I took this photo while I was writing this blog post. Even with a thunderstorm brewing outside I have worked up a sweat simply by typing.
"It must be nice not having to get up every morning and go to work."
I really don't think people realise how much this comment really impacts someone with debilitating disabilities. I would love to get up in the morning and have a job to go to. I don't work because I am deemed to be 'unemployable', not because I am lazy or simply can't be bothered. I am too 'unreliable' to get a job - even aa voluntary one. In the past 6 months alone, I have had over 30 applications denied for voluntary positions, because even when volunteering, the people need to be able to rely on their team members showing up, and I simply can't guarantee that I always will turn up for my shift.
Life with chronic pain is unpredictable. Some mornings I wake in so much pain, I am unable to cry, to call for help or get up to go to the bathroom. On days like that, even breathing hurts. My muscles spasm with every breath and I try to take shallow breaths to ease the tension, only to give myself a headache from lack of oxygen. Days like those, I'm unable to even reach for the phone to make a simple phone call and if I could make a phone call, I would call for an ambulance, or someone to help, not an employer who is waiting for me to turn up - that's the last thing on my mind.
Of course, there are days when I wake up feeling great. I get so excited and pumped on those days that I bound around the house like a demented joey, racing from one thing to another, unable to focus my attention on one thing for too long. After being stuck in bed for so long, or unable to get anything done due to pain, when the pain eases, even slightly, I have a million items on my to-do-list that I just have to get done. There are dishes and washing to do, benches to wipe down, windows to clean - the list is endless (well actually my list is currently 23 pages long).
The downfall to the good days is that they don't last long. After expelling so much energy trying to get things done while I can, the following day I am guaranteed to wake in absolute agony - It's the inevitable price I have to pay for 'overdoing things' the day before. I am constantly being told by family and friends to slow down on the good days, so they will last longer, but the reality is they don't. No matter what I do on the good days, they never last. So I have to make the most of them when they come around and unfortunately I just can't go spending those days at the beach when I am running out of clothes to wear and forks to eat with.
For people who have not experienced chronic pain, it can be difficult to comprehend, especially since on the bad days chronic pain sufferers will often hide away and deal with it in silence, alone. It is likely that people will only see a chronic pain sufferer on the good days - the days when they seem perfectly capable of working. Don't get me wrong, I often have similar thoughts - on good days I think to myself 'Hey, I'm not so bad, I could easily work.' But unfortunately chronic illness does not work on a schedule and there is no way to know what days I will be capable and what days I won't turn up.
It is almost a full time job just keeping up with medical appointments. It's not as simple as visiting a GP once a week, there are also physiotherapist appointments, neurologists, rheumatologists, chiropractors and psychologists - I get bloods done every month, as well as appointments with pain specialists and meetings to discuss my pain management plan and mental health-care plan, because believe it or not, chronic pain has an effect on your mental health.
Often depression kicks in and I'm left wondering 'how come everyone else seems to be able to get everything done and I can't even summon enough energy to make a cup of tea'. I push myself to the limit just to wash my clothes and feed myself. Just going to the fridge to grab a drink often has me breaking out in a sweat. At the end of the day it takes every ounce of energy just to shower and get into my pj's for bed. I have lost count of how many times I have cried myself to sleep due to the pain a simple shower has caused.
I am not writing this to whinge, or get sympathy. I am writing this to help others understand what chronic illnesses and chronic pain can be like. While you may be picturing me sitting at home playing on my phone, scrolling through Facebook and playing games, I am more likely to be sitting in bed fighting back tears because I need to go to the toilet and I am unable to move. Right now I am sitting here sweating due to the effort it has taken for me to simply type out this blog. The photo at the beginning of this post is me at the moment, trying to brave a smile while struggling to breathe due to the stabbing pain in my back. I have just missed a call from my mother, because I don't have the energy to speak. Imagine yourself after a long run, where you're panting and your throat is dry and your eyes are watering - that's how I feel right now - and all because I lifted my laptop and typed this blog.
Please don't undermine someone with chronic pain or illness. Without experiencing the struggles they face merely trying to cope with everyday life, it is impossible to comprehend the emotional and psychological upheaval they are faced with every day. We are not lazy, we are not attention seeking, we are not making it up. We are in pain. We are tired. We are fed up with having to fight all the time - fighting just to keep up with our own daily requirements. We are tired of being misunderstood.
Chronic pain is not something we can control and it's not as simple as taking a pain killer and it will go away. Pain killers for chronic pain are often dangerous, have severe side effects and are to be used as sparingly as possible. Right now i am so tempted to take a pain killer, but I only have two left and I know that the pain is likely to be worse tomorrow, so I'm saving them. So for the time being, all I can do is keep holding on. Even though breathing hurts, as long as I keep doing it, I'll live on - what choice do I have?