Clive’s Journey with RA: the Good, the Bad, the Funny (Part 2)

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Clive returns to tell us about how he self-manages his symptoms of Rheumatoid Arthritis through journaling, diet and supportive tools. He also shares with us some tips on practical adaptations he has made, how he protects his mental health and wellbeing and what he wishes everyone living with RA could know.

Journaling to Learn about RA

I want to make it clear – I am not a diarist in any shape or form. Sometimes I wish I was and that I had kept a diary in the past, particularly when I am trying to recall dates and when things happened in my life. This gets harder with age, because we have done more and have more to remember. I’ve done it all, from physical and digital calendars, simple charts and even making mental notes.

This habit of recording, checking and repeating is, I guess, like the scientific method of experimenting, and has helped me discover how my RA reacts to different things, such as strawberries and raw tomatoes. These days my reaction to food is a lot quicker than it used to be, sometimes as quick as 20 minutes.

Diet and RA

Now, I am sure many people have seen recommendations for various diets to help control their RA. My mother used to take cider vinegar and honey to help control her symptoms, but that never did work for me.

Prior to lockdown measures and Covid-19 precautions, I was able to follow a varied diet sourced from a number of shops. Now I use one major supermarket for a once a week delivery for all my shopping. It has taken me a year of trial and error to find products from that one place that do not trigger a reaction from my RA. I have had to change my choices as I found I was reacting differently to foods from different suppliers – which makes it hard to keep favourites. 

This leads me to another benefit of keeping a record of things: discovering side effects! Some can be pretty obvious, but others may not be until you begin to see a pattern related to your medicines, the timing and frequency. Personally, doing this has recently enabled me to identify a pattern around my fatigue, which may lead to a change of medication in the future. 

Let’s talk: Joint Protection & Practical Adaptations When Living with RA

My interpretation of joint protection isn’t about being inactive. I have definitely found that when I keep my body moving, it helps with my joints. Flexibility and low-impact exercise works for me but it is also pretty important to reduce the load and strain. In my house, I have removed rugs and any tripping hazards, I’ve made clear walkways (no walking around coffee tables etc) and I have rails to hold in my shower. Thankfully, I don’t have to deal with stairs as I have moved into a flat and the building has handrails in the corridors and a lift.

Other changes I have made to adapt my environment to my RA include changing my bed to a higher one as that is easier to get in and out of bed and raising my settee and armchairs up for the same reason. Electricity sockets always seem to become blocked by furniture making it hard to keep safe by turning the power off, also it is greener to not have devices on standby. I solved this by fitting remotely controlled sockets. It is amazing what is available if you look for it!

Hands and RA: An Issue for Many

For me, my hands are a major problem, both my wrists and my fingers are damaged. RA tends to attack the smaller joints and I have had to learn to adapt so that I can protect them. So, what does this mean exactly? This means that I don’t cook with saucepans or anything heavy. I also only use very sharp knives as they are much safer for me, requiring far less effort and grip. If you’re struggling with your hands, there are a huge range of tools available now to help with this type of issue and I use a variety to help me open bottles, cans, ring pulls and screw tops.

More recently, I have been wearing fingerless gloves. I constantly have cold hands, my circulation is not how it should be due to my heart disease but I find keeping my hands warm helps reduce some pain and inflammation in my fingers. I have tried compression gloves, however my normal fingerless gloves are warmer and give me more relief but to be honest, I will try anything that may help and won’t make it any worse! 

Feet and RA: The Impact of Pain

Feet and toes are also a target for RA and it is really important to do all you can to make yourself comfortable and capable of walking and moving, even the simple change to wearing two pairs of socks helps! Good shoes properly fitted with cushioning insoles make a world of difference. I am fortunate to have had shoes made for me following a referral to the Orthotics Unit and these have helped enormously. They are made to fit my feet, reduce pressure on damaged joints and are deep enough to contain cushioning and corrective inserts. If you live with RA and your feet bother you, definitely ask your clinical team on what can be done to help you.

My Work with Medical Students

I often act as a subject for medical students at the Royal Derby Hospital and I am quite useful due to my toes showing examples of both hammer toe and claw toe. My toes also show students how the fatty pads under the foot (at the point where the toe starts) can become displaced. This can turn into something particularly painful as you can probably imagine! It makes you feel like you’re walking on small marbles. Exactly how debilitating this can be varies for me according to how active my RA is at the time and how much pain relief I take. It has become quite manageable now, especially with my orthotic insoles and shoes. 

When I used to have more pain in my feet and still when I am having a flare, I find soaking my feet in hot water amazingly soothing. Also massaging foot cream into my feet helps improve circulation and an extra plus is that massaging eases any pain in my hands. I try to look after my feet myself but I would recommend seeing a Chiropodist if you are struggling to do so. 

Protecting My Wellbeing & Mental Health

Personally, I am delighted mental health is so much more of an open subject in the modern age. It used to be a taboo subject and viewed as a character weakness or even madness and I often had to avoid the subject. Everyone’s wellbeing is affected by it but sadly there was very little empathy shown to sufferers unless someone had also had the experience themselves. Just remember, the more we talk about it, the more comprehension and understanding we will create for ourselves and others.

A Feeling of Loss for Your Past-Self

I want people to remember that everyone is affected by RA in a different way, and it’s important not to compare your experience to others. There is one common feeling that I have noticed amongst my friends with RA, which is a feeling of mourning for the things you used to be able to do. 

And it’s not something to feel bad about, RA changes what you can do and how you do it. The physical effect is much easier to see than the suffering of the mind, which is equal to it, if not, more important.

It is vital not to dwell on what you cannot do but to accept the changes your body has experienced and find what you can do. I say, only worry about the things that you have control over, if you can’t do anything about something – worrying is simply a waste of your energy and time. 

This doesn’t mean that I never struggle, I of course have tough times. However each day I do the best I can with what I have that day (well, mostly I do haha!) It really is like the cliche saying “one day at a time”. Never was this more apt than when my wife, Janet, died a couple of years ago. But this saying still does get me through life…one day at a time. 

What RA Has Taught Me: Acceptance

RA is not a sprint, it is a marathon made up of different achievements. If I am having a difficult time, I turn to the things that make me happier. My favourite music, open and green spaces, reading a book.

The keyword for me is acceptance. Acceptance of my limitations and acceptance of what I will not be able to achieve. This then allows me to celebrate every small or big thing that I can do.

The Digital Revolution

The incredible explosion of the digital world has had a huge impact on us as people and on how we see the world. It provides many opportunities to help ourselves, help others and to share

knowledge. The weight of knowledge available is staggering, both figuratively and literally. Anyone who remembers how heavy a volume of Encyclopaedia Britannica was will attest to that! 

This vast well of knowledge is a shortcut to learning the things it took me 30 years to learn. I am a particular fan of using apps. I check my blood pressure and record it on an app along with my pulse rate and oxygen saturation. I check my activity levels with an app that measures and records my steps and distance walked.

I use the My Arthritis app for everything RA-related. It is not just the ability to measure how I am and equally how I feel, the newsfeed is my go to for keeping informed about RA and the app also supports me with video courses that help me cope and learn to live with my condition. I can track how I have been over time and really improves the feedback about my RA that I can give to my Rheumatology clinicians. There is so much there that took me years to learn. Oh you lucky people!

Thank you!

I hope that you enjoyed hearing more about me and my story. Life with RA is about adapting, accepting and taking things one day at a time. It may not always be easy, but there are many tools and resources that can help you along in your journey – it may take some time for you to find what works best for you – but you will! 


 

Have questions? Please feel free to reach out to us at sarah@ampersandhealth.co.uk and we would be happy to chat!

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