Recently, I've been doing a load of stuff around RA. I've done some interviews and worked with The National Rheumatoid Arthritis Society (RNAS) to raise awareness and break down barriers to better, faster care for patients. I've been connecting with loads of awesome people on Twitter and Instagram who are fellow RA sufferers. We've been sharing stories, and tips. I've been called inspirational. But I feel like a fraud, because between and you me, I'm bloody knackered.
So today, for example, I did this super hard session on the bike and then a round of circuits out in my front yard. If you'd driven past me, you would have thought I was a super energetic, slightly insane woman with nothing wrong with her, except a potty mouth when it comes to squats.
And after I finished, I took the photos and added the filters and drank the green pond water and # all the right stuff here on Social Media.
But there were bits I didn't take photos of, or mention. The fact my husband had to help me get undressed because I seize up so much after exercise. How he wedged in the shower with me, rubbing my legs down like I'm a race-horse to try and stop the pain I will feel later.
I don't photo all the pain creams, or the quilted dressing gown that I stay in round the house. I do not photo me in bed in the middle of the day, too tired to move, too tired to write.
Today I didn't manage to sleep. The washing and cleaning laughed at my pathetic attempts to tackle them. I gave up and went to lay in the garden, the sun intoxicatingly warm on my skin, pinning me where I lay. Guilt at jobs not done made me unable to fully relax. I thought of the washing that should be hanging on the line, my to-do list that covers both sides of an unpaid bill.
I know that when I have days like these, the best thing to do is set my alarm, sleep for a bit and do the jobs later, but it does not always work that way.
Tonight pushing the hoover around felt like I was trying to lassoo Mars and pull it towards earth. My fingers would not cooperate when sorting washing, nor would my wrists flick sharp folds in sheets, or pair socks into pear-shapes.
Tonight I shouted at my children, for being children. For getting out toys, for spilling peas. Tonight I told the fridge door to f**k itself because I did not have the energy to close it. I cried in the bath, amongst clumps of undissolved salts that are supposed to help.
They do not help. On days like today nothing helps. On days like today RA is bigger than me. If I'd not exercised it would not have been any better. I'd have been stiffer, lower in mood, deeper in my funk.
Today is injection day. As I said in the 'positive photo' I posted, I imagine the molecules shooting through my veins, mini head-torches on, or maybe glow-worms in jars, looking for the bits of my immune system that have turned to the dark side, and are trying to destroy me.
I imagine light sabers and epic battles. Plasters with super heroes on stuck to brittle bones.
I imagine heroic speeches, pre-wrestling match banter like The Rock.
THE ROCK: 'What's your name?'
MY RA: 'Rheumatoid Arthritis'
THE ROCK: 'It doesn't matter what your name is' then the Rock delivering his epic People's Elbow, crowd screaming, RA on its back.
I imagine my disease on the mat, tapping out. I imagine winning, winning my old healthy body back.
Ah, it's a good daydream.
I know injection day sucks. I know tomorrow will be better. I recently quit sugar in my tea and cut back on cake (if food is love, cake is my Romeo, my Ryan Gosling, my Daryl Dixon). It's adding to my grumpiness and self-pity. In the long term it will probably help my energy levels. In the short-term, it's torture. I want to inhale jelly beans and toffee poppets and those long strawberry laces with white stuff in the middle. I almost drank the kids conditioner because it is milkshake scented.
I could have a whole different IG account of my illness. It would be photos of the toilets I rush into for sharp, painful ten second sobs, before telling myself to pull it together and get on with it. It would be photos of my nasty black and blue feet. Videos of me trying to get downstairs in the morning.
I am so tired. Tired of having RA, tired of having infections and complications, tired of trying to get my pre-hysterectomy body back, tired of myself and my inability to give myself a break.
I worry the day I do, I'll never get up again. RA is being at war with your own body, you can't ever drop your guard, and mine is pretending to feel ok, when I really want to cry and be carried home.
And on that note, dear reader, I'm going to sit by the fire until I fall asleep, then my husband will help me up the steep stairs to bed where I shall fall asleep mid-sentence and dribble on his shoulder.