Self care with friends who inspire me: Part 4 – Opening jars, coping with pain and talking about arthritis

I first met Jen in 2003 when we walked Pilgrim Cross together. Pilgrim Cross (formerly called Student Cross) is a walking pilgrimage to Walsingham during Holy Week where different groups (known as ‘legs’) walk from different places carrying a large wooden cross and arrive in Walsingham on Good Friday to celebrate Easter weekend together. Jen and I walked London Leg together walking 120 miles from Epping to Walsingham over seven days. We were paired up as ‘prayer partners’ and by the end of the week, we had become firm friends – having shared the many hardships and joys of pilgrimage together.

Picture made by Jen

One of the most thoughtful and lovely gifts I have ever received was this picture which Jen made me after I had chosen ‘hope‘ as my word for the year. Jen and her husband John also sponsored me for my Creative Writing Challenge and were responsible for Cookie-monster appearing in my story.

Jen is a super smart engineer and an OBE no less, however she is also so completely down to earth. She somehow finds the time and energy to maintain lots of close friendships and I am blessed to be one of her many friends. She was also diagnosed with rheumatoid arthritis at the age of 33…

“You’ve got rheumatoid arthritis”

Jen was in America at the time of her diagnosis and it was a particularly difficult time as she wasn’t familiar with the American health care system. Her GP gave her the diagnosis and handed her the number of the specialist and suggest she ring them. She explains how she sat there in complete shock having had this bombshell dropped on her thinking ‘You’ve just told me I have this long term condition and all you’re doing is telling me to ring this number.’ When she asked if there was any information she could have, the answer was “I can photocopy my medical text book for you if you’d like and she did!”

“So thank goodness for the UK arthritis charity Versus Arthritis because I went online and found all their leaflets which were really helpful.”

“As arthritis diagnoses go, it could have been a lot worse. The joints it really affected were my wrists, hands and feet and the worst thing was the feeling of someone hammering knitting needles on my wrists. It was extremely painful. I was teaching at the time and spending all day on my feet. I would get home to the house I was sharing with the other people on the same volunteering programme and I would basically lie on the bed and cry. I was fortunate that my housemates were all really supportive and lovely.”

Medication

“Luckily, it got better from there. As it turns out, if you are going to be diagnosed with a long term condition, and you are in the US with good medical insurance, that’s the right place to be, as you move through the stages of medication quite quickly.”

“So to get onto the medication I am on now, you have to have tried two or three other medications first. I tried the first type of medication – Methotrexate which helped a bit, but then the pain would come back worse. So then he put me on something else that didn’t work and then I was eligible to go onto the medication which actually worked for me – which I am still on now.”

“Some people find that steroids do the trick – but they didn’t work for me. I was put on the injectable anti-TNF drugs and it was like someone had waved a magic wand! Prior to that, I hadn’t been able to open any kind of jar even if the lid had been loosened. I couldn’t pick up a kettle. My hands just didn’t really work. If I needed to carry a bag around school I had to get the kids to carry it for me.”

“Within two weeks of starting this medication, I found myself opening a previously unopened jar and I was saying to myself ‘Hang on Jennifer, you can’t do this, what are you doing?’ Then I realised that the drugs were working. I was so lucky.”

Coping with pain

“I’ve had a couple of relapses over the years where it’s got bad again and steroids have helped. The thing I found hardest was I am not really good at coping with pain – especially long term pain. When the pain won’t go away, I just find it quite depressing. I get quite tearful and I find it very hard to put myself outside of that.”

A helping hand… Getting support from others

Helping hands

“The way I deal with my condition is to tell people about it because most people are hugely supportive, and generally sympathetic and empathetic and will help you out. One day at work, I couldn’t open my lip salve and I went to see my colleague and asked if he could open it. It wasn’t in any way tight, it was just that I had no grip strength. He looked at me somewhat surprised and said ‘Really?’ and so I explained I have no grip strength. Of course he didn’t mind opening it. And so after that, he knew that this was a problem for me, so he would always step in to help me out with such tasks.”

“My mother-in-law and a fairly close friend have much worse arthritis than me and they have severe joint damage. In my case, because I started the right medication quite early it limited the joint damage – whereas my mother-in-law and my friend are in a lot of pain due to the joint damage. I really don’t know how they cope with that and how they stay so cheerful. My mother-in-law is hilarious – we have a lot of laughs together and I just admire her so much. The drugs I’m on didn’t work for her. She has suffered with this for 40 odd years now and she still gets up every morning. I’m not sure I would be able to do it.”

“Tell your friends and family and let them support you. It might be that some people don’t know how to support you and if that’s the case, tell them. Most people at the very least, don’t want to be unsupportive. The vast majority of people are really helpful and supportive. I find for me, that is the biggest help.”

Curbing my enthusiasm

“One of the things I have to guard against a bit is overdoing it. I have been described as ‘afflicted with enthusiasm’. Partly because I am really enthusiastic about things, so if I think something needs to happen, and if no one else is doing it, I will just get on with it, I don’t even think about if it is going to cause me any pain. And then later I get to the point where I am really struggling. So, knowing when to step back is one thing. It’s about getting the right balance. “

Getting the right balance

Jen went on to add: “Talking to others so that they can support me is the main thing for me. Because for me, that support from friends like you is really important, so thank you.”

It works both ways, I can assure you. Thanks so much for all your support and friendship over the last 18 years Jen and for supporting me by sharing your experiences in this blog. You’re a star!

For more information about arthritis visit https://www.versusarthritis.org/

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