How I learned not to be limited by my chronic illness.
by Myfanwy Thomas, Run Buddy
Long before I was ever a runner (a recent change to my life in the grand scheme of things) I was an arthritic person. It seems as if there should be a noun for it. Arthritic? I am an arthritic.
The Early Years
Diagnosed at the age of 2 I have had arthritis for as long as I can remember. As a child I didn’t notice it very much, only that I couldn’t kneel like other children (still can’t, never will.) I don’t remember it ever stopping me doing anything else, and I don’t remember it hurting. But perhaps that was just down to childhood resilience. Children seem to be able to withstand or cope with much worse things than adults. My mum has reminded me that I slept with a splint on my leg at night for a while. Now she’s reminded me I’ve remembered how much I hated it!
I have always been keen on sports and physical activity. PE was one of my favourite lessons throughout primary and secondary school and I joined in with pretty much every sport I could in high school. I started going to the gym in my teens and doing aerobics classes. I knew I had arthritis but it didn’t really affect me at the time. I didn’t take any medication and didn’t feel any pain.
I had been diagnosed with juvenile arthritis and it was suggested that I had grown out of it. Great!
Then when I was 16/ 17 a number of things happened around the same time. I left school and went to college and left all my sporting and fitness endeavours behind. I had new hobbies – drinking, socialising and generally being a nightmare to my parents. I caught Glandular Fever which knocked me sideways for a few months. Then I got hit by a car. Nothing broken but I was just one big bruise from my neck to my foot.
And another thing happened: my arthritis came back, and this time it meant business.
Was it just a coincidence or was it linked to any or all of the above events? I will never know, and if it was there’s absolutely nothing I can do about it.
I had actually been discharged from the hospital a few years prior as the arthritis was deemed to have gone so I saw my GP and he prescribed me ibuprofen. Ibuprofen is fine for a headache but I can tell you, against full-on arthritis it does basically nothing. The weeks (months?) waiting to see a Rheumatologist were hell. Stiff, swollen achy joints, especially my knees.
I eventually got to the Rheumatology Consultant and to my surprise I was diagnosed with psoriatic arthritis. I didn’t even know I had psoriasis but apparently the itchy scalp I’d had as a child was exactly that. So it wasn’t juvenile arthritis it had been psoriatic arthritis all along. It had just been on a little break… Psoriatic arthritis is a chronic auto-immune disease with no cure; but as I’d always had arthritis as far as I was concerned I pretty much took it in my stride in typical teenage fashion. I was prescribed a DMARD (disease modifying anti-rheumatic drug) which helped to a point and that was that.
“PsA (like psoriasis) is an autoimmune disease, which means the body’s immune system mistakenly attacks healthy tissue, causing inflammation and pain and resulting in damage. Researchers aren’t sure why some people develop PsA. They think it’s a combination of having certain genes, which makes them more likely to develop the disease, and being triggered by something in the environment, like an infection, stress, physical trauma or another factor.” (arthritis.org)
Over the next few years my arthritis was up and down. I resumed my fitness activities going to the gym and swimming regularly as my dad paid for a gym membership for me. Running was something I only ever did to warm up at the gym – I used to think 20 minutes was a long run! (That really tickles me now.)
I had occasional flare ups. One bad one I remember happened when I went on a fly-drive holiday to California. My knees swelled up and I had to sit in the back of the car with the front seat down and my legs up as if my boyfriend (now husband) was my chauffeur. My Rheumatologist eventually persuaded me to try a steroid injection in my knees. I was terrified but once I realised how much it could help I quickly got over it. A few moments pain usually provides relief for a few months.
A year later we returned to the US for an epic 6 month tour in a camper van. I was really paranoid that I would have another flare – and had persuaded my doctor to give me enough anti-inflammatory meds for the entire trip – but for those 6 months I felt incredibly healthy! The outdoor life agreed with me – endless hiking, fresh air and healthy eating. I have never been so slim before (or since).
My life was to change forever a couple of years later with the birth of my first child. It is a well-known fact that pregnancy hormones can ease many illnesses and diseases and this had been the case with my pregnancy. However, after the birth I had one of the worst flare ups of arthritis of my life. It took a long time to control the flare and within a few months I was pregnant again so I didn’t lose the weight I had gained. After the birth of my second baby I was ready for the flare and resumed my meds more quickly (I had waited for 3 months after my firstborn as I wanted to breastfeed; my 2nd only got 6 weeks.) I also started exercising more seriously when I discovered the local leisure centre had a creche a few mornings a week. But my Rheumatologist was concerned that the disease was progressing so he prescribed me what is called a Biologic anti-TNF medication called Humira, which targets and blocks certain chemicals or molecules in the inflammatory process. This was like a miracle cure from the first dose. I can only describe it as like a switch. Sometimes you don’t realise just how bad you are feeling until you suddenly aren’t feeling like that anymore.
It’s funny but instead of looking at my life like “pre-kids/ after kids” or “20s/30s” I think of it as “pre and post Humira”. It was that life changing for me. The constant ache had gone. Suddenly there was the realisation, “This is what it feels like to be normal’ (although I still couldn’t kneel!).
A few years down the line we decided to have a 3rd child. This became a traumatic process. I had to stop all medications a few months prior to trying to get pregnant and it was horrendous. By the time I actually was pregnant I was struggling to walk. This was just nature reminding me that I wasn’t actually a regular person, I was a person with chronic arthritis. I was prescribed steroids as a ‘safe’ medication for baby and waited hopefully for the magic pregnancy hormones to kick in. They took their sweet time. I had barely been able to exercise at all during the pregnancy and by the time I gave birth I was huge.
My baby was nearing a year and I was still bigger than I wanted to be. I was taking my boys to a dance class each week for an hour – too far away to go home again and pick them up so I was just sitting around chatting. A couple of the other mums started going for a run during the hour and asked if I wanted to come along. “No’ I said, “I can’t run.” It had never occurred to me to even try, as clearly I couldn’t? People with arthritis can’t run. It’s bad for your knees!
Is it though? Really? A quick Google will show you numerous studies and articles which prove it is not https://www.womensrunning.co.uk/health/running-bad-joints/
Taking up running
But my friend Charlotte persisted and eventually I gave in. I don’t know how far we ran or how long we took on that first evening. I didn’t track it. I had on some old trainers I’d been wearing for years, some leggings which fell down and a coat into which I put my phone (that would annoy me so much now!) Looking at the route which became our regular I think it was about 7k. Not bad for a first run! And running was of course not that different in terms of impact to aerobics which I’d been doing for years.
I continued in this way for a few months. Only ever running with my friends about once a week during the dance class. I was enjoying it. My friends Charlotte and Katrin were training to run a marathon and their enthusiasm for running was certainly infectious, I went along with them every week and started to miss it if I didn’t. This was in the autumn. In the New Year in 2016 I decided it was really time to shift the baby weight as my daughter was nearly 2. I watched what I ate and decided to up my running. I went for my first run by myself which felt like a huge turning point. I was soon running a few times a week. It was also around then that I started to run during daylight. To me that seemed quite a big thing as it meant people could see me!
My first race
For most people their intro to racing might be a 5 or 10k race which they’ve trained carefully for and built up to gradually. Although now I’m a huge fan of a good training plan, for my first race in March 2016 I decided to sign up the week before. It was the World Half Marathon and I’d only ever run 6 miles. Charlotte and Katrin were running it as part of their training for London and Brighton marathons and I became completely caught up in their excitement and decided to just do it. A bit gung ho, but I was confident in my fitness levels even if I didn’t know what it felt like to run anywhere near 13 miles. Despite it being a hideous weather that day I absolutely loved it. I ran every step with Charlotte who supported me the whole way round and we came in at 2:18. I was pretty chuffed with that.
Six months later after following a training plan I ran the Cardiff Half in 1:59. I had never felt so well or so fit in my entire life. Instead of making my arthritis worse as I had always feared running might, I actually felt better. I could run despite my arthritis, and it turned out I was reasonably good at it.
In April 2016 I tracked Charlotte as she ran the London Marathon. I managed to watch her cross the line on a webcam – it was such an emotional moment. I wouldn’t say that’s when I decided I wanted to run a marathon but I did enter the ballot when it opened soon after anyway. I think my desire to actually run a marathon took a bit longer.
I credit Charlotte for getting me into running (Thank you Charlotte!), and in turn I credit another friend, Tanya for my running going to the next level. My son and Tanya’s son were in the same class at school so I knew her but not very well. Tanya says she didn’t speak to me very much as she wasn’t sure how to say my name! I’m not sure exactly how it came about that we first went for a run together but I think there was a group of us and we were doing sprint intervals around Roath Park Lake. There were a few of us who had signed up to the Llanelli Half Marathon so we decided to train together. The race came and went and Tanya and I became regular running buddies over the next few months.
My first Marathon
I’m not sure exactly whose idea it was, (probably we both egged each other on) but Tanya and I decided to run the Newport Marathon together which was to be held in April 2018. In December 2017, much to my surprise, I found out that I had won a place in the London Marathon with the sponsor New Balance. I didn’t even remember entering. London Marathon was a week before Newport Marathon. Obviously I wanted to run London as I knew how hard it was to get a spot so I decided I would run them both. After all, it would only require one training block, and I knew I wanted to run Newport with Tanya.
Training went brilliantly. I can vividly remember the weather was particularly good. It seemed every time we had a long run planned the weather was glorious – cold, crisp and sunny. All was going well….too well perhaps. To control my arthritis I am on quite a serious immunosuppressant which is not to be taken lightly.
A slight setback
I went for a birthday weekend away for my friend Sara’s 50th a few weeks before the London Marathon. I had a bit of a cold but I was looking forward to celebrating. I had quite a few drinks on the Saturday night (but not that many.) On the Sunday morning I felt like death warmed up and I admit I spent the journey home heaving into a plastic bag in my friends car. All very embarrassing but I just put it down to drinking too much and having a cold. I was under the weather for a couple of days until the Thursday. My husband was working a late shift and I remember thinking to myself about 6pm that I had to go to bed. It was as if a wave hit me and I could barely stand up. Somehow I got my daughter into bed and told my sons to sort themselves out. I spent the next 36 hours in bed, sweating and occasionally crawling to the bathroom to be sick. It was all a blur.
On the Saturday morning I got scared. I couldn’t even hold water down and I have never felt so ill in my life. My husband phoned the out of hours surgery for an emergency appointment, and my mum to come to take me there. I staggered to her car in my PJs and dressing gown, I was beyond caring. The GP took my medical history and as soon as I said I was on Humira for my PsA he nodded his head. By a miracle he had done some of his residency under my own Rheumatologist so knew the potential side effects to the immune system very well.
“You have the beginnings of sepsis so I’m going to get you admitted to hospital right away.” I was sent to the Emergency Assessment Unit at the Heath and admitted immediately. I can’t remember my mum’s reaction but this is what she said about it “I thought you were going to die in my car on the way, it was the most terrifying couple of journeys! And even when we got to hospital everything seemed to happen so slowly, you didn’t start to rally until the evening….”
Blood tests at the hospital revealed my CRP levels were over 400mg/l. Normal levels are around 3mg/l. I was given IV antibiotics and kept in for 2 nights. They would have kept me in for longer but I was keen to get home to the kids.
Crazily, three weeks later somehow I ran the London Marathon, with the support of my family, Tanya and her son cheering me on all the way round. It was an amazing day. The hottest London Marathon on record and my goodness did it feel like it. I did well for the first half then it was run/ walk all the way, alternately throwing water over myself or drinking it every mile. There was absolutely no way I was going to give up though. I knew my husband and kids were waiting at about mile 25 and I just had to get to them and then I would be nearly finished. My husband anxiously phoned me when I was a couple of miles away. “Are you ok? It looks like you’ve stopped on the tracker?” I hadn’t stopped but I was continuing very slowly. I found them at last, gave them all a sweaty hug and plodded on. Coming around the Mall past Buckingham Palace was an incredible experience. I was completely exhausted and staggered across the line. Then the tears flowed. I had run a marathon! It had taken me 5’27”.
Just one week later, on a rather chilly and overcast day Tanya and I lined up for the Newport Marathon. What a completely different experience. No sunshine or huge crowds but my running buddy with me for every step. We both had periods of wanting to walk but we kept each other going. Our families rushed around and appeared to cheer us in the middle and at the end! If I’d been alone I would’ve happily walked the last 3 miles but Tanya wasn’t going to let me give up. “If we keep going we can get that sub 5 hours.” We did, we crossed the line in 4’50”. What a high!
So that was 2018. In 2019 in addition to completing 2 more marathons (Manchester and New York – but that’s another story!) I added a new string to my running bow – running with a social group!
In March 2019 I went along to the first run of This Mum Runs (TMR) Cardiff. Although I ran with a small group of friends regularly I had never joined any kind of official club or group, feeling as if there would be too much pressure to run at a certain pace. A women’s social running group seemed ideal. To run at a chatty pace and make friends – it sounded great. And that is what we did for 6 months. Very sadly, something happened which meant that I and some of the other volunteers who lead the runs felt they had to leave TMR Cardiff. We were bereft. This group of women had become a huge family, a group of friends to rely on – a lot more than just being people we ran with.
And then, from the ashes of this experience She Runs: Cardiff was born. A running group for all women, regardless of pace, experience, fitness, age or ethnicity. A supportive, inclusive community run by volunteers. The group started with around 30 of us and we’re now at 1,400. It has literally changed my life.
Fast forward to now, a year on from establishing SRC. We have recently won the Run Wales Group of the Year 2020 award from Welsh Athletics. I know that, however I am feeling, wherever I am with my running I have the support of an amazing group of women. I have made so many new friends. Everyone knows my struggles with my arthritis and is incredibly supportive.
2020 was not good for many reasons. For me the Covid-19 pandemic coincided with my meds stopping working. It all stemmed from being switched to what’s called a ‘bio-similar’ medication (after the patent ran out on my original treatment Humira). I never settled whilst on the generic version and once I was switched back it was too late. It is known that the body can develop anti-bodies to the biologic medications and it appears that is what has happened to me. I had 10 great years on Humira, now is the struggle to find the next great medication so I can get back to what I love – running free! I have ambitions to run more marathons, to run my first ultra marathon, but before that happens I need to re-stabilise my disease. (I’m not allowing myself to contemplate that it might not happen.)
Nevertheless, I did achieve a couple of things running-wise in 2020. I ran a virtual ultra marathon – the Race to the Stones – 100k over seven days and I ran the virtual NYC Marathon solo (with Tanya popping up at various points to spur me on). Both completed through sheer determination rather than fitness or running ability!
That’s one thing essential to running that I have an abundance of – stubborn determination. Inherited from my late dad. Registered blind, he never let it stop him from doing anything he wanted to do (except maybe driving!) Today I may not be able to run, but I can walk and tomorrow is a new day. 2020 was the year that I accepted my identity as an arthritic runner. It’s no longer an oxymoron to me, it’s part of who I am.
It’s not running that’s bad for my knees, it’s arthritis. I am a chronic illness warrior and I will prevail!