Being chronically ill is absolutely draining and it can leave a person utterly wrung out to a degree that you can’t imagine. We can be wiped out for most of the day after we have cleaned our teeth (true story – I was literally crawling back to my bed with tears in my eyes). It is a truly shit experience.
Now if you have ever felt this way, you will understand where I am coming from. If you have no clue what I’m talking about, it’s going to be a head scratcher for you. 12th May is Fibro awareness day. Fibromyalgia is the bane of my life. It has destroyed me in so many ways. So I will happily sit in my wheelchair and stamp my booted feet to raise awareness of this utterly vile shitbag of a disease. If you are newly diagnosed then there is a really rather brilliant piece written by a rather fabulous lady called Christine Miserandino. The piece itself is called “the spoon theory” and you can find it here…
Seriously, if you really ache to understand why your partner/best friend/colleague feels the way that they do, then I urge you to go ahead and read this piece of writing. Of course, there are many other pieces written and available on the internet, but I have found Ms Miserandino’s to be the best about.
Where do I start with how my illness has decimated my life and just how certain I am that I know people look at me when they think I’m not looking and mutter some poisonous bullshit under their breath when they think that I cannot even hear them. Well guess what bitches? It’s my body that doesn’t work. I have one ear that can hear just fine and that is more than enough to hear you (if you wanted to know, I sustained hearing loss in my left ear after a firework was thrown at me and exploded near my head).
I was a qualified nurse for 15 years. I worked long and hard shifts and spent many days trying to advance my professional ability. I ended up working as a Macmillan nurse before I escaped a very violent marriage. I ran back home with my kids to Scotland and then mcy diagnosis of Rheumatoid Arthritis (received in 1998) began to make life real hell for me as a nurse. The time came, after that , for me to take a different career pathway.
I had to give up the career that I had loved for fifteen years and that just hurt so much. But my body just was not able to cope with the physical demands of a career like nursing. We had been through a hellish time and I needed to be around for my kids. I took up a part time job in my local food mini market (Co-Op for anybody British).
The kids settled after a while and I was able to extend my hours and earn a little more for them. However, my body had been pushed beyond its limits thanks to the pressure of being a carer and then a nurse as well as all the years of physical abuse that I endured, and in February of 2009, my body finally knocked me on my ass.
I woke up one morning and I couldn’t move. I could only just about flutter my eyelashes and that was it. My partner was amazing. He got me to a doctor who sent me straight in to hospital. After a butt load of tests and scans, I was rocked by a long, long list of diseases. As well as my rheumatoid arthritis which I knew about, I now had osteoarthritis in my spine and neck. I had Fibromyalgia and Chronic Fatigue Syndrome, I had osteoporosis, Ehlers Danlos Syndrome Type 3, and had also had a stroke and a cardiac murder as well as a small congenital hole in my heart.
This list of diseases has changed my life for the worst. I am now wheelchair bound and need a carer to help me do pretty much everything that I used to be able to do for myself.
So here are the things you don’t think that we notice but we do: When we park in a disabled parking space and our carer comes round to our side of the car with our wheelchair, we see you looking at us like we are just lazy and we don’t need to use that space. Believe me, if I had a choice, I would push my wheelchair into the North Sea if I could! I need that parking space and have more right to it than the yummy mummy in her Chelsea tractor who has just popped in for croissants and coffee on the way home from dropping little Tommy at school. Where is her dirty look? Is it because you think I look too young for this chair? I see your dirty look, and it hurts.
We see you give the dirty look to the young woman or man who desperately dodges into the disabled toilet in the queue at the cinema. You judge them as lazy or not deserving of using the disabled loo. Well just think… that person may be in desperate need of changing their colostomy bag before it bursts all over the cinema foyer. Think people!!! Your selfish judgement can really cut like a knife!!! When that person gets into the bathroom with tears stinging their eyes, they feel ostracised for their illness. As they open the bag to empty it, someone from outside yells, “Eeeeew, what’s that stink?” The person in the toilet? They notice what has been said.
You look at me in my wheelchair. You judge me. I’ve heard people whisper “She’s too young to be in a wheelchair” (I’m 45 – what age do have to be before my butt cheeks can kiss the holy grail of a plastic cushion that is going to make me sweat like a pig all day?) You think I like being stuck in this chair? I hate it with a fiery passion I really do!
So next time that you see someone that doesn’t belong somewhere in your judgement just stop and think. That Spoonie may have a damned good reason for doing what they did. We are invisible illness warriors, but your words can cut us down. THINK before you speak! We hear you every single time… and guess what? It hurts.
Be kind to each other.x