The London Marathon

So today I should have been running the London Marathon. My first marathon.

I have wanted to run London my entire life. I knew as soon as I started running it was going to be my ultimate target. Getting to this point was 2 years in the making.

Running is my favourite thing.

One year ago exactly today, I ran my first ever Parkrun. I wasn’t sure about going because not only was it chilly and hailing, I had a sore foot. However I went and it was a personal best by 2 minutes, and I was just seconds away from going sub 30 minutes. That sore foot was to be the beginning of my arthritis, and it was to be my last run for almost 6 months.

I did however manage a half marathon, The Great North Run. It was slow and I hurt a different part of my left foot, but I managed it. I felt fit enough, and crucially, strong enough. Just one week later though I came off anti-inflammatories and onto methotrexate and I’ve been on a downward spiral ever since.

Back in the summer of 2016 I applied for a charity place for Arthritis Research UK. I really believed I would get better and be back to my normal self in time. This hasn’t happened.

Today, on marathon day, I am at home, bedbound. Arthritis has taken my left shoulder in the last 4 weeks. I can’t dress or undress myself. I can’t open doors with it. On top of that, inflammation has spread to my top of my spine and my neck. If I turn my head even a little either side I feel like I’m going to be sick. That’s on top of the normal stiffness and swelling I have in both my hips, my ankles and my knees. I am in one of my worst flares for a while.

Watching the marathon on tv has been a painful experience emotionally. I should be there. There is no guarantee that I’ll be there next year but I have to believe it. I have my place for next year. It’s literally next year or never.

The comeback starts today.

If anybody wishes to support me in this impossible quest, please follow the link below

http://uk.virginmoneygiving.com/RebeccaNorth2

 

You suffer from what?

“You have what? Sorry-attic arthritis? Don’t you mean rheumatoid?”

Well, good meaning but misguided work colleague – no, I do not mean I have rheumatoid arthritis.

I’m sure most of us with psoriatic arthritis (PSA) have heard similar comments when explaining to people what our condition is.

We’ve all seen the blank stares looking back at us from people who don’t know what psoriatic means. The confused look when they try to get their heads around the fact that there are more types of arthritis than the two most famous ones, rheumatoid and osteoarthritis.

Granted, it’s not the easiest to explain. Even now, 10 months after I first developed PSA, I can’t answer the question of, “What is it?” much better than saying, “Very annoying and very painful.”

It is usually, but not always, an unwanted side effect of having another stubborn auto-immune disease, psoriasis. I find sometimes the best way to describe it is to say that it’s like the psoriasis on my skin (at which point I roll up my sleeve and show them my red and scaly arm), but instead it is damaging my joints through inflammation. It makes my joints swell so rapidly and to such a degree I often look like a misshapen version of the Hulk. They usually get the idea.

“You have arthritis? My Grandma has arthritis.”

Whilst I’m really sorry to hear that your grandma has arthritis, it’s unlikely to be the same kind. It’s not impossible, but it’s unlikely. Mine hasn’t been caused by years of wear and tear, nor from generally getting a bit older. Mine came out of the blue at the tender age of 27.

“I slept funny last night and have hurt my shoulder, I know how you feel.”

Thanks for the empathy, but sore bones aren’t just what I feel. Psoriatic arthritis also has a lot of hidden symptoms that people can’t see, and sometimes it’s easier to not mention them to people at all. For example, all 10 of my toenails have become riddled with psoriasis.

They have lifted off of the nail bed, they’re thick and crumbly and very very painful. So, I’m having each of them permanently removed. It’s grim, but necessary. The second toe on my left foot has fused in a bent position and will require surgery. It has no movement and means that I can only wear comfy sneakers with enough room to accommodate it.

Another hidden symptom is that the two toes next to the fused claw toe are starting to bend over each other towards my big toe, which will also require surgery. Who knew that something that is generally thought to just make joints hurt could cause such disfigurement and devastation?

I’m sure many of you also suffer from the horror of plantar fasciitis, and also have to use orthopedic insoles. Psoriatic arthritis is so much more than painful joints. Don’t even get me started on the fatigue.

Psoriatic arthritis can be a lonely condition to have. Those with PSA often feel left out because we can’t join the bigger club of rheumatoid. Sometimes I’m left feeling like a fraud in arthritis support groups online when I’m the only one with PSA. Meeting people who have arthritis or who have someone very close to them suffering from it, but it isn’t PSA, and they’ve never heard of it.

I’ve very briefly met one other person with it and it was a bizarrely happy moment. I’m not alone! Others like me exist! I’m not making it all up.

But maybe that’s the beauty of having PSA. There aren’t that many of us. We’re VIPs, specially selected to join the club. Sure, it’s not a club any of us would want to join, but membership is free so we might as well join and make the most of it. Chances are we’re the only person with PSA that a lot of people in our lives are ever likely to meet. It’s our duty to stick together to teach the world about PSA and banish those blank confused stares forever.

Welcome to The Sensible Shoe Society

Hello lovlies,

Welcome to The Sensible Shoe Society.

This is my very first post! I’ll try to keep it short and sweet, like me. I’m Rebecca. I’m 28, and I have some pretty terrible goings on in my joints. I have psoriatic arthritis.

I will never be able to wear non-sensible shoes ever again. That’s a lot to come to terms with at such a relatively young age.

It has almost been one year since I developed PsA and what a year it has been. Some good moments but a lot of sad, bad and painful ones too.

I’ve started this blog as a way of connecting with you fellow arthritis sufferers, spoonies and fatigue warriors. As a way to document what life is like with arthritis. To talk about how to travel in pain. To discuss different medications and treatments. And to talk about what life is like when you have a totally invisible illness.

I’m also hoping that lots of you can give me some wonderful sensible shoe suggestions!!

Please feel free to connect with me and point me in the direction of your blog.

Until next time,

Rebecca.