Chronically talking about pain series – an account of a day in the life of pain

The die is cast, for today at least.

But I am unaware, as I lie asleep in bed. A sleep that I only managed to fall into sometime around the hours of when the birds start singing in Spring.

Waking up is a lottery – or more like returning to a stressful, fast-paced job on a Monday morning after a two-week holiday. You don’t know what you are walking in to. You don’t know what to expect, or what you will be getting as a ‘welcome back’ gift.

The gift of chronic pain

The gift of chronic pain. An invisible illness. Where each day you are served up a buffet of problems, and you have to quickly work out how to manage the areas of your life it impacts. It’s like throwing random objects at a magician and expecting them to perform a trick. Magic doesn’t happen without preparation, but I’m expected to spin plates—every day.

Wake up in agony from back pain – you have to work out a way of getting the baby in the car and to the nursery.

Can’t bear weight this morning? Tough. You have a dog that expects his walk.

On your final warning from work but that migraine means you can’t even see? Oh well – tune in tomorrow for more fun and games and another mystery guest on ‘This is your shit life’.

The morning after the night before

Except, in this case, there are no funny stories, antics or dancing on tables. There is alcohol on occasion, however, but it’s medicinal. To knock me out when all else fails. The Hold Steady once sang: “They say you don’t have a problem until you start to do it alone” – I say the pain in my limbs is a much bigger problem.

I wake up to one of three things. My son stirring on the baby monitor. My wife getting ready for work. Or pain. I never wake up to my alarm. I don’t even know why I bother setting the damn thing.

I’ve been asleep for 90mins. Perhaps two hours. I stop keeping note of the time once it reaches 2am. By that point it doesn’t matter – I’m waking up feeling terrible, regardless.

Now you’d think that the same pain that kept you awake, would be the same problems that you wake up with, but oh no. Not in my case with arthritis and nerve pain, anyway. I can be up all night with neck pain and wake a few hours later with a swollen knee or having lost 70% of the feeling in my hand. It’s completely ludicrous, not to mention, impossible to manage or plan for.

There’s no rhyme or reason. If my chronic pain were music, it would be jazz. You could see the same band five nights in a row, and you still wouldn’t know what order things would be coming at you in. And I appreciate that my condition is variable, but it applies to pain, regardless. My experience of pain is different from your experience of pain – and in a way, it’s as impactful as the life you lead, which makes it especially difficult to treat and support the individual.

I support ‘Chronically talking about Pain’ this January. Talking about life in daily pain to raise awareness. Get involved with the hashtag #MyChronicPain (#JoelvsArthritis #ChronicPain)

I have no time to think. I have no time to pace, do what’s best for me in the long run or all those other things Pain Management therapy teaches you. I have a young family, a good job, a dog to walk, bills to pay and unless I wake up with a leg hanging off, the whole world expects you to find a way through it. Sometimes something has to give – a day off work, sending my boy to the nursery an extra day etc. but staying in bed is no longer an option – and it terrifies me as much as it motivates me.

I have no idea what damage I am doing long term. I guess we won’t know until further down this pot-holed dusty track. All I know is that the world owes me nothing and no one is coming to save me on those mornings. No-one is telling me to look after myself. No one is suggesting I rest.

I can feel sorry for myself all I like internally, but it’s not changing this morning—this morning when my spine feels like it’s being rung out like a wet towel. Like there are a pair of giant hands, pushing and pulling my vertebrae back and forth like a Slinky toy. I whimper getting Dylan dressed for nursery. I descend the stairs on my backside, too frightened to rely on my own strength on days like this in case I drop him. He thinks it’s funny. He’s seen it 100 times. Nobody else has, however, and that, in a way, is part of the problem.

Living with the pain

At this point in the day, when Dylan’s in the nursery, the dog is walked, or more like, has walked me, and decisions have been made regarding whether I’m working, how much I can do, how much can I handle on top of the pain etc. you’d think you would relax. In some ways, you do but only in the sense of managing the pain.

By 10am, I’m in a groove. It’s a relentless, nightmarish groove, but normally by this time of the day, I have loosened up as much as I am going to and know what I am dealing with. There’s some comfort in that – like being beaten up in a pub car park but seeing the assailants walk away to the street. You hurt like hell, that won’t change, but at least it won’t get any worse.

I’m on the ropes most days, and I’m ok with that, for as long as I know those ropes are still there.

The mental health impact of chronic pain

However, despite this knowledge; insight gained through years of experience, I don’t relax. As from this stage in the daily cycle, the worry kicks in. Worrying about my job, the pressure it puts on my wife, am I doing a disservice to Dylan? Am I a shit dad? What if it gets worse than this? The list goes on.

There is a huge, but a little-told side of chronic pain mentioned even less than the awkward ‘how are you doing?’ that friend asks to be polite, but doesn’t really want to hear the answer to. The mental health impact of a life in pain – and this anguish, worry, mental torture we all put ourselves through has an impact over time – in the form of anxiety, panic attacks, depression and low self-esteem.

We’re told to pace, to not ‘boom and bust’, but when every day is the roll of the dice and those lower pain days come, it’s so hard to not cram in everything whilst the going is good. To run around with your kids, get the housework done, cut the lawn etc. Ultimately, we all know we pay the price for it the next day but those days when the fog clears and we can breathe again are so few and far between that just the smell of one of those mornings energises you in a way you could only understand if you experienced it.

You see, we don’t want to be sick. We don’t want to be immobile, lazy, stuck in bed all day or any of those other comments we’ve all heard a hundred times before – and wear the scars from, as trust me, each time that sort of thing is said, it cuts like a blade in my flesh. We want to be well, in fact, we’re bloody tired of faking being well all the time. We want to contribute, be good parents, have careers, be normal…be happy.

I don’t want to be miserable all the time, quiet, ‘off’ and all the other things that people around me kindly point out. I don’t want to spend my days concentrating so hard on the pain and my patience with it – making sure that my decisions and mood with people is not impacted by it – that each day passes me by without any memories from enjoying the moment.

I don’t want to be passenger, riding a taxi I didn’t call with no idea of it’s final destination, but for now, that’s where I am at. I didn’t ask for it and I am just as unhappy about the situation as you are, trust me – but empty words like:

Well you just have to get on with it’, ‘man up‘, or the hilarious (unfunny) ultimate low blow: ‘stop putting it on’

When you don’t know what to say, won’t help. Talking about it properly will. No matter how uncomfortable – and that’s what I hope to achieve with ‘Chronically talking about pain’.

To be continued…

I will be ‘Chronically talking about pain‘ each day through January – will you join me? Get involved with the #MyChronicPain hashtag and let me have your suggestions for future posts and podcasts this month in the comments.

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Arthritis and Psoriasis Patient Advocate, Writer And Consultant. Owner Of The Pain Company.

I share my story of Juvenile Idiopathic Arthritis to raise awareness and specialise in pain, parenting (with disability) and the mental health impact of living with chronic illness. I write and campaign for leading charities and organisations. In addition, I provide patient experience consultancy for both charities and global healthcare companies.

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