Living with Rheumatoid Arthritis (RA)

It was 4am on Sunday morning. I woke up in agony. I would not have been surprised to see my foot on fire, the pain was so raw.

I had no idea why.

We drove to the hospital en masse at 7am. My poor husband tried to take my weight and keep control of the children too. It was chaos.

At one point he put me in a wheelchair, then turned to grab one of the girls. When he turned back, I was halfway down the hill, screaming.

I had x-rays for fractures and broken bones, but they could not see anything wrong. I was sent home with painkillers and told to rest.

I got worse. My foot went blue and twisted inwards. I lay on the sofa confused and feeling guilty for not being able to help with the girls. Even the breeze blowing on my foot bought tears to my eyes.
My exhausted husband frantically read the internet each night as I lay in boiling hot baths, my only respite.

A week later, the same thing happened in my left foot too.

I went to and from A&E looking for answers but found none. In the end, a doctor with a daughter at the same school as mine noticed me hobbling. He took me seriously.

Within three days I was in front of the Rheumatologists. When I told them my story they were sceptical.
Like the others before, they thought it would be running injuries.

Then I had an MRI scan.

And then it all changed.

I will never forget the day I was told I had Rheumatoid Arthritis.

I remember the worn brown leather of the chair I was sitting on. I remember my husband was late coming into the appointment because he was trying to find somewhere to park. He walked in and saw the leaflets laid out in front of me - ‘Living with RA’.

We had both been hoping for a different answer.  Any other answer.

The specialist looked sorry, and spoke quickly about medications and steroid jabs. I felt like she was talking in a different language. I kept looking at my husband for clarification, but he looked as lost as me.

He held my hand when I cried, searched in my messy handbag for a tissue. He tried to cheer me up by pulling out a toy snake the girls had planted in my bag. I don’t remember much about going home. I remember him putting me to bed, and me letting him. I never let him do that before.

That seems so long ago. Now I can recite all my medications and what they do. Now I know all there is to know about NSAIDs, Disease modifying anti-rheumatic drugs, or DMARDs, Corticosteroids, also called steroids. I’m taking them all.
 
None of them are working yet.

RA is an old fashioned illness. It defies the modern trend of instant results at the touch of a button, or the swallowing of a pill. It’s going to take time and a team of people to get my illness under control.
 
I find this hard. I am possibly the most impatient person in the world.  I don’t like waiting for the bath to run, let alone wait to be able to walk again without pain. On my worst days, I crawl round the house. On those days I am angry and bitter, refusing help, determined to be independent. Until I can’t get onto the loo. Then I cry and sob and my husband lifts me more gently than I deserve.
 
One of the things I hate most about my RA is that it has stopped me running.
 
Running was the thing I loved to do best in the world. I used to run 10k three or four times a week. My heart would pound and the blood in my veins would sing.
 
People tell me I am a good writer. That fate lies in the hands of agents and publishers to be proved.

People tell me I am a good mum. My children have a life to live before we will know how well I turned them out.
 
Running was the one thing I knew I was good at. The speed and distance monitor told me so.
 
When I was running, I was not a mum, or a wife, or an aspiring author.

When I was running I was just me. Me against the world. I pounded my anxieties and frustrations and limits into the ground and trampled on them as I passed. Running made me feel invincible.
 
I ran everywhere, like a kid does. I’d run down the drive to the car. I’d even park at the back of a car park, just so I could run across it.

I cannot run now. I don’t know if I will ever be able to run again. That is a very hard thing for me to write, and even as I do so, I am not sure I believe it.

On my good days, when I am out, I sit and look at people’s feet. I used to look at their hairdo’s and handbags, now I look at how they walk.

I envy every pain-free step they take as I sit, with my cup of tea and my crutches and the weight I’m slowly putting on over the waistband of my jeans.
 
There was inevitability about me getting sick. My mum had severe RA too when she was younger. Hers came on following the shock of a car crash. No one knows why mine came on. That’s hard because it leaves me free to wonder what it was I did wrong.

When I tell people I have arthritis, they don’t think much of it.

They say “Oh yes, I have a bit of that in my finger. Or “My mum has that in her hips.” They mean osteoarthritis, which is very different. Rheumatoid Arthritis is a chronic disease where the immune system attacks itself.

People try and help. They cut out magazine articles about giving up tomatoes and taking up yoga.
I take them to my health team, who shake their heads sadly and keep telling me to injecting Methotrexate each week instead.

Methotrexate makes me feel sick and gives me mouth ulcers. My husband does the injections.  He wrestles to get the ridiculous rubber gloves on his big hands. He even wears the disposable apron.

His brow furrows as he checks the dates. He places his fingers so carefully on my skin to measure where to inject. He holds it in for five minutes and I know it's hurting him more than it's hurting me. After, he wipes the blood away and kisses me.
 
I try to swim. He meets me at the pool-side. He carries my bag, lifts me into the water and swims behind me. He tells me to keep my head straight or my neck will hurt after. He tells me he loves the view back there behind me, making me laugh.

He puts me in the car afterwards, and we go home. I eat the organic cereal he has sourced with rice milk and banana.

My three small daughters take turns to bring me my slippers and sticks. They sit on the sofa and stroke my feet with their soft star-shaped hands. It works better than any painkiller.

They tell people about my poorly feet and how one day I will be well and I will run around with them again.

They don't mind how slow I walk, and they always want me to come out with them, even if I can't even get out the car.
 
If love could cure an illness, I would not be sick.

This is my story of Rheumatoid Arthritis, part one.


Guest post from a fellow RA Warrior

Posted Wednesday 18th May 2016   By Ericka Waller

So I woke up this morning to the most amazing email from Stephen. He explained how he was also a keen sports person until RA robbed him of his energy. Like many of us, he has good days and bad days, but his RA never goes away. It's always lurking round dark corners, waiting to jump out. What I loved the most about his email, aside from his honesty, which I am honoured he shared with me (I love with people contact me and say 'you struck a chord with me' because for so long I felt so alone and had no one to talk to), was this genius poem, which he wrote and has allowed me to share with you ...

My RA story

Posted Wednesday 18th May 2016   By Ericka Waller

I have so many people contact me to tell me thier RA stories. My heary hurts for all of them because I know what it feels like to feel lonely and alone with this awful illness. Below is an interview I recently did for an RA magazine. I thought I'd share it here too, it might help shed some light in the dark.

Parenting with an Rheumatoid Arthritis

Posted Wednesday 18th May 2016   By Ericka Waller

I am a 34-year-old mum of three and I have Rheumatoid Arthritis, an auto-immune disorder that effects joints, causing swelling, stiffness, pain and exhaustion. When people hear the word 'arthritis' they often think I mean a sore knee or a dicky hip, like your nanna has in cold weather. RA is a chronic auto-immune disease that affects the whole body. There is no cure. When the Specialist diagnosed me, I thought she had made a mistake. I was 30, had just had my third child and exercised five times a week. When she went on to list all the medications I would need to take and their possible side effects my head swam. My whole life changed in fifteen minutes.

Can a Superhero get a day off?

Posted Tuesday 17th May 2016   By Ericka Waller

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.

Feeling like a Warrior

Posted Monday 12th October 2015   By Ericka Waller

So yesterday I completed the Warrior run. 10k of mud, rivers, nets, tunnels, tyres, obstacles, monkey bars and being brave. I can't walk today. There is no part of me not bruised, grazed or aching. My arms are so weak I crashed into the car next to me on nursery pick up. Luckily I only took off a wing-mirror. I bent down to retreive it and could not get back up again.