Sick Boy’s Thought’s from a Sick Bed

Sick Boy Collage

Sick Boy Collage

Well it’s been a crap week. Last Thursday night I went to bed with a pain in my left hip. By the morning an injury I incurred in 2012, during the rehearsals for the Paralympic Games, had flared up. In fact it later transpired it was infected and by the evening my wife had to battle to get an locum GP sent out. The infection was spreading at a dramatic rate and we were both scared. When the GP arrived, he said we were right to panic and if we had left it until the morning, as we had been advised by the 111 operator, things might have been very serious. Oh dear. So I have spent the last week stuck in bed, pumped full of strong antibiotics, unable to do anything much. Luckily I write as part of my job and you can do that from a sick bed, so we aren’t heading towards poverty just yet. What has amazed me during this whole process of fighting to get my injury treated is how differently I am treated due to my being disabled.

It started with no one believing I could actually feel how much the injury hurts. I have no idea why I would lie, but doctor after doctor found it hard to believe that someone who uses a wheelchair can feel anything below their waist. The incredulity I faced about having sensation in my lower body is nothing compared to the reaction I got when I said I worked. This seemed to be unthinkable, even to my GP who should know my personal situation. I have had to start explaining the hourly, weekly and daily rates I charge to make my medical team understand that my job is not a hobby and that they do really need to to get me back to being able to work full time as quickly as possible. Crazy isn’t it that at a time when the government is pushing the idea of disabled people working more, those of us who do are treated by employable by society?

Another big issue is that I have to keep letting people down. I have had to cancel job after job, booking after booking and so many appointments I have lost count. Sure it’s all costing me money, but it is damaging my reputation too. I try my hardest to be a reliable professional whose word is his bond. If I say I’ll do something, I do it. I just can’t live up to that right now. Not only will my health deteriorate if I try, but if I did venture out of the house I doubt I’d make it through to my car, let alone through a day of work. It really is that painful. So if any of the people I have let down, and those who I may still have to let down read this… I am really sorry.

This is something that my doctors just don’t understand. It’s not only the money, my reputation is vital as I work in a cut throat industry. If I don’t do something someone else will. Once a chance has passed, it gone for good. It’s not like having a real job, with it’s sick leave and sick pay. As a freelancer, every job is vital, your reputation is king and there will always be another person who can do your job. Yet all I hear is just rest, stay in bed. As I have no real idea of the time it is going to take to get better, I have no idea if I should take bookings or not.

OK, this is all very woe is me, and having just read it back it is VERY woe is me but I just wanted to put it out there. Not sure what it is, or why I wanted to write this, but then I have been cooped up inside for over a week. A week when the weather finally broke, the sun shone and I had a full diary. All I do know is that to anyone I have let down, or who I will let down as I get better please accept my apologies. If I can I will be there, if not I owe you one. If you are a doctor, nurse or other medical professional please remember that disabled people are all different. Some can feel, some can’t, and some work, some don’t but whatever their personal truth is they need to be treated in exactly the same way they would be if they were not disabled.

OK, that’s enough misery. Normal service will be resumed soon. Bloody better be soon or I will pop with frustration and boredom. ARGH!

On a positive note, I’ve lost loads of weight! Always a silver lining for an ageing Goth!

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Thoughts on a birthday 2

Three days before my 46th birthday I found myself over come with a strange sensation. A kind of down feeling, combined with a yearning to know where I was going with my life. As the big day approached, the feeling got stronger and as I awoke on August 18th I really thought “Oh wow, here comes my mid-life crisis!”. I must admit I do hope it is that, as if nothing else it means, thanks to the elegance of maths, that I will live to be 92. As I got used to being another year older, and entering the tale end of my 40’s, the feeling lessened but it is still there. Insecurity about how to proceed with my life. Not anything massive of course. I am very lucky that I have wonderful wife, who I love dearly, and am returning to full health after a really crappy 10 years where I seemed to fall to bits. More a need to examine what path to take from here.

I think it may be the fact that I am feeling healthy again is at the core of all this. After spending so long fighting to recover from my car accident in 1999, and then a further injury at work shortly after as well as the massive surgery I had to have to fix the damage that the car crash caused, I have forgotten what “healthy” feels like. There is a strange unwillingness to believe that I won’t suddenly fall apart again, even though I know this is really unlikely. I know that I had a similar period when I went into my chair back in 1981. Once you’ve had something so major happen to you, you stop trusting your body and it’s ability to take what is thrown at it. Now I have two broken spines, all the surgery and the change in the way the old body works, it is even harder to trust it to stay together. I keep hearing the words of Scotty from Star Trek, “She can’t take much more Captain”. But I must remember that I am the Captain of my body.

My wife always laughs at my relationship with my body. I am not so much a part of it, but more a separate entity that is forced to live within it. More than that, it is not a friendly place. In fact it is more at constant battle with me. I have to order it to do what I want, and it does not always follow those orders. And it fights back, the little bugger. I imagine that anyone able bodied (or non-disabled as I am told is the correct terminolgoy) could never understand what I mean. The best description I can come up with is it’s a bit like driving a crappy car. Years ago I had a Mini Metro that was such a boat. The automatic gear box had a mind of it’s own, the brakes were useless and one time the steering wheel fell off, another the front wheel. Yes the front wheel. Yet I managed to get that car to deliver me to my destination for three years before it was sent to the scrap heap. That’s what it feels like sometimes to be me. The funny thing is I can’t begin to imagine what it must feel like not to live this way.

So maybe it isn’t this that is causing my mid-life moment. The real driving force behind it is the fact that as I am now healthy I want to get back into my field of work. Before I got ill my media career was in full swing. I was returning from a very successful meeting about a new show when I had my accident. Sadly breaking my back for a second time made me too ill to work, and so nothing happened. The problem is that now I am ready to go back the media is not ready for me. I have been told I might be a bit old (followed by don’t quote me on that) and that my old punky image is working against me, hence the new natural look (see new picture left). Another big reason is that there are so many more new young disabled people wanting to work in the media. New talent is the life blood of the media world, and I am no longer that. That’s cool, and I really want there to be more new disabled faces on our TVs and voice coming out of our radios, I just wish I could still be one of those faces… new or not. If my time has come where should I go now? I don’t really want to give up on a career I enjoyed and was good at, but if I continue will I just end up a bitter old has been? More of a bitter old has been?!

I have tried to find real employment, but being an ex-TV presenter works against me there too. Over 20 years as a freelance broadcaster and journalist gives you many skills, but little proof of them. Also the modern view of a presenter is it is an easy job. When I started you had to write scripts or ad lib as you went, and third takes where pretty much out so you had to get it right. You also had to be fantastic with people. Interviews went so much easier if you could put the interviewee at ease and help them through the process while remembering what your producer wanted to get in the can. As well as the obvious skills, I learned to write scripts and reports, research people and stories, manage finances… the list goes on. Yet time and time again, I find that I am told I am not experienced or qualified enough for the position I am applying for.

The funny thing is that when I started writing this blog it seemed really important that I did, but now I have got this far I see that is rubbish. It doesn’t matter where I go from here. By just asking the question I am starting out a new. I don’t know what the future holds for me, but the again who does? I know more than most that the Pet Shop Boys lyric, “Just when you least expect it, just what you least expect” is one the truest things ever written. I am happy, healthy and the captain of my own, if crappy body, and I will decide what tomorrow holds. So watch out world, Mik Scarlet is back.

Who needs therapy when you have the internet eh? That saved me some money… think I’ll go shopping. That always cheers me up!

(Having read this back, I am shocked at what a like of self indulgent navel gazing this blog is. But hey this is the internet. One of it’s major roles is to allow the world to waffle on about stuff as if it really maters.)

PS – for fun try to count the number of film, TV and music quotes in this blog.

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The Last Taboo? Pain – Why does it hurt us to admit to it?

Chronic pain has been part of my life for thirty years. I have always had periods of pain ever since I was born, but after my spinal collapse at 15 pain has been a constant companion. In fact I grew to treat it like a separate entity, that accompanies me where ever I go, one that has moods and throws strops if I ignore it or forget to treat it with respect. Having said that, I do not let this awkward unseen friend effect my life and what I do.

Through out my life I have met other people who experience chronic pain, and have found that they have tried to find their own ways of living with it. The one common thread that ran through all the discussions was they wanted to keep the pain they were in a secret. No matter how much the chronic pain haunted their lives, everyone I spoke to asked me not to tell anyone.

A few years ago I worked with someone, who I shall called X. One day they noticed me wincing behind some filling cabinets, and seeing signs they knew well invited me for a coffee. We sat and chatted about our secret relationship with pain. They admitted that no one in our office knew, and they wanted to keep it that way. To be able to go to work they self medicated with a mixture of morphine, a legal prescription drug, and Amphetamine, an illegal stimulant. At the weekend they took a legal cannabis derivative and fell into a pain free trippy sleep. They were sure that if our bosses found out about how they coped with their pain it would be the end of their career. Years later I met another fellow of the pain, I shall call them F, and they coped with it in a very different way. They swore by alternative methods, and found that some worked to great effect. They also asked me to keep their secret.

In the past I have always tried to keep it quiet, and have even over compensated for something that no one else knew about. During my years working with on the BBC’s From The Edge program I tended to be considered their “action cripple” and was asked to do the items that involved doing crazy things. I always said “Yes”, even though I knew they would cause my pain to flare up to almost unbearable levels. I could easily have turned the job down, but felt by doing I would be letting pain control my life. I never told a soul.

As I get older I no longer feel the need to hide anything. As I tend to admit that I have issues with pain I keep finding that so many people I know have similar problems. They nearly all want it kept a secret. What is at the root of the desire to hide how much pain we are in? Part of it is not wanting to conform to the stereotype that disabled people are sickly and weak, but this is a secret kept from everyone, even other disabled people. Another factor is that look of sympathy that we get if we do admit to it. Recently I saw an old colleague from the DPU and we had a chat about the old days. When I told them about the amount of shoots I went on while in agony, I saw that look. I also wonder if we are ashamed of the pride we feel by fighting our pain. I mean the world around us seems to buckle under a head ache yet we battle through in agony. See, we’re tough. I know how great it makes me feel mentally when I do something that my pain should prevent me from even thinking about. So maybe I still an action cripple, just an ageing one.

Last weekend I met a gang of wheelchair using action junkies and one by one they all admitted that they had issues with pain. These discussions led to them all admitting that doing adrenaline fuelled stuff was their version of self medicating. One of the great parts of meeting these guys was being able to talk about pain openly. Pain and embarrassing hospital stories, but that is another blog.

Whatever the reason, chronic pain seems to be one of the last taboos of disability. Until those of us who live with it feel we can come clean, we can never really be ourselves and if we do come out with the chant of “in pain and proud” then I think we’ll find that we aren’t as alone as we imagine.

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Anatomy of Agony

I have finally come out the other end of a period of chronic pain. Spending three weeks coping with a level of pain that meant sleep was impossible, driving would have been very inadvisable and even dressing became too difficult to consider has dramatic effects on both your physical and mental well being. Everyone who suffers from chronic pain has the same experience of this debilitating problem.

Now I have a usual level of pain, caused by a spinal injury, a dislocated right hip, trapped nerves and aging shoulders (one of the joys of using a wheelchair, your shoulders do much more work than they were meant to and so age more quickly). I am used to dealing with this, and have found ways of doing so. Yes, it can be annoying and can mean that I find myself less focused or easily annoyed on a day when the pain is a little more than usual. However, every now and then events conspire to create a massive spike in my pain levels, and then things really do go off the rails.

This time I fractured my ankle, tore a muscle in my back and thus caused a set of trapped nerves to become inflamed. This led to my sensation below my waist to become “hyper-sensitive”. Hyper-sensitivity is where all normal feelings and sensations are increased to an almost unbearable level. When it happens I find wearing socks and trousers an agony, so you can imagine what might happen when it combines with a fractured ankle. Stupidly I did all this when trying to find out if I might be able to go back into club DJ-ing. Proof that however much this government might be trying to get disabled people back to work, until the built environment is fully inclusive this ambition is going to be one hell of a struggle. Whatever this event meant politically, personally it was a period of hell.

It started as a niggle in my right ankle and within two hours had grown to a level of pain that had me screaming the house down. My poor neighbours, they must have thought someone was murdering me. It felt they were to me. Pain is strange. When it takes hold it almost has a physical presence. I know when I had broken my back for the second time in 1999, as my spine collapsed the pain took on a physical element. As the nerves to my toes where being crushed I was kept awake by what felt like rats gnawing at my feet. Of course I didn’t have rodents eating me, but what was happening was the brain read the different nerve impulses and tried to make sense of them. But not only do situations like this happen, but pain itself feels like a entity has taken hold of your body. Especially terrifying as I could not feel my feet at this time. I know have full feeling below my waist, but at times of extreme pain this is not a boon. Oh no.

I will admit I have a strange relationship with my body. It has been the cause of many problems in my life, and so I do tend to feel that “I” live in my body and we are at constant battle. It’s how I have overcome many illnesses and debilitating physical problems. I battle them and my body equally. It never wins. When this hyper-pain strikes it isn’t my body that is fighting me yet again, it feels like something else. Like an dark entity takes over and it is trying to break me using pain as a weapon.

All this might sound like it is taking on a spiritual element but it is more that the way the brain struggles to cope with situations like this are what has led to our need to find supernatural reasons and causes. I know there isn’t an evil spirit taking over my body, and that it is a purely physical function of pain, it does feel like you are battling something “other”. I am sure that this is something that evolved to enable us to fight back, by battling against this entity instead of our own bodies. And it is a battle. Many times in the last weeks I have found myself unable to continue. Yet continue I must, and did. I also won. I always have. I always will.

During the moments where I feel the battle is too much to continue, I have an insight into those people who want euthanasia. Yet I know in my heart I will prevail, and so it saddens me. During the huge internal battle against this pain monster, I regularly am struck with tragedy of those who want to die, and especially those who do. I know how easy it would be to bow out, and what a relief it would be too. But there is no way I will go without a fight. Once the battle is over I know I was right.

I don’t know why I felt I should write this blog. I just wanted to put out into the ether my thoughts on pain and how it effects you. Everyone I have spoken to who suffers from chronic pain has a similar experience of it. Those who have continuous chronic pain seem to cope better on a day to day basis, thanks to finding mechanisms of treating the pain via various ways, but they do find that the pain gets to them eventually, whether it is physically or mentally. I know I am lucky. I have these periods ever six months to a year, and while they are terrifying while they last, once they are over I can go back to my usual pain and my usual life. Yes even my usual pain does effect the way I live, but it doesn’t stop me dead.

All of us that has pain as part of their disability knows how little that is considered by the greater public. No one looks at someone like me and even thinks of pain. In fact feeling isn’t normally something people associate with paraplegia! Many conditions that are hidden disabilities have pain within them. One day I hope that the public, and especially the government, understand how pain effects ones life and might even start to find ways of helping us fight the spectre of pain.

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