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

Express yourself

It Monday and for me that means it's time for the, Express yourself meme, check out others post here.

This weeks question: Is there anything  you'd like to change, or work on, about yourself, this year?

I've actually been thinking about changes a lot lately because, well to be honest, there are a lot of changes I need to make. 

The first of these is health related. When I had my son 7 years ago, it was decided that an epidural was needed, due to a very long labour that had left me exhausted. The epidural seemed to go well at first and was certainly a relief as it enabled me to get a little rest before the pushing began; however, a few days after the epidural I started to get sharp shooting pains, in my back at the site where the needle was injected. Over the years this pain worsened and I also started to get chronic back pain from just standing and walking. My mobility is now limited to walking very short distance, one room to another and I have to have chairs placed around the house to give me places where I can stop for a break when needed. 

I always had issues with weight even before the epidural. So much so, that as a teenager, bulimia left me so weak I ended up with double pneumonia and nearly died. Food was my constant enemy. An abusive childhood saw me, when possible, turning to food for comfort, then putting on weight and feeling ashamed and disgusted with myself. The result of which was my need to purge, which was achieved by forcing myself to be sick. 

My weight has been up and down for years but after having my son, it went up and up, until I reached a massive 38 stone,(532 pounds for my American friends) naturally my disability added to this. Having limited mobility and feeling sorry for myself because of that fact. I grew wider and wider. 

Then I decided to do something about it and lost 8 stone (112 pounds) relatively quickly. Taking me down to 30 stone (420 pounds). Then a difficult period in my life, saw me full back into bad habits again and the diet went out the window. 

I did get back to dieting again and managed to get down to 28 stone 2 pounds (394 pounds) and then fell off my diet again recently for several months due to some difficult times before Christmas.

By some miracle dispite no holds barred, binging, over that period, I have only gained 3 pounds and am now 28 stone 5 pounds (397 pounds.) but I am determined to get the weight down for good in the hopes that it will help ease the pressure on my poor back. So the bigest change I want to make this year is to lose the weight. I know I can do it, the right way now, the first eight stone I lost shows that. I also know it is going to be hard and that it won't happen over night. I certainly didn't get this big overnight to begin with. 

You know this is the first time I have ever openly come out and admitted my weight in this way! It's very scary but being honest about it is the first step in shedding it. 

Now according to the body mass index, for my height of 5ft8, I should weigh between  9 and 11 stone (126lbs to 154lbs.) That means I have to loss between 17 to 19 stone (238 to 266 pounds) yikes! I definitely have a fairly large battle ahead.

As I write this I wonder how many of you who read this will cringe with disgust. I don't blame you if you do. What I have done to my body is disgusting and that brings me to a question I have been being asked a lot lately. Why don't I just go to the NHS and get weight loss surgery? I want to cover this here, so it doesn't come up in the comments. 

I've thought about that option, of course I have. After all it does seem like an easier option; however, the NHS is funded by tax payers money. When people pay those taxes, I am sure the last thing they hope it will go towards, is an operation for a fat person and I don't blame them for that. No doubt their first thought is their own family. Secondly they might consider poorly children, cancer patience, or others who are sick through no fault of their own. 

The way I see it, my weight is my fault. Thus I am responsible for shedding it. That's not to say I think people who have the operation on the NHS are bad, I don't. In fact my sister in law had it last year and has lost massive amounts of weight because of it, as well as a lot of hard work on her part and it does take work, even when you have the op, because you do still need to eat healthily and exercise. 

But for me personally it is not a route I feel happy to take. I did this to myself and I need to undo it myself. On top of that, with my lack of mobility, I dred to think how much loose skin would be left behind, if I lost the weight as fast as you can, after the op. 

Loose skin is hardly anymore attractive than the fat. I hope to minimise that, if not irradiate it completely, by doing this the natural way. With healthy eating and whatever exercise I can manage. 

So that's change one, fight the flab.

                       

Change 2: be more productive. 

As a writer working from home it is so easy to get distracted by TV, books, movies, social networking sites and games and I do get distracted easily. I want to get into the routine of writing every weekday morning for at least an hour if not longer. 

My dream is to be a well know author and I won't achieve that if I don't get to work and stop procrastinating. 

                                 

Change 3: cut back on the smoking. 

Yet another bad habit that needs kicking. Trying to do that while dieting is never going to work but if I can cut back, then hopefully once I have lost the weight, kicking the cigs will be all the more easy. 

I'm doing this with the help of e cigs. Without nicotine in them and it's going okay so far. No promises on that one though what with the dieting lol.

Change 4: get past my anxieties and get out. 

I am so afraid to use my wheelchair in public that I stay in the car when ever I go out with my family, reading my book, while they go in the shop. 

It is horrible sitting there wishing I was with them but being to afraid to change it. 

People are cruel when you are fat, even more so when you are fat and disabled. The looks you get from complete strangers, because you are big and in a wheelchair crushes your self worth. 

It's destroyed mine. 

But I need to stop worrying what others think, because it is stopping me and my family from enjoying life, in the ways a normal family might. 

I'm not anywhere close to being confident enough to use the wheelchair in public, but last night I took a step towards being a little more mobile when I can't take my mobility scooter, and purchased some crutches. 

The hope is, that by using them when them I can take some pressure off my back. They will also give me something to lean on, when the pain gets to much and my legs start to turn to jelly.

Fingers crossed they help, if only a little.

So that's some of the changes I want to make this year. What about you? 

Love and hugs Joss xx

( ps. Being honest about my weight here was incredibly hard. So please try to be gentle with your words, should you wish to leave a comment. Thank you.) 

                      

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. 

Follow fest

Today, I am taking part in the Follow Fest. Hosted by Melissa Maygrove, it's a chance for us lovely bloggers, who love to write, to meet and get to know each other a little better. The idea is quite simple. Jump blog to blog via a linky link that you can see if you go here and read each author's post, then connect up to them by as many forms as you want; be it facebook, twitter, or whatever. 

So, let me tell you about me :) 

Name: Jossie Marie Solheim

Fiction or non-fiction?  Fiction, always fiction; my imagination couldn't cope with me putting it aside, in order to do a non-fiction novel, lol. 

What genres do you write?  I'm a bit of a mixed bag. My published novel, Insane Reno, is a thriller / mystery, but I am currently working on a prequel to that, as well as a fantasy/scifi, and another book that could be classed as Christian fiction. Really, when it comes to my writing, anything goes, and it's really just a case of what is inspiring me at the time. 

Are you published? Yes, my first book Insane Reno is published and available in both Kindle and paperback from Amazon. I was published by the lovely Dave at Raven Crest books. There are some amazing authors at Raven Crest, take a look here. I also have a story in the overcoming adversity anthology; an amazing book that was created to raise money for an amazing guy. Please check it out. 

Do you do anything in addition to writing?  I like playing around with photo art and because of this, I actually did my own cover for Insane Reno. I am also a mum and wife, which are, of course, full-time jobs, lol. 

Where can people connect with you?

 

Facebook personal page: By far the best way to connect with me and keep up to date with my day to day life. 
Facebook author page: specifically for information about my books. 

Goodreads: I'm an avid reader and use Goodreads to record all my latest reads; so, if you want to see what I am reading, then be sure to check it out.  

Amazon: Check out my books and reviews on Amazon and maybe buy a copy of Insane Reno if it tickles your fancy. 

Blogger: My lovely blog, There is always something going on here, at my blog, so why not follow me and get chatting here, too. 

Twitter: I have a twitter account but I must confess, I don't really use it. I know I should, but twitter just goes over my head. You can follow, if you like, and who knows, maybe one day I will get the hang of it. No promises, though. 

email: jossie.marie@gmail.com. Email is a great way to get hold of me quickly, as my messages go right to my phone and get checked regularly; so, feel free to contact me in this way, also. 

Is there anything else you’d like us to know?

 

Writing is my life. I started writing as a child, when I was dealing with abuse, and it became a form of escape from my pain. Through words, I could write myself all kinds of happy endings and it just grew and grew until it was all I wanted to do. 
 

There were a few speed bumps along the way; my biggest coming in the form of my Dyslexia, but I was determined and have worked really hard to overcome this, still am, in fact. I have a wonderful editor, who clears up any mistakes and through working with him, I am constantly improving in the areas that my Dyslexia still effects; primarily my Grammar, now. 

In the last Ten years, since meeting and marrying my husband, my life has slowly changed for the better. We started out living with my mother in a small flat, then moved to a beautiful farm conversion that we were renting, before being hit by a difficult period, where money was very tight; the result of which was that we ended up in a field with a very basic camp site in a tiny, leaky caravan for several years. Now; however, we own our own home, which we are slowly renovating and have more security than either of us have ever known, as well as our beautiful son, Kye, who turns seven this Friday. 

 We live in Cornwall, in a beautiful little village, with our three dogs, two cats, guinea pig, and two goldfish. My husband Dan is 32 years old and I am 29. Dan works for a local window fitting firm and you already know what I do. Our dream is to one day have our own small holding and for Dan to be able to retire from work early. Throughout our marriage, he has worked like crazy to keep us afloat, determined as he was to ensure that the  only work I should do was following my dreams to become a writer, at least till our beautiful son arrived, at which point I had the even more important task of caring for him. We are a small, but very happy little family of three; more, if you count our pets, and we've learned to take each day as it comes.

I recently became a Christian, but Dan sees himself as more eclectic, when it comes to faith; choosing to agree with and accept whatever he feels makes sense, regardless of the religion, and I respect him for that. 

The only other area of my life you should probably know about is my disability. I have very limited mobility after an epidural, when I had my son, left my back badly damaged. I now use a wheelchair, when in the kitchen, and a mobility scooter or wheelchair, when out of the home, as I can only walk very short distances, sometimes no further than our bathroom, and can stand for only a short while, also. If I try to stand or walk for too long, I get agonising lower back pain and my legs turn to jelly. It's not fun, but I have learned to cope with it and adapt. 

My son also has a less than pleasant health related condition, in the form of Asthma. He is my inspiration for staying strong, because, even at his most poorly, he always has a smile on his face. He is such a brave little boy and has a way of making everyone fall in love with him. When in hospital, he wraps the nurses round his little finger in an instant and loves to follow them around the ward, helping them with their work. He is truly amazing. 

So, this is me, my life, my family. I'd really love to get to know you, so please add me on facebook, follow my blog, email me, whatever you fancy, and lets get to know each other. 

Love and hugs, 
Joss xx