I like to think of my diagnosis as something I have to care for, rather than something I am or have. It doesn’t define me – although its so consuming it often feels that way.
In my experience, having a chronic diagnosis is like being given a badly trained, enormous, ill-tempered and exotic dog. Think Newfoundland crossed with a Mastiff. Now imagine knowing nothing about caring for dogs, having no time to train one and living in a small space with a your family of 4. Your job is to keep it healthy, train it somehow, stop it from destroying everything, still do all your usual life stuff and leave the house dressed and with your hair brushed.
Imagine walking it. Its a constant fight for control as it drags you off the path repeatedly and an exhausting effort to get back on track.
Now imagine you have not one, but two enormous, untrained, ill-tempered dogs. That’s me.
Looking after a chronic illness is a big pain in the butt, and, for me, pretty much everywhere else as well.
It’s reduced mobility, sore feet, elbows, knees, hips, wrists, fingers, and everything else in between.
It’s not sleeping and being uncomfortable. Its not sleeping because you’re uncomfortable.
It’s chemist bills in the hundreds range – every month.
It’s an unrelenting tide of monthly blood tests and injections.
It’s treating the rash drug number 6 gives you.
The specialist and doctors appointments are time consuming, constant, never ending and expensive.
The torrent of well meaning yet completely annoying advice is relentless.
Looking after a chronic illness means saying no to things you want to do. A lot. It means letting people you love down, repeatedly, so you’ll be functional for school assembly tomorrow.
It’s forgetting where your shoes are and when that appointment was because your brain has been replaced with a useless amount of cotton wool.
It’s hating how useless you are and fighting hopelessness because you are overwhelmed by helplessness.
It’s falling asleep in the middle of your favourite TV show you’ve waited all day to watch with your husband, because the fatigue has finally got the better of you.
It makes you lose perspective, your temper, you way and almost your mind.
One thing chronic illness is NOT is terminal.
For that I am very grateful.