21 years today- post viral disease

We were doing our preview show, I was in my dream role (Beatrice) and I was feeling great despite having cold/flu like symptoms. I’d been walking to rehearsals most days (an hour partly uphill) and I’d been stunt training for a few months- building on what I learned at drama school while also pushing myself further. Perfect to practice really throwing myself behind the scenery for the “gulling” scene.

And I really did.

I don’t know why I didn’t walk the back way to the back door when I got home but I think it had been raining so it was two sets of stairs, wide balcony and a short path all slippery at this time of year.

So as I have nice core strength I tried to climb the fence but slipped. Just a short swing into the fence, but I felt like I pulled my wrists .

I wound up waking mum up

I went to bed.

And I woke up barely able to move.

I thought- how the heck did slipping while still holding on to the fence cause my knees and feet to swell, for my jaw and elbows to swell, why could I only lie flat because it felt like I was tearing myself trying to turn over? That’s really how painful it is, but not just inside joints all the tissue that connects to bone, all of it, it was like hot forks shredding my tendons and muscles. And oh how unstable joints are even while swollen and seized up.

Most people think of Rheumatoid Arthritis as something that happens slowly over time.

This really was overnight and my life was changed forever.

I wasn’t able to pull out of the show.

I have no idea how I managed this but I either saw my GP or A&E to get a script for 40mg prednisone for the next week. We took several blood tests including Rheumatoid Factor and ESR. My ESR was so bad that we knew it was inflammatory. My Rf started at about 38- hinted at possible RA. But in another month it was 118. It was devastating.

My first lab for Immunology at University was an ELISA array of blood from RA patients. And we studied all the systemic effects of RA including on the heart and lungs. And so I knew this was for life. Some people go into spontaneous remission- I have refractive RA. Very hard to treat.

Luckily I was able to get physio, including strapping for the next two weeks as I could give that date and time to ACC. I even have Xrays of my wrists and while swollen all my bone and joint spaces looked beautiful. If we ever do get to the stage of being able to 3D print bone scaffolds and use our own pluripotent cells to truly recreate our wrists and safely? We can do that thanks to these xrays.

But I still spent most of my day in bed in pain with a high fever and absolutely reliant on the prednisone.

I have a diary entry from the time and it’s really painful to read.

No one understood what was going on, and some didn’t believe me.

For what it’s worth, an acute on set is not that uncommon, but also joint erosion tends to come after systemic damage- heart, lungs especially.

But yes, this is a post viral disorder I’ve lived with now for 22 years.

Over time it’s got more complicated, it always feels like I’m playing catch up.

I have a great team of HCW who really do care. My GP, our practice nurses, our receptionists. My Rheumatologist, our Rheum. nurses, haem. day stay, all the nurses who look after us.

And my family and friends who help so much.

I faced my mortality in those first few weeks though.

It made me determined to survive.

But so too has all of the investment we have all put into getting me here and now.

I don’t want to waste that.

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