Hands have other plans

Updated: Sep 26


What do you think of when someone says bad hands? Or, more specifically, arthritic hands? The majority of the time, the mention of arthritis makes one think of the elderly, and only someone with a demanding, manual job could be affected by problems with their hands – right? Wrong…

Who knew hands could impact you this much? I certainly didn’t! They may be small, but they are oh so significant! As a young person living with RA, I want to be sure to do all I can to keep my hands healthy and in good condition, which means accepting help where I need it and investing in equipment that helps take the pressure off. You know I love my big chunky pen, but I also really value my strapped wrist weights, specialised keyboard and mouse and specialised tin opener. I don’t need to use them all the time, but I’m glad to have them for when I do! (check out the ACCESSORIES page for links to some of these products).


When I was 13, I got Glandular Fever and was prescribed the wrong medication. I ballooned up and has a rash all over. My Mum had to cut my food up and I could just about use a handled spoon to feed myself. This was my first experience of struggling to use my hands, but at least I knew there would be an end to that! So, as you can imagine, it was a scare when it happened again during a flare-up following my RA diagnosis at 20. Good old Chaela (my Mum) was there to cut my food up again, and then the baton was passed to Dan when I stayed at his.


So, what do I do? How to continue as normal?


Well… the smart way is to acknowledge things actually won’t carry on as normal. I find improvising, overcoming and adapting to a new sense of normal is the best way forward.

When my hands first flared up again, my friend (and sports therapist) Gemma recommended I try wearing hand splints on a night. I think she even got them for me – such a star! They helped so much! My problem was that throughout the night my hands tended to scrunch/curl, so come the morning they were stuck in that painful position. When I first started my Master’s, as I was on my laptop and writing a lot more than I was used to, I sometimes wore the splints through the day as well. They worked a treat; I wasn’t waking up in agony anymore every morning and needing a hand massage from Dan (which then started to hurt his hands!)


After a good few months of wearing the splints and going to the gym again, my hands felt better. I got to a point where they actually felt better when I didn’t wear, so I gave them a rest. Maybe I was wearing them too much or my hand shape altered – I don’t know. I accidentally left them at my Mum’s house so I didn’t have them for a few nights and my hands felt so much better… still not ‘normal’ though. That’s when I started to look into things like the chunky pens, wax pellets, wrist weights and the laptop equipment from Uni.


When I was at the gym I really struggled. I was given a generic programme when I joined @RokoHealthClub_York and everything that involved hands; dumbbells, lat-pulldown machine, chest press machine, shoulder press machine, the rower, cable pulley station, etc. I found it hurt so much and the pain carried on for the following 3 or 4 days. So, I asked the people at the gym to help me modify the exercises and they were very helpful. They did what they could to make the exercises a little gentler on my hands, but unfortunately, I still experienced pain for a few days after workouts.


I think the most frustrating thing, and the hardest thing for me to accept was that I felt as if these silly hands were getting in my way of me building muscle through the rest of my body. They weren’t swollen (especially not on the days I went to the rheumatology clinic about them or had scans on them – typical!) so the doctors couldn’t find a specific problem with them. They just seemed like healthy working hands.


I don’t know whether they’re starting to improve, or I’ve got used to the pain, but the constant ache feels normal to me now. That being said, when the pain is more severe, it can totally flatten you. Especially in the morning! In my experience, it can be so exhausting it prevents me from getting up. Something I still can’t wrap my head around is quite how can hands have the power to do that?

- Please tell me if any of you feel this, or is it just me?!

POWERING ON THROUGH…

A hot, relaxing bath (or just a hot shower), a couple of ibuprofen, hot wax and hand massages all help me. The biggest thing though – distraction. It’s mind over matter!

When my hands first started to really bother me, I was constantly thinking about them, messing with them, trying to stretch them and massage them myself – this was all too much and made them so much worse. I’ve since acknowledged this and use things to overcome the pain, rather than let myself fill my head with it. Placebo effect? Or again, have I just got used to the pain?

Either way, I am better off and I would do it again if I had to.

I worry that my hands have changed so much in the last couple of years. To me, they look completely different. No one else can tell, so that puts me at ease. Honestly, some days I look at my hands and see the hands of a 90-year-old; withered, wrinkly, nobbily. Are those my hands? What has happened? When I find myself going down that path, I try to keep it light and instead think of episode from ‘Friends’, when Joey sings “This hand is your hand, this hand is my hand, oh wait that’s your hand, no wait that’s my hand.” I think my hand-twin would be that of a 90-100-year-old, shaking when holding something and struggling with the inability to grip.

However, I have plenty to be grateful for - they still work and they are still there, so I am happy with that!


As always, I’d love to hear from you guys about your experiences of living with RA; the good moments and the bad, what holds you back and what gets you through. Share your stories and advice with our community today, using the tag #handsdowntheworst.

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