I haven't said much about how I feel lately.
You see, I have a "long term variable" condition. I mention it a lot. Mainly I say how they are largely ignored by politicians when considering welfare systems, mainly baffling to ATOS assessors with their tick-box computers and one-size fits all conclusions. Even doctors and consultants often misunderstand them.
One day you can be flat on your back, unable to move with exhaustion, the next you can be building a tent in the back garden with excited children. One day you can be dazzled by dramatic ambulance lights, the next, having a nice spa day with friends.
Since a few weeks after my surgery, I've entered the "Look Papa, look, I'm a real boy" stage. As I mentioned a few weeks ago, that doesn't mean my "fine" isn't your "I want my Muuuuuuummmmmy" but I like it. A lot.
Trouble is, if I tell you, I will invoke the wrath of the terrible, vengeful Sickie-Jinx. (Shhhhhh, just saying it makes the beast stir) He is the most horrifically evil, most cruel of all the Jinxes. He waits, until you dare to wonder; until that fleeting hope flickers across your mind, just for a second. "Could this finally be the time I stay well?" Just for a week or two, the Sickie-Jinx lets those thoughts start to whirl and bubble-up - "What if I could work again? What if I could have a "normal" life?"
If he feels particularly vengeful, he lets you enjoy a beautiful perfect day, or even a week away - on an aeroplane and everything - where your husband-carer might again become your lover-friend. He might let you take the kids out for a whole day, laughing and carefree as you walk and skip or even climb a tree with them. He will build you up until you begin to believe it could all be so, so different.
It's the belief that he feeds on. As soon as the belief is large enough, as soon as it starts to fill you up he swoops down and sucks it out of you. The very day after you built that tent or came back from that holiday, still smelling of coconut oil and sangria, he burns you down with dreadful fire. He shoves his claws deep, deep in and the pain is back. He thrashes and writhes, with you in his jaws until the exhaustion is unbearable again.
He mocks you and plays with you and the despair is deeper than before as it fills the gaps that hope had filtered into. He breathes fire onto your hopes and dreams until they are reduced to dust all over again.
Does this sound defeatist? Does it sound pessimistic? Well, that's because you never met the beast. For 28 years of my life he has slumbered, waking at the moments I least wanted him to. The night of my 16th birthday party, the day I got my acceptance letter from university, the day before my wedding, the day I got my dream job, the day I stopped breastfeeding my child and countless other precious days.
Can I slay him? So far, no-one has found a weapon deadly enough. I've tried code-words. When caring friends or desperate mothers ask "How are you" I answer "Hmmmmm" with an encouraging raised eyebrow and imperceptible nod of the head" but he always hears.
So if you ask how I am, If it's OK with you, I'll just answer "Oh, not too bad." I'll try as hard as I can not to dream, not to believe. I'll live one day at a time and manage whatever I can until the beast stirs again.