The Hidden Disabilities of Ericka Waller
I was diagnosed with Rheumatoid Arthritis just over ten years ago, and then Fibromyalgia about a year later.
It has taken me years, (oh, who am I am kidding, it is still taking me years) to accept this condition. When there is no provable blood test, no absolute certainty to something, I find it hard to believe. I feel like I'm making it up.
My Rheumatoid Arthritis is under control so why am I exhausted all the time? Why does it hurt to put my elbows on the table? Why did I have to stop wearing bras that fastened at the back? Why can't I get through the day without a nap? I could go on and on and on. (I do go on and on, just ask my poor husband, and I’m sure my Labrador’s ears are close to bleeding after ten years of my moaning.)
My life is hospital appointments, infusions. Blood tests. Doctors appointments. Pain therapy sessions. Blister packets and vitamins and trips to the chemist. Autoimmune diseases like to get their tentacles in deep and far and wide. I await more jaw surgery, more bowel surgery, more investigations into my bladder. This is not just my sick life. This is also my husband's life, and my children's life.
Why can't mum come to the football tournament? Because it's too long for her to stand up, remember. It's windy there and that is bad for her. She has to sleep.
Why can't mum take me out for the day?
Why can't mum do my hair this morning?
Why can't mum, why can't mum.
My children bring my heated wheat wrap, my heavy blanket. Tuck me in when I am asleep. Tiptoe round the house. They are used to being told I've been taken to hospital. That I'll be spending the night. They have become little Mumma's and I’m proud but also, I’m heartbroken. I used to be fit. I used to be unstoppable. I had three kids under five and I was owning it! Until one day when I suddenly wasn’t. My youngest daughter, Bliss, has never know me before, when I was well. She has only ever known Ericka Version II, the faultier model. Prone to breaking down. No guarantee or exchange options.
My illness is slowly robbing me of time. My new painkiller combination helps but makes me sleep even more (and the dreams they give me… why is my brain such a dark place?! My husband dreams of Spurs ringing him to ask him to play in the championship final. I dream that everyone I love keeps projectile vomiting on me)
The steroids help but make me wired. And make me put on weight, which is another trigger for me (you are so lazy Ericka, get back on your treadmill, Ericka). But I can't run anymore. These are my new thighs and buttocks people! I am sagging like an old deckchair.
I can no longer do the things I used to do. There I said it. I will take your help please, but only if you offer. I’d love you to open that door for me, carry that dog food to the car for me. Help me with my shopping bag. Open that jar. Put on my socks, but I’ll never bloody say so.
Fibromyalgia gives excellent brain fog. I forget dates, people's names. What yoghurt is called. The word 'Flooom' means anything in this house. I use it to fill in forgotten words. To call the dog, the kids. To get you to pass the salt.
My house is getting more dog hairy, much as I hate it. I don't always get to the bottom of my very ambitious to-do list. Understand, I am a pernickety Virgo arsehole who cares about dust under the sofa, about cobwebs and hoovering bed slats. I seethe when I cannot clean. I can smell dirt a mile away. I want to be able to eat my dinner off the floor even I cannot bend down to get on the floor.
I fail, all the time. I cry, a lot. I rant, a lot. I sleep a lot. I am not the woman my husband married. Not the mum I had hoped to be. The only answer is acceptance and I'm not very good at that. I rage against any system of compliance. In my heart I'm an agitator. The rest of me is a dormouse.
And yet, I have a family who loves me, for who I am as much as who I am not. I have books. Books that take me to any point, any place in time. I can fall in love, fight a war, go to space. I can do anything in between the pages of stories. Shout out here to all my online and real life book pals who recommend me new reads that take me away from myself and all this illness jazz.
And I have a lovely home. I have the best dogs who are happy to sit next to me for hours. I have Earl Grey tea and sourdough bread. I have people who don't seem to mind when I forget their names or fall asleep on them.
My life is smaller than I'd like. I guess I am not going to conquer the world after all. I probably won't make it to all the places I'd like to go. Sorry Dr Suess. My life is a day-to-day thing. Today I wrote this, and now I'm going to eat toast and after that... who knows, possibly a nap.
