I wish people understood that I live my life in pretty much constant pain, that I survive by popping painkillers, high strength codiene every day.
I wish people understood that each day feels like an uphill struggle, that having a jangling, aching pain drags you down and that there are times when it’s just all too much.
I wish people understood the sheer amount of effort it takes to do normal tasks and the frustration that I can’t do what I want.
That when I do the things others do, it takes planning and supreme gumption and the knowledge that it will wipe me out and take away my ability to do other things.
That when you ask how I’m doing, it’s hard to know how to answer. The answer is generally “pretty shit” but I don’t want to bring everyone else down.
I wish people understood just how tough it is to work, that I push myself daily to get through the day when the pain, fatigue and brain fog make me want to crawl into a duvet and cry.
That to work means cutting back on pain meds and weighing up the benefits of pain relief with the foggy head, inability to drive and sleepiness and I have to make that decision every day.
I wish people understood fatigue. I’m not just “a bit tired”, it feels like a mix of the worst hangover and feeling like I’ve run a marathon. Every cell in my body is screaming at me to stop and lie down and rest but life still has to carry on.
I wish people knew I’m not lazy.
I wish people knew the guilt I carry every day, that my illness makes me not a good enough mum, not a good enough wife, friend, employee, human.
That I worry constantly that it will all get too much for those around me, that I won’t be able to do my job, that friends will get fed up of me cancelling on them, that Timm will get sick of looking after me.
I wish people understood that no matter how many surgeries I have, it never gets easier, it gets worse. It’s scarier every time, knowledge isn’t always a good thing.
I wish people understood just how fed up I am of being ill, being in pain, being tired.
I wish people understood.