1) Introduce yourself and tell us a bit about you.
Hi my name is Ken Byrne, I live in Ireland. I am married to Joan and have three awesome kids Hannah, Jessica and Adam.
I work as a Business Analyst in Dublin City mainly in Financial Services.
I have been sporty all my life, I played soccer for a team who managed to go 206 games unbeaten stretching over a 7-year period which earned us a place in the Guinness book of records. I also manged to get 7 caps for Ireland in that time too which I am really proud of.
I played soccer most of my life really until I started showing signs of my disease in my ankles. I have been into triathlon now for about 6 years, clocking up a number of sprint distance, a few Olympic distance and one Ironman 70.3. Last year I completed the Dublin City Marathon even when on the list for a new hip, this was a bucket list thing and one I am very proud of doing.
2) What illness/condition/disability do you have? When did your symptoms start? And what were they?
I was first diagnosed with Rheumatoid Arthritis (RA) then with Hemochromatosis and my latest diagnosis is Inflammatory Arthritis.
I first noted my symptoms about 12 years ago, I was just finding it harder to get out of bed in the mornings, I was stiff and sore, like an old man (or how I would imagine an old man would be getting out of bed like). I kept saying I was too young to be feeling like this, I was always tired and everything seemed to be a struggle.
Then my hands started to get really sore, I couldn’t form a fist. So, went to my doctor and he took a blood test and gave me steroids. I was back a week after the steroids finished with the same problems. He said the tests were negative but he sent me to consultant who took one look at my hands and confirmed RA.
3) What was it like getting a diagnosis?
Getting the diagnosis was okay, I was pleased I knew what the issues were and that I could do something about it. The doctors were pretty poor to be honest, the consultant I went to barely looked up from his desk when I went to him and he wanted me to pay a stupid amount of money for that pleasure.
I actually left and went public and got more information and attention there. To be honest I read about “a team” to manage your [chronic illness] “journey” but in reality, it’s not there at all. The doctors don’t really care they just seem to guess and see what drug will work for you and hope they are right. I get the feeling they are not interested in your overall well-being, just your pain. No doctor has ever asked me how I actually am, mentally etc. not one time.
4) Had you heard of your illness/condition/disability before you were diagnosed?
Yes I had heard of RA but had no understanding of it. I had never heard of Hemochromatosis and even though it’s the third most common disease in Ireland it goes untested and unnoticed.
5) How did you feel when you were told your diagnosis?
Oddly happy, at least I knew it was not just me in one sense. I could now actually try to manage it and even though there is no cure I could get maybe the right treatment that would help me feel better. I was feeling so bad before knowing that anything would have been better than that.
6) What treatment did you have? Were there any problems? Did it help?
I was put onto Methotrexate initially, then I was on Humera which involved injecting myself twice monthly. When I was diagnosed with the HA I was actually taken off both as my liver was not in a good way due to them. Also the treatment for the HA is having a pint of blood removed, for me it was a pint a week over a year.
7) Did family/friends/colleagues take it seriously? Did they support you?
Mmmmm , not really at first to be honest. I didn’t really tell a lot of people , my wife was supportive but as I got worse and then took on triathlons there was more concerns alright.
8) How does your illness/condition/disability affect your life?
I try not let it affect me too much but I do have to acknowledge it at times. Right now, I am waiting for a new hip and I am in a lot of pain and discomfort, walking any distance now is quite sore. I also have no cartilage in my ankles because of the disease and some days both ankles just ache.
Fatigue is also a factor; some days are just so hard to get through especially towards the end of the working week.
I am in constant pain of some sort 24/7, sleeping is awful at times, being in bed sometimes is just so uncomfortable. There are times I would be knackered and go to bed early and still be awake hours later .. then I have to get up for work.
9) What is something you wish people knew about it?
Just the fatigue and bad moods. It’s not that I am lazy, it’s just sometimes I just can’t do it; its absolutely sole destroying at times not being full of energy. I wake up tired at times.
10) Anything else you’d like to share about it or your experience?
I found exercise six years ago, I started to feel better and back to me a bit so I started back in the swimming pool not being able to swim one length. I kept at it, lost weight and started smiling again. Then did my 1st Triathlon which I absolutely could not believe I could do.
I absolutely advocate for exercise for people with autoimmune disease, I totally know it’s the last thing people want to do but it triggers endorphins and natural pain killers and to be honest gets me through the day.
I would love it you read my blog that tracks my progress through training for Ironman 70.3 and a bit about the marathon.
I am hoping to do some talks in 2019 about my journey and exercise and maybe to try to inspire someone to get moving and make a change to their life.
If you want to learn more about Ken’s journey with chronic illness and the incredible things he is achieving despite his diagnosis’ then check out his blog here: https://thearthritictriathlete.wordpress.com/
You can also follow him on Instagram and Twitter.
Instagram: @thearthritictriathlete
Twitter: @thearthritictri
Ken is also an ambassador for Sundried Clothing, a great athletic clothing company and has kindly given my readers a fantastic 50% discount code. You can find all their details over on Ken’s Instagram and the discount code is “BYRNE”.
