author / blogger


Back on The Pain Gang

PAIN. It’s a funny old thing. Not funny ‘ha-ha’ naturally. In fact it’s about as far from funny ha-ha as an episode of Mrs Brown’s Boys. More like funny… ‘strange’. Like an episode of Mrs Browns Boys.

Pain is often all consuming and as vicious as your gay Uncle talking about that woman who works in the supermarket’s vagina following the birth of her 6th child. It asks everything from you and repays with nothing. It demands your attention. It is relentless in its force. All of this means that when any glimpse of relief from it does come, it’s like reaching the gates of heaven to be met by kittens in bow-ties. (We all have our own idea of heaven so insert your own if you have an issue with mine).

Like many, many people with an incurable illness I suffer from chronic pain.

Pain is not often the crux of my writing because I tend to favour focusing on talking about things I feel I have some semblance of control over; like my relationships, my mental health and my attitude towards my illness. But lately it’s been a main offender in my list of gripes so I suppose I should write what I know.

At the moment my pain is constant. It is a consistent and continual irritation. At the moment for me the hardest thing is attempting to balance my pain with my mood. How do you maintain a sunny disposition when your insides are screaming obscenities? I’ve go through several emotions on a daily basis when in pain; namely, irritation (not this AGAIN), frustration (I’m so sick of this), anger (this is beyond a joke),  self-pity (why is this happening to me?!), sadness (I’m so exhausted with this). It’s usually around the self-pity stage where I’m able to snap myself out of it. I try my utmost remind myself that self-pity doesn’t help and drops breadcrumbs leading me down a path I find it hard to find my way back from.

For most people who live with pain of some form or another we develop ways and means of finding some sort of comfort or distraction. It’s essential in order to keep our sanity. Pain can control us more intensely than your worst ex-boyfriend. Even without the abundance of pain relief we may need to guzzle on a daily basis, relentless pain itself can cause confusion and manipulate our ways of thinking all on its own. Harder still then when people on the outside of our discomfort judge, or worse, disbelieve us.

Patients are forced to talk about pain, and most specifically describe it, a lot. We have to do it for many reasons; but mainly to help our doctors solve any medical mysteries, to be provided with the pain relief we need, or to express why we are unable to perform a certain activity. I meant the hovering get your mind out of the gutter.   

The problem with talking about pain when you’re ‘in’ it, is that it allows room for little else other than feeling it. It can be genuinely difficult to even form a coherent sentence when you are experiencing it.  We have to tell the Doctor if its 'dull', ‘harsh’, 'sharp', 'persistent' and various other words used to describe your Mum. I don't really know what the majority of these words mean in relation to what we feel but we have to use something; it seems screaming incoherently and performing an elaborate death rattle gets you ejected from the ward and I can't risk that happening again.

I suppose that’s why doctors have developed these charts; the ‘how many out of 10’ and the ilk, for speed and accuracy in treating us. But those charts don’t generally apply when you are talking to people outside of the doctor’s surgery. The last time I replied “I'M A 10” when someone asked how I was I just got a reputation as a ‘narcissist’.

Pain is subjective and can be all encompassing. Tolerances of pain differ from person to person and can even change over time. When someone is chronically ill pain is a daily occurrence and something we don't always wish to wax lyrical about. That's why we try to adapt our lives around it. Sometimes that's not always possible but on good days, good moments, it is. We might not tell you we're in pain sometimes and that's OK. It's our choice and it might just be our way of distracting ourselves; so please be patient and don't expect miracles from us. Don’t let us see that we are frustrating you if we are. I know that may seem selfish but we honestly won’t have the energy to get into any form of debate with you, from brokering a trade deal between countries to forgetting to take the bin out, it’s all impossible. 

Give us a bit of time to feel ‘normal' again once the worst is over and don’t make us feel that we should apologise for it. Even though I’m 99.9% sure we will later anyway.

Kathleen NichollsComment