Chronic Pain Destroys All It Touches

Chronic Pain Destroys All It Touches

 Chronic Pain is more than a pain in the arse!

(A personal angle on chronic pain – “A close friend suggested it would help educate and inform, I hope this is the case? Edgar Allan Poe said it better though.”)

with Kindest Regards

Jonathan W

I am watching a very long Breakfast TV News section on whether it was professional for the Police to show tattoos or not, whether they should be covered up or not, the argument being that tattoos did not demonstrated a professional image. WHAT IS THIS WORLD I LIVE IN!!!!!!!!!! Only yesterday the Police mistook a blind man of 60+ (who was left blind after two strokes) using his white stick to find his way down his own street, mistook him for a guy carrying a samurai sword and without warning they tasered him, and they worry tattoos may lower their professional image. For Heaven’s sake guys please join the real world! But I am delaying the subject to hand, but I just had to tell you about what I just heard on the News – so pathetic of them!

OK, where does one possibly start to describe what the mind and body goes through, the effects on self and family, the impact in simple functioning, simple Activities of Daily Living that are no longer simple. It feels so self-indulgent to go into the details of one’s condition and the effects it has but this is my only point of reference; yes I am a trained clinician and understand the physiological, psychological, emotional, social and employment effects of chronic pain, the impact on self and others from a clinical perspective, but this is in itself emotionless and disconnected from the reality for the individual, their family, from my reality with my condition. But again I caution, I use the term my condition but in real terms it is a condition that effects my family as much as it does me, my work colleagues and once upon a time my friends.

I have to say I don’t have many true friends now, I have probably 3 to speak of, I have deliberately distanced myself from all the others so that they don’t see what is happening to me, but I have work colleagues I genuinely value and would miss if they were not part of my working life, so in that respect they could be classified as friends. But look at me distracting you from the subject at hand, a slight of hand I use with many people that I would rather not let them see what is happening to me, smoke and mirrors springs to mind. So onward with this diatribe about pain, again I feel I am being so self-indulgent and beg your forgiveness for this.

In my case it was slow onset, as my degenerative condition of the spinal cord worsened and this gave time to put together a pain management regime, a cocktail of Opiates and other pain killers, mixed with muscle relaxants and anti-inflammatory, and this works, well it works some of the time. At best I have the sharpest of pins and needles in my legs, or aching in my spine that just doesn’t go away, never goes away, like constant background murmuring, background noise, it is always there regardless of what one does. The medication does help but in itself is not an answer, as to get a level where there is zero background noise means I would be less than conscious cognitively, so a balance ensues. Then there are times I lay on my bed, shamefully, embarrassingly crying as my lower back is on fire, and non existant knives stab and stab and stab again, deep and twisting stabs. I latterly feel I am burning, I have thoughts that I just cannot take it, I am a tough old fighter and I cry that I cannot take any more.

So the best we can achieve is a balance, one that is constantly changing and is concerned with how much background noise I can take and how much mental functionality do I want. Too far one side and I am in agony, pure and utter hell of pain, and unable to think or function or move. Too far the other way and I am too drugged up and unable to think or function, and yes movement becomes dangerous as transfers become unsteady in my drug induced stupor. As I said, a balance is a constantly changing thing, imagine when you last had a head ache or tooth ache, and try to recall how this affected your ability to concentrate or think or carry out any action clearly. Pain, even when well managed as mine is some of the time, still has the ability to act like quicksand, it sucks you into a place of moroseness, poor judgements, and irritability, at times all you want is to lie still and not be with anyone.

I remember only yesterday thinking people just don’t understand the all-consuming nature of constant discomfort and pain, it makes you into a negative, horrid person, self-obsessed and completely introverted, and before you know it you are using any excuse not to sit with your family, not to talk to them, not to go out with them and certainly not to celebrate with them. A part of you becomes bitter that it is you that is suffering, and in your head you are yelling, crying, screaming, “what the hell did I do to deserve this – why the hell is it me?”. One develops the art of covering this up so people don’t misinterpret it as you wishing this on anyone else, as this just isn’t the case. However, I found out one is not that good at covering it up, family know, family hurt too, feel helpless to support you, feel completely at a loss and hurt with you on an emotional level, they are in  pain too as they just can’t reach you when the quicksand encases you completely.

If there is one aspect I really hate about having a chronic condition, with chronic pain, is that it makes you so selfish, makes you believe that tomorrow wont be better, tomorrow will be just as bad so why bother. It makes you believe you just have the here and the now, that tomorrow equates to the same or worse, especially when one factors in it is a degenerative condition, it isn’t going to get better. It is a condition where the nerves coming off my spinal cord are crushed slowly over time, as my discs crumble and disintegrate.  I have to say there are times when I am genuinely sad that I have awoken from a rather uncomfortable sleep, I know that is so selfish but some days I just can’t face it, just want to fade out and feel no more, be no more.

My family learn to operate and live with me as a hanger on, they worry and they too try to hide it but I can see it, I understand it, I have become a burden upon them and I am not particularly nice to be around sometimes, I see the upset and the stress my angel is under and I pray that she will be ok, and I often wonder why she stays with me when the life I give her is one of struggle and strife, she didn’t sign up for this and I regret everyday she has to live with me in this state. I won’t so much better for her than I can offer, I want her to free of this weight on her shoulders, the negative world and future I offer her, she deserves so so much better. The pain warps my thinking and I see everything in black and white, there is no colour to life at times, there is no joy, life has lost its flavour, only the love of my family helps me keep going. This is the only light in the darkness; those moments of laughter as one of my daughters does something silly, more often than you think, can sustain one for such a long time. These are oases of positivity, as is being held and hugged, knowing I am loved breaks the darkness in my mind as the pain swirls, ebbs and flows through my body.

There are days when I just can’t play the game, drug me out of existence is all I want, days I think I am becoming insane. As I said the balance is so fragile, so difficult to achieve, I estimate I have maybe two or three good hours in a day, until I become pained, fatigued, tired and my senses are consumed as the background noise becomes too loud to bare, the base pounding in my body as the pain surges. It is at such times I remember that this is going to get worse not better, that my condition is one that traps me in a painful carcass of deterioration. So every day is a fight to use those few hours, to get the most out of 2 or 3 hours before all becomes too much.

Now with all the above in mind one would think that statutory services would be in support of my family and me, well they are not, the only person that supports us regularly is the GP. The majority of Statutory Health & Social Care professionals (our OT has been wonderful – always an exception to the rule) have actually done us more harm than good. Let’s just run through this briefly:

Psychiatric services (as we need psychological support) send me appointments and then tell me it was an error – have they no idea how much effort it takes to leave the house, or is it a reflection of how little they regard the ‘patient’;

My original Social Worker was so bad we ended up putting a complaint in, which was fully upheld; however the complaints manager and my replacement Social Worker to forget to turn up to the ‘Mediation & Resolution Meeting’ –  so the complaint remains unresolved over a year later;

My replacement Social Worker, whom I have never met, is on long term sick so I am unlikely to see her, and thus I wait for my case to be reallocated;

I am just starting physiotherapy so am hoping this will help with a problem wheelchair services are wholly responsible for – let me explain;

I needed a new wheelchair, am about 8 years into them now, and so I was assessed, my 11th assessment (yet another story but not for now – I can hear you sighing in relief), and it was agreed that the chair needed to be one that I could self-propel and it needed to support my trunk, as my trunk muscles are wasted (forgive the pun). So I get a chair after 8 months of waiting and pushing and it is not self-propel-able but I don’t have a choice – I WILL NOT BE PUSHED LIKE A BABY IN A PRAM!

So I know have accelerated inflammatory arthritis of every joint in my hands, wrists and shoulders, with a side dish of tendonitis in both hands and wrists. This condition is so bad that I literally have claw like hands now, with a healthy dose of tendon shortening and spasticity. Now I am in even more pain and unable to get comfortable at all. There was only one position I was able to sleep in due to my condition anyway (on my left side, with a pillow between my legs, knees slightly bent); now I have to try and sleep sitting up, for as long as by back allows and hoping my pressure areas don’t breakdown.

My mind numbed by the pain, no balance left at all either, now just pain, discomfort or drugged cognitive oblivion. I cry when the drugs ware off and I am tipped into hell until it is time for more drugs and the ensuing reduced consciousness, which is the best I hope for now, I don’t want to be in this world as it means pain and utter discomfort to me.

Yes the very services that are supposed to make me more independent have actually added to my pain to the point where my life is regulated by volumes of opiates, other major pain killers, diazepam, and the like. These health and social care services have actually made me MORE disabled, I can do so much less now thanks to their bloody intervention, they have made me worse!!!!! I see how upset my angel is and I am the cause, I never wanted to be this, I never wanted this life of living hell, interspersed with drugged numbness. I still have the occasional period where if I am still enough and do absolutely nothing from a body movement perspective, I can pretend all isn’t too bad. Then when I am alone my tears roll down my face, the pain is there waiting, lurking, waiting to devour me mind,  the pain is always close by and all I can hope for is that it might be bearable, that it won’t buckle my body and my mind, contorting both into an unrecognisable person with me trapped inside.

You want to understand chronic pain, it’s simple it is a living hell for me, my loved ones and there is no acceptable escape, just hell. And the really sting in the tail is that it’s going to get worse. I want to write about this anymore, it consumes too much of my time already, but I was asked to put across what it is like to live with chronic pain, and simply speaking you don’t live with it, it destroys you and those around you.

What do I want from this blog, I want people to start understanding, to start asking how they can help, especially those employed to help people like m and my family, you can’t understand what chronic pain is like from a book, I should know, but we can start talking about it, start acknowledging it, start supporting the families and the children that are affected as much as the individual, and perhaps, just perhaps, drugs will be developed to effectively deal with neurological pain without rendering someone near unconscious, there has to be a better balance somehow.