it had been going on, and when it had started. He didn't have a solution for fixing my back, but he was confident that I needed to apply for disability.

My back was not getting better any time soon, if ever, and if I continued to put strain on it, I could lose my ability to walk, altogether.

"You need to use a wheelchair or a mobility scooter outside of the home. The disability people will help you to get one."

I was distraught. Me, never walk again? I hadn't even considered that a possibility, stupidly. Me, use a mobility scooter? That was for old people, not me. Even the thought of a wheelchair was more than I could bear, despite the fact that they are more common, among every age group.

Biting back my pride, at my husband's insistence, and for the sake of my son, we got the forms for the Disability Living Allowance and filled them in.

I don't know what my doctor told them, when they contacted him, but before I knew it, I was on the higher rate of mobility, medium rate of care, and we were starting the process to get my first mobility scooter.

I was awful to live with at that time; one minute in tears, the next mad, the very next second, afraid. This wasn't me, this wasn't my life, and accepting this scooter felt like accepting there was no hope.

Depression quickly sunk in. I scoured the internet, looking at mobility scooters, deeming them all too fuddy-duddy. My husband thankfully kept the pressure on until, at last, I settled on a Pride Colt Xl8, little knowing that this scooter would become my most prized possession; that he would be so important to me that the day he was taken from me, I would cry my eyes out, but that is exactly what happened.

That scooter gave me my freedom back; my life back. It allowed me to be a proper mum again, to be able to take my kid to school, to the park, to leave my home; something I had avoided for years, unless my husband and the car were going with me.

Suddenly, I was independent again and it felt amazing.

I christened my little scooter, Speedy McNipster.

All my fear of judgement from others, all my fears of looking stupid were quickly erased. People didn't stare, for the most part, nor judge. In fact, the children at the bus stop and the parents took to my scooter so much that the first Christmas I had it, the kids decorated Speedy with tinsel, stars, and little snowflake stickers.

 apologies for the messy garage, it's my husbands domain,

I just get a small spot for my scooter. 

I drove around with my scooter looking like this for weeks. The kids were over the moon to see that I had left it all on. 

Sadly, a few months ago, a mistake meant that my Disability Living Allowance was taken away. Forms were meant to be sent to me, in order to renew early, due to the new PIP thing, but I never received them. 

The result, my disability benefit was suddenly cancelled. I didn't even know, until nearly a month after, when my bank account was suddenly empty. 

What has followed since then has been hell. My freedom that Speedy had brought me was suddenly threatened. Motorbility had to take speedy back, because, until I got a new claim in, using the new Personal Independent Payment method, I was not entitled. 

We rushed a claim in, calling that day, filling out the paperwork and sending it off, the instant it arrived, desperate to save Speedy. 

Then we waited and waited, until Motorbility informed us that they would be taking Speedy on the 19th of September, unless I could find £650 pounds in less than a week. 

It seemed impossible and it was. We tried everything, but with money now very tight (after losing my disability money) we were barely managing to pay our bills. There was no hope of finding an extra £650, not that fast, at any rate. 

Friends and some family jumped in desperately, trying to help, but we couldn't bring ourselves to borrow money from friends with no idea when we would be able to pay it back. 

So, on the 19th, I waved goodbye to my dear friend; my heart, breaking. 

Then a glimmer of hope. Mobility weren't collecting it from the mobility store that we had gotten it from for another week. My husband's Vespa was put up for sale. If we could just sell it within the week, maybe there was still hope. 

We did sell it. We sold it the very next day. We then just had to wait to find out how much Speedy was now going to cost, because, "There is a new company taking them now for Motorbility and they may have different prices. It could be more or less, but we'll find out for you," the lovely people from Launceston Mobility told us.

So, we waited and waited, praying that it would not be too much more; that it would at least be under a grand. 

The weekend passed with no news. We had been told, Monday, so we were still hopeful; however, Monday then passed and still no news. I was getting nervous. 

Tuesday came; still no news. We were nervous. We had a temporary arrangement with the school, in which Dan was allowed to take Kye in to school at 7:30am and afternoons the bus driver would stop at the top of our road, walk Kye across the road, and send him straight down and home. 

Everyone was going out of their way to help us. We needed a solution and soon. 

Well, later today, I got that answer. 

The phone rung. It was bad news. Speedy McNipster was gone. The company that collected him had turned up and taken him, despite promising to get back to Launceston Mobility about a price. 

When the wonderful staff at Launceston Mobility gave them a call, they were told that Speedy had already been sold. 

When they called to tell me, my heart broke all over again; however, that is not the end of the story. 

Launceston Mobility, who all the way though this have been incredibly supportive and kind, had a solution, a very generous one. They would give me a brand new scooter, at a massively reduced price, that was the same as speedy, but a little upgraded with new, snazzy, LCD screen and touch buttons. 

Not only that, but they would deliver it tomorrow night, before even receiving any form of payment. 

I would be surprised if they are making any money on this mobility scooter at all, as we cannot even find a second hand one for the price they are allowing me to have it for. 

These people have gone above and beyond for me and I am so grateful. Thanks to them and my amazing husband, who sold his beloved Vespa, I now have my freedom back and no one can take it away from me again. 

This song explains how I am feeling right now, so well. 

If I'd have known, all those years ago, just how important that scooter would become to me and just how much it would change my life I never would have fought it so hard. 

So please, if you have a disability that you are avoiding, stop it. Go see your doctor. You never know, he might just give you your life back. 

Love and hugs all,

Joss xxx

If you live in Cornwall or Devon and you need disability equipment, please consider Launceston Mobility, they are an amazing group of people and they will not let you down. I am proof of that. 

When being disabled gets hard.

This Friday, my little boy will be turning seven. For most parents their children's birthdays are a joy; for me the joy is tinged with guilt.

You see, every year, when my son's birthday comes around, I spend my time searching the internet for fun days out that are accessible to those with disabilities.

Cycle track on east bank of Upper Tamar Lake for SS2812

This photo is 

© Copyright David Smith and licensed for reuse under this Creative Commons Licence

The most common activities available seem to be walks around lakes and other such places that are wheelchair accessible. These walks are pleasant enough, but not as exciting for a child as going to say, an amusement park. 

Here is where the problems start. You see, most amusement parks say that they are accessible for wheelchairs; awesome, but not everyone is comfortable in a wheelchair and very few parks say if they allow mobility scooters. So, you ring up, discover they either do or don't, and adapt accordingly  (in my case, panic a little, when they say no to the mobility scooters), then freak out about having to use your wheelchair until the moment it's all over and you're safely back home after the event.

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Uploaded by brianac37 on July 21, 2012                                                         Taken in Llandudno, Wales                                                              Some rights reserved.

It is not; however, as simple as just finding a place with disabled access. What most don't realise, until they are faced with visiting these places in a wheelchair or on a mobility scooter, is that disabled access does not always guarantee you access to the whole park. Often, when you get to these parks, you find that although some areas are indeed accessible to the disabled, many areas are not. 

The result, the person with the disability is left sitting alone, waiting for their family to return from the areas they cannot get to, which is difficult for all involved. 

Hot chocolate, Costa Coffee                                                  Uploaded by EEPaul on June 2, 2013                                              Some rights reserved.

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Picture the scene, the person with the disability does their best to reassure their family that they will be fine, sitting in the cafe or restaurant, alone, so as not to spoil all their fun; after all, why should they all suffer for your disability. 

They naturally want to experience everything the park has to offer, but are also feeling guilty, because they must leave you behind in order to do so. The result, someone volunteers as minder; staying behind with you, while pretending they didn't fancy any of the rides in that particular part of the park anyway, when you both know it's a lie, that you're holding them back and spoiling their fun.

You are. of course, grateful that they stayed, but feel guilty, because they are missing out, because of you and your disability.

I don't blame the sites for this lack of access. Most try their best to make as many areas accessible as possible, but it isn't always easy to do. There are parks that figure you wouldn't want access to rides you couldn't possibly go on anyway, but they are wrong. You don't have to ride these rides to get joy from them. Just watching your family, laughing and having fun can really put a smile on your face.

Wheelchair Accessible

Uploaded by Lachlan Hardy on April 25, 2013

Some rights reserved.

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These problems are what really make my son's birthday hard for me, as ultimately my family try to plan around me and my needs instead of deciding what they want to do and where they want to go based on their own honest desires.

This is when I really hate being disabled. I don't want my son to decide what he wants to do based on my disability. I want him to make the choice based on his own desire. 

I am pretty good now at coping with my disability; even the constant pain is something I have adapted to, but spoiling my family's fun is something I don't think I will ever learn to cope with.

Thankfully, this year I think I've found a solution thanks to Trethorne Leisure Park.

Although they don't state on the website if mobility scooters are allowed, they do seem to have wheelchair access to most of the site.

Not being the bravest person in the world, I still find using my wheelchair in public places a struggle. I favour instead, my mobility scooter, which I feel far less exposed and vulnerable on. 

Another added bonus of my mobility scooter is that I don't have to ask for assistance, in the form of a pusher, as I frequently have to, when in my wheelchair, due to my serious lack of upper body strength.

So, my hope this year for my son's birthday outing are:

1) Mobility scooter access. 

2) Access to the majority of the park, so no one is forced to play minder and no one is left behind.

3) We don't get to many staring, pointing, or rude people, making disparaging comments. You'd be surprised how often people do this, as if a disabled person is an added attraction.

4) By far, the most important hope of all is that my son has an amazing day out with us all. A day that he'll remember fondly, forever.

My amazing little boy, when he was a little younger. 

And on that note I will bid you adieu, wish you all a lovely weekend; well, what is left of it, and ask just one small favour. Please treat others as you would wish to be treated, regardless of colour, creed, or disability. We're all just human, after all, and simply trying to make the best of what life throws at us. 

Love and hugs, Joss xx

If you would like to know more about Trethorne Leisure Park, check out the link here. 

If you are interested in learning more about Tamar lake (pictured in this blog) and it's disabled access click here.