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My friend came up with a really good idea of seeing what it is like to live with someone else’s pain – so that’s exactly what we did. We called it Spoonie Swap and spent the day doing the things that each other did to cope with their chronic pain.
I’ve recently learnt that using the spoon theory is not always best when you have chronic pain as no two days are the same so your energy levels will be different. But for the purposes of this challenge and appropriate alliteration, I’ve left it as Spoonie Swap as this will make sense to a lot of my readers.
Now, of course, we didn’t actually have the other person’s pain. The point of this challenge, experiment, research, whatever you want to call it, was to understand how the other person coped and to see what it was like having to think about and do all the different things to manage that pain. It was to give us a different perspective on how other people cope, and to realise everything we do as individuals to cope with our own pain.
We began by typing up everything about our pains – what it is, when we are in pain, what we do to manage that pain. This was so we had a pretty good idea of what we needed to do to take part in the challenge.
Bearing in mind this was all on top of everything we are already dealing with, so we made sure we did the challenge on a sensible day and not when we had bad flare-ups with our own pain.
We asked each other lots of questions to fully understand what it was we needed to do, and even on the day we did the spoonie swap, we fired questions at each other as different things or situations cropped up.
Alice lives with TMD for the day
My friend, Karen, has Temporomandibular disorder, also known as TMD. This is a condition that affects the jaw and ear, and it is painful and difficult to open your mouth. It very often causes pain in other areas of the face, including headaches. The pain is often worse when eating, yawning, talking and when there’s any kind of pressure on the face.
Alice’s spoonie swap observations
How did you feel about doing this challenge?
I had mixed feelings about doing the spoonie swap. I was quite excited about it as we had talked before doing it and agreed it would be a good exercise for us both to do. But I was also a little worried about how managing the TMD pain would impact on how I manage my own chronic pain. There was going to be a lot more energy and thinking time spent on the how of my day and this concerned me.
How did you prepare?
I learned from Karen what causes her pain and how she copes with it – the things she does and doesn’t do to help herself. I also knew what types of food I was going to eat based on what Karen eats, so I bought these things so I had them in ready.
On the day I wanted to make sure that I wouldn’t forget about this pain and challenge, so I decided to stick some physio tape to my face where Karen says she experiences the pain. She also said the pain radiates across her face and up her head, but this was enough as a gentle reminder that I was coping with the pain for the day. I stuck the tape on both sides.
What different pain management methods did you have to do?
It was completely different to my own pain management methods, so it was a real eye opener in terms of thinking about other people’s pain. I had to think about how I ate, what I ate, how I used my phone and headphones, pressures on my face from lying down, hugging my partner, and doing things differently like yawning and brushing my teeth. I never think about these things with my own pain management, so adding all this in to the mix was a real challenge
How did you find it mentally?
I think the main thing for me was how it impacted on my eating and my closeness with my partner. I often turn to food for comfort or a reward, so not being able to eat my usual food options really made me feel quite low. I also hug my partner quite a lot throughout the day, but I really had to think where the pressure was during that hug and whether this would cause more pain.
In terms of the challenge itself, I found it really positive – I learned a lot and putting myself in someone else’s shoes and how they manage and cope with their pain was a good lesson for me.
In terms of the additional pain management and things to consider, it was quite draining. It kind of took me back to the early days of my own pain and constantly thinking about what I need to do, how to do it, and how it would make me feel.
How did you find it physically?
This is hard to gauge because I didn’t actually have the pain, but the physical challenges were thinking about how I’d manage this pain on top of my own pain. Lying down was the tough one, as this is something I have to do a lot. How would I have coped lying on my side if my jaw was in pain too?
I couldn’t use as much pressure like I normally do when washing my face, and I also used the sensitive setting my on electric toothbrush. I also found it really hard to chew my food slowly and properly. I realised how little I chew my food before swallowing it.
What did it make you fearful of?
I always worry what if I get some other health condition or pain the I have to deal with. This made me think a lot more about how awful it would be and what I’d have to change to cope with it. Even now, a cold or some other pain or issue on top of my current pains is hard to deal with, but they are temporary. Having TMD or another permanent chronic pain would probably tip me over the edge.
What weren’t you able to do?
I couldn’t eat some of my favourite foods; they were literally off the menu. Things like Crunchy Nut cornflakes, fruit, crusty bread to go with my soup. The only way I could’ve had them was to soak them thoroughly to let them dissolve in my mouth which I wouldn’t have enjoyed.
Instead I soaked some bread in my tomato soup, I sucked on a piece of fudge, had some shepherd’s pie for my dinner, and then sucked on some chocolate for pudding. Not all bad I must say, but it really made me think abut what I could and couldn’t eat, and if I didn’t have some suitable foods in at the time, then going out to get something would’ve been something else to do whilst being in so much pain.
I couldn’t listen to my podcast on my walk like I normally do. Karen said when her pain is bad she can’t use in-ear or over-head headphones as it is too painful. I love productive walks when I listen to a podcast and learn something new, so this was quite disappointing and frustrating.
What was the hardest thing about this challenge?
Having to think about all the different pain management methods to manage everything. It was tough, and like with my own pain now, I avoid one pain but cause another.
I actually spent quite a lot of the day on my own, but I imagine that if my partner was in and I was coping with TMD, then talking would’ve been painful.
I also would’ve really struggled with the medication side of things. Obviously I didn’t take anything for the purpose of this research, but Karen says all her meds really affect her and cause side effects on top of her pain. Something that I really struggle to cope with.
What good or positive things did you see or feel?
I actually saw a lot of positives. I appreciated the taste of my food as I couldn’t chew it and swallow it like I normally do. I also appreciated the sounds on my morning walk as I couldn’t use my headphones. I heard church bells in the distance, which took me back to my childhood and bike rides to my village green; I heard car engines revving on driveways (it’s probably much safer not wearing headphones); and a chap started talking to me outside Aldi – had I got my headphones in I wouldn’t have heard him at all.
I was also extremely grateful that this TMD pain didn’t affect my walking. Maybe if the pain was so bad I could imagine that going for a walk may be the last thing you want to do – sometimes like how I am on my bad pain days – but I always enjoy my walks and never regret going for even a 5 minute walk around the block and for some fresh air.
Would I really see all these positives if I was in additional pain? Probably not. But over time I’d like to think that I would as I’ve learned to change my mindset as best I can.
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What surprised you the most about doing this challenge?
I think what surprised me the most was how my mindset these days is all about pain management. It has to be my priority as I very often have to plan and think ahead about how I will manage my pain. After living with daily chronic pain for nearly 8 years, then it’s bound to come quite natural to me, but I hadn’t really thought about it in this way before.
It was exhausting thinking about it all, but actually making sure I was thinking about it wasn’t challenging – the thoughts naturally appear – but it was challenging making sure I was doing the right pain management. I hope this makes sense?!
I doubt very much that I did everything right, nor did I fully appreciate everything that people with TMD have to cope with. You never ever really fully understand someone else’s pain unless you’re in their shoes. And although I didn’t have the TMD pain, I got a better understanding of the daily challenges that Karen faces. Things that I take for granted, or do so naturally that the thought never even crosses my mind.
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