Posted on 18 Feb 2021
My name is Clive, I am 66 years old and I was born in Nottingham in 1954.
You may think that this would mean that I am 67 years old. However, as 2020 was such a bad year I have decided that it simply doesn’t count. I have been living with Rheumatoid Arthritis (RA) now for over 30 years. I have adapted to living with it in so many different ways, and I have only recently realised the extent of the changes that I have made in my life because of it.
Before we get started, there’s one thing you should remember: “You are the expert on you.”
I was told this by Sister Liz in the RA Clinic – and it is so very true. Don’t be daunted by all of the possible reactions and issues that I have experienced and will tell you about. We are all different but you are the expert on you.
My early experience with medication
Ever since I was a child, I have suffered from depression.
However, when I was younger, depression wasn’t understood and talked about the way that it is today. I spent years of my life seeing psychiatrists and psychologists, and I eventually ended up with a medication routine that worked for me in the end (and I’ve probably saved an absolute fortune in therapy at this point). The medications I tried throughout my younger years produced a lot of side effects, and the entire experience left me very aware of any changes caused by treatment, regardless of how mild or severe they may be.
How it all started
Symptoms of RA first occurred for me when I was in my mid-30’s.
I would have an episode of joint pain in just one of my joints, usually after some vigorous use or slightly traumatic event, such as using a heavy hammer to remove old plasterwork. However, instead of being a normal ache or injury it would be severe. I can still recall the eye watering pain in my shoulder from that episode, possibly the worst I have ever known. Sleep was impossible other than catnaps whilst sat in an armchair packed with cushions and pillows to take the weight off of my shoulder.
After several years of these episodes and treatment for more obvious causes, such as frozen shoulder and ankle sprains, I began having blood tests via my GP. These were coming back negative due to the time lag between the flare and the blood test but my GP told me he was not satisfied and referred me to the local RA Clinic.
Diagnosis and treatment
My initial diagnosis was for either RA or Psoriatic Arthritis (I have always had very small patches on my shins). The treatment for both was the same in the early stages and after a few more tests and X-rays I began my treatment.
All treatments take time to become effective and some take longer than others. I have been told my RA is particularly aggressive (I say this is good news as I must have a strong immune system! aka “The Culprit”). Joint pain and stiffness blighted me for quite a few years. I would regularly sit in the bathroom with my hands soaking in hot water as my first task of the day. Gradually my RA came under control with gold and I had decent periods of remission with some flares. Over the years gold became less effective and I then moved to Methotrexate, firstly in tablet form which began to cause stomach issues and then to subcutaneous injections that I gave myself. This pattern of medication giving relief but gradually becoming less effective has continued over the years and I have graduated up the scale to being on my second biological.
I still remember when I was running my own village pub and as I returned from having my weekly injection, administered into the large muscle in my rear end, I walked in to find my large-screen TV displaying the latest exchange rates as my good friend Trevor and several others worked out my drug usage and what I would be worth if I were melted down! It’s good to know who your friends are. Well…sometimes.
It was this that led me to be inspired by Ian Fleming and call myself “The Man with the Golden Bum.”
Learning what I could do for myself
Initially my natural reaction to any adversity was to plow on, overcome and push through the handicaps as best I could. I have always been inquisitive and eager to learn. I began to realise this “carry on regardless” attitude was actually counterproductive for me, especially as I needed to manage my business and couldn’t really go missing to recover if it could be avoided. My RA clinic gave me a chance to join in with one of their sessions to help patients cope. This included advice on managing the disease, using aids and equipment and some general tips from other patients, RA specialist nurses, Occupational Therapists and Physiotherapists.
Amongst the many topics briefly covered was one principal that was blindingly obvious to me once I knew of it but something I had not been doing: the practice of joint protection. This included being conscious of the loads, stress and impact of everything you do, changing the way you do things, using anything that can help protect your joints. In my case I always noticed old injuries were often the first place I felt a flare and new strains could trigger one.
Some initial adjustments…
A very basic example for me of a situation we all encounter is carrying shopping bags. Like nearly everyone, I was carrying them with my hands holding the loops. Clearly this puts a lot of weight through the fingers and wrists but slide your hand through the loop and move the bag on to your forearm and it is so much easier! The weight has now moved to the longer levers and stronger muscles of your arms and shoulder. The same approach to exercise moved me away from jogging to walking and cycling as a way to reduce impact shocks to my ankles and knees.
One of the tips I was introduced to then was the value of keeping some kind of journal, allowing you to identify any links between your disease and possible triggers. Through tracking like this, I have discovered some foods that triggers my symptoms and have been able to correlate activities with fatigue and pain (and have identified some other side effects!).
Apps like My Arthritis help me to keep track of things and can act as a digital journal – one that you have with you no matter where you are. Having content accessible at all times, like the Lifestyle & Wellbeing courses in the app, is great. You always have information with you that can help you in your day-to-day life (and we all usually have our phones with us anyways). The app has really helped me in my journey with RA so far.
This leads me on to how I live with RA and manage my symptoms…and there is a lot that I want to share.
Watch out next month for part 2 of my story to hear about the practical adaptations I have made, how I protect my wellbeing and what I wish I had known then (that thankfully, I know now!)
Be the expert in you, with a little help
As Clive mentions, you are the expert in you. Using the My Arthritis app allows you to record how your condition is faring, how you feel about it and create a log of your experience – which can then be used to help improve your management plan. You can also get tips to help you deal with flare-ups.