Don’t disregard my pain

Melbourne author, cancer survivor and amputee Jessica Walton wants you to know the realities of living each day with chronic pain.

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Recently, I was reminded that some people assume my pain isn’t that bad. This is because of masking and medication. Before I take my meds, I usually can’t get out of bed to go to the toilet. My partner has to bring me food and drink so I can take my tablets. Once they’ve kicked in, I can start to move properly.

I can get myself to the toilet, and then the shower, on one leg. I can’t hop anymore, so I sort of shuffle my way there, holding on to things as I go to steady myself. I have a long, hot shower with two shower heads, one for my back and one for my legs. The hot water frees me up to move better. The shower has a built-in seat, as it hurts too much for me to stand on one leg for that long.

After the shower I get my prosthetic leg on. It’s hard for me to get it on, on bad pain days. If I’m hurting in the wrong spots it hurts to carry it with my body; to lift it and swing it, to walk. If it’s hurting to walk, I’ll try crutches instead.

Sometimes I’ll try my crutches and they hurt too much, too. It can be a choice between two pains: what hurts more, my sacroiliac joint and left glute/stump? Or my ribs/shoulders/neck?

Also, what am I doing? If it’s a big day a leg is necessary. A quietish day? Crutches are okay. Am I outside? On grass, gravel or potentially wet or slippery surfaces? No crutches.

Am I on sand or gymnastics mats or something similar? No leg, but the crutches aren’t great either.

Am I somewhere I can drive to? Crutches are okay, but I have to think about what I’m stepping out onto, and for how long. Am I taking public transport somewhere? The leg is better, but the vibrations I get on public transport might set off my phantom pain and spasms.

And so on, and so on. It’s a process of weighing everything up, and there’s not always a clear answer.

Sometimes it’s a matter of realising I can’t do either mobility aid and cancelling my plans. Or working out which thing in my calendar will help me pay my bills and feed my kids, and pushing through on that one while cancelling the rest so I can recover. Everything has a pain cost, and it’s hard to calculate.

It’s a process of weighing everything up, and there’s not always a clear answer.

Sometimes doing too much will land me in bed for a day, or longer. What do I have on in the days after I do something with a high pain cost? Will I have to parent, work, or get to another event? What if I do this thing, and then struggle to do those things that come after it?

If cancelling plans I have to also consider the effect on my mental health. Cancelling usually leads to depression and anxiety, particularly guilt-driven anxiety over missing friends’ events or repeatedly cancelling plans. Have I cancelled on that person too much lately? Are they the kind of person who gets how I am now? Do they understand, or judge? Is this someone I mask around a lot? Do I have the energy to mask today? There’s a cost to masking. It’s incredibly draining.

I’m not good at masking just a little bit. I mask 100% with most people. I mask so my partner is sometimes amazed at how changed I am from home state to work/social state. She knows the signs that my mask is cracking and I need to get out of there.

When I get home from something big, or if I’ve had a few busy days in a row, I start to spasm. These are short, sharp pains that feel like a hot whip going from my lower back down into my glute and leg. My whole body jerks. My stump jumps violently. It’s deeply unpleasant and distressing.

I used to only get them at night. Now I usually get them at the end of the day, when I stop masking and when my meds are starting to wear off. They’ve gotten bad enough to make me yelp or even scream. If I’ve been pushing myself for too long or too hard, sometimes I even get them during the day now. It’s hard for someone used to masking to accept yelping, screaming and spasming in front of other people. If this starts I know I need to get home ASAP and rest. It’s a bad sign.

If I ignore bad pain signs, my body forces me to listen in other ways. I’ll get tears randomly pouring down my face, or I’ll start vomiting, or I’ll just check out and not be able to converse or function properly. I am learning not to let myself get to this stage.

 

Problems getting to sleep used to be a good sign that I had pushed myself way too far too, but now I have night-time meds that really help with that. They help my sleep in two ways – they make me drowsy, which helps me get to sleep, and they reduce my spasms, which helps me stay asleep. I sleep so deeply now, my kids played with the vacuum cleaner in my bedroom this morning and I didn’t wake up!

And every day, in the background like static noise, on top of any other pain, I’ve got chronic phantom pain. My body thinks my leg—that was amputated 24 years ago—is still right there.

It’s a tingling, tickling kind of pain, but that doesn’t really describe it. I’ve tried writing poetry about it to help me find the words to describe this pain, and the metaphor I keep coming back to is bees. These metaphorical bees buzz and move around inside my stump, and in the phantom limb beyond it. They’re always busy, and they’re sometimes angry.

It flares up more when I think about it or talk about it. It’s flaring up right now, as I write this. It also flares up when I see violent scenes on TV, or roadkill when I’m driving. It flares up if someone shows me an injury. It flares up when I watch, read or write something about amputation.

When it flares up really badly, it’s like the bees are swarming, making me itch painfully from the inside out, angrily trying to get out through my skin. It’s unbearable. I have to hold my stump and push down hard on parts of it. If my prosthetic leg is on, I can’t push down on my stump.

In recent years, my phantom pain has started changing and interacting with my other pain. My spasms continue into my phantom limb now. My aching lower back buzzes and the phantom pain buzzes along with it. My pain takes a lot of my energy, my time, my thoughts.

Yes I’m an amputee, but I also have chronic pain. These are linked, because my pain is caused by my disability, prolonged use of mobility aids, and repeated falls and injuries. But my chronic pain is a whole disability all on its own too. It deserves the same respect and weight.

I have two physical disabilities: I’m a patient at a pain clinic and an amputee clinic.

I use mobility aids for pain and for my leg. I have weekly (sometimes twice weekly) treatment with an osteopath to manage. I take a range of medications to manage. I rest—and cancel—a lot to manage.

My chronic pain is a whole disability all on its own too. It deserves the same respect and weight.

And soon, I’ll have a power wheelchair to help me manage. It’ll give me one more option to consider in the mornings when I’m sore. I’m sure it’ll cause its own kind of pains and problems, just like the leg and the crutches. It’ll be helpful for some situations and not for others. It’s not going to fix my pain. It’s not going to mean I stop needing to rest and recover and cancel sometimes.

My two physical disabilities are permanent, and I want everyone in my life to understand that.

Pain fluctuates but I don’t expect to ever be ‘cured’ of chronic pain.

Please don’t only believe I’m in pain when you can see evidence of it. Please don’t think I’m not in pain if I’m smiling and laughing and socialising.

I am always in pain. Whether I’m in bed resting or hanging out with you (masking and on painkillers), the pain is there.