Living with chronic pain

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There’s no easy way to ease into a blog post about chronic pain, so instead of trying to do that, let’s just begin.

Chronic pain is awful. It affects people for all different reasons and it can vary from mild to severe, it can come in waves, be constant, flare up, be related to a known condition or happen for seemingly no reason at all. I have it and I am largely unimpressed and annoyed by it, but I have grown to be used to it.

I suffer with it related to a suspected connective tissue disorder- Ehlers Danlos syndrome. There’s no genetic test, so I can’t be sure, and I’m no longer ill enough for doctors to see me in regular clinics or monitor me. There aren’t enough specialists for that sort of attention, and that’s a frustrating part of having rare conditions, as any fellow sufferers will know.

Chronic pain doesn’t have to come from a rare condition though, it comes from lots that we are aware of like arthritis and endometriosis. You probably know of someone who puts up with chronic pain, but like many people who know me, you most likely aren’t aware. In a lot of cases, the pain becomes a part of life. It’s one of those things that happens, usually daily, and there’s nothing much to be done about it.

Whether you’re sitting at your desk at work, trying to get to sleep, driving a car, in the shower, dancing on a night out, the pain sneaks in and takes over. I’ve learned to carry on and ignore mine unless it’s severe and that isn’t an option, because it’s easier than trying to explain to someone that a body part hurts out of nowhere and you need a break. Or you need to go home. Or you need to sit down on the floor.

People don’t get it. They can’t relate to it if they have never felt it and that’s reasonable. You can’t truly communicate how it feels to be in pain everyday, or get across the chaotic fashion in which your body treats you. One moment, you’re laughing away or getting your head down with some work, the next your staring really hard at the floor waiting for this latest pang to pass.

sometimes it doesn’t pass. Sometimes the only thing you can do to cope is to retreat to a bed or sofa and reach of the painkillers. sometimes it doesn’t pass for days. Chronic flare ups are NOT a fun time. It can be lonely and quite isolating too, to put up with something that in many ways defines your day to day life, but that you keep mostly to yourself or the confines of a select few in case people think you’re making it up, exaggerating or just being a baby.

Aside from the negatives and the physical impact and the fact it can quite literally get in the way of living at times, anyone who deals with pain on the chronic scale is brave beyond measure and you’re not alone. It’s easy to feel alone, as you might not know anyone else who suffers with something similar, you might have very few people or no one at all that sympathises with you and makes exceptions, but there are others out there.

The online community for ‘spoonies’ is quite something. I highly suggest getting on twitter or joining Facebook groups if you feel you need to connect with other people like you. You might have seen this term flung around recently in relation to Selena Gomez, who recently made it public that she has lupus. The ‘spoon theory’ is essentially that every person has a certain amount of spoons per day and different activities take up different amounts. Once you run out, that’s it. You’re done. You are absolutely done. I used to run out of spoons completely on a regular basis but thankfully I’m going through a long, good period with my condition.

If you have chronic pain I feel for you immensely, and I hope you know you aren’t the only one dealing with this unwieldy, random, debilitating symptom. KEEP GOING. YOU CAN DO IT.

2 thoughts on “Living with chronic pain

  1. Hi, I have read a few of your posts on Ehlers Danlos and have found them really interesting, I was diagnosed last year but no Doctor seems to know much about it. I would love if you knew of any specific websites that you have found helpful. Thanks xxx

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    • Hi Kate, which type were you disganosed with? I’ve had quite a lot of contact with the EDS charity who can provide a lot of info and have great discussion forums: http://www.ehlers-danlos.org/ Do you ever use Twitter for searching? There is a great community on there for chronic illness and especially EDS. I can refer you to a few accounts/people if you want. In terms of docs, UCL in London is excellent. I also saw a geneticist at Chelsea and Westminster hospital xx

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