Words by Lucy Sutton-Johanson

Photo credit: Pinterest

I'm at a wedding.

It's the usual predicament of being sat at a table with, mostly, people I don't know.

Small talk is inevitable. _That_ question is inevitable. I can sense it's fast approach…

“So, what do you _do_?”

 I do a lot. I do yoga. I meditate. I write. I paint. I watch clouds. I grow flowers.

And I live with Psoriatic Arthritis.

It started in my right hand. I'm right handed. I was 12. Over the past 20 years it's spread considerably, that's why, if you ask me what I “do” for a living the answer is: nothing. Of course there are jobs I could do, but they are so rare that for most of the past five years, since the arthritis progressed, the answer has been the same. It won't always be the same, but for now it is. And I hate that bloody question.

Except now, my lack of employment has become acceptable, because in October 2014, I became a mum. Oshan Bear was born and at last, I had a job that I was qualified for better than anyone.

The morning he was born, by planned c-section, the surgeon lay him on my chest and we had a long look at each other. “Hey kiddo” I said. “Don't worry, I got this.” He lay his tiny wet head on my breast as if to say “Course you do, Mama. I know you do.”

You might wonder how that works, which mum tasks I struggle with and the honest answer is everything. Almost all my joints are affected, worst are my fingers, toes, jaw, elbow and right knee. And the tiredness. The exhaustion. I often see quotes online about “you don't know tiredness till you have a baby...” and I always want to cross out baby and write in arthritis. My immune system uses up so much energy attacking things that should be left alone that sometimes it's like the strength has been sucked out of my limbs and replaced with pain. My fingers swell up like sausages till they can't bend. The weight of my head is too much for my neck. And this was before baby. Now I have to use those limbs to pick up a two stone toddler (who didn't sleep for the first six months of his life...) That strength doesn't come from my limbs, it comes from my heart. Arthritis doesn't mean I can't do all [most of] the things a little person requires, but it does make them that much harder. Every day is a battle. There's a reason the hash tag for psoriatic arthritis is #PaWarrior.

Of course I have help - not that often, but enough so I don't get totally burnt out. I also have an amazing man by my side, but the reality is one of us has to work, so it's mainly me and Osh, muddling through together, like a little team. If the game has to be “mummy lays on the floor and Oshi pokes things up her nose” then that's the game for an hour.

And just like what people do for a living doesn't define them, arthritis doesn't define me.

People are pretty good at adapting, kids are amazing at it. Oshi won't know any different and I won't be any less of a mum. He will be as played with, as well fed, as loved as any child to a fully able parent.

And as for what I “do”?

Just like all less-able parents - I'm a warrior.