What’s it like living with a chronic pain condition?

First of all, I’d like to say that I wish that I didn’t have a personal perspective on this topic. But, unfortunately myself and 2 in 5 other Brits (*.Gov website 12/12/2021) are living with chronic pain conditions. With figures rising all the time due to the residual effects of long Covid.

What does it really mean to each individual bound up in that statistic? Everyone is different, and there is a plethora of ways that the body can go on the fritz. So, over generalising can be counter productive. Reducing the ability to give targeted care and specific treatments. Treating symptoms as opposed to root causes.

The actual description of a chronic pain condition is that the sufferer must have some kind of pain that lasts longer than 3 months. In my case, over the course of several years, my pain manifested first as insanely painful periods. Until eventually the times when I was in overwhelming pain began to heavily outweigh the times when I was OK.

I was 26 or 27 when it became insurmountable, and I became practically housebound for nearly two years. At first asking for help from Dr’s resulted in me being advised to have a baby as that might help to settle my cycle! I had always wanted to be a mam so we started IVF after I had been checked for endometriosis. The lap and dye test showed I had a beautiful uterus (Dr’s words) and no visible endometriosis.

It took months to recover from the Lap and Dye. It’s a small key hole procedure but they inflate your body. You can feel the air trying to escape through your shoulders. It hurt a lot. The first round of hormone injections seemed to make me unwell too. My brain was becoming exhausted as well. A dark depression descended. How could I be a mam when I couldn’t stand for more than 10 minutes without flop sweating from pain? How can you take care of a child when you can barely take care of yourself?

We stopped IVF and asked for help again. I explained my worries and I said to the Dr that I suspected fibromyalgia was the cause. The Dr doesn’t think fibromyalgia is a real thing, he medicated me anyway and sent me off to deal with it. After quite a few months my body settled onto the painkillers and anti depressants. I got some quality of life back.

But I was still really unwell. For the most part the drugs really helped. I stopped crying as much and I was allowing myself to consider the future again, instead of just surviving day to day.

I’m 36 now. No babies. Probably never will. I’ve been taking sertraline, amitriptyline, codeine, paracetamol and ibuprofen every day for years now. I take my contraceptive pill back to back for as long as my body will allow. Painful periods are still definitely a thing, but I might only have a couple a year instead of one a month.

I feel like this is the most control I can expect to have over the condition. I should be grateful that I’m not housebound, and just try to crack on. But a flare up is never far away. Even though I try to be careful not to over do it, the goal posts are constantly changing. What was fine to physically do one day, might be just too much the next.

The pain is there anyway so my current mode of thought, for as long as I can sustain it, is:

Just do it anyway if you can. The pain is there whether you did or didn’t, so just do. Or else life will pass you by.

It’s frustrating. This isn’t the life I would’ve chosen, (obviously because then I would be a sadist!)

But it’s what I have to work with. Lots of things I enjoyed in the past I either can’t do now, or if I do them then I have to plan in rest days. I loved being active. I’m fearless and game for pretty much anything. Or, at least I used to be like that. Now just call me nana-stick-in-the-mud.

Do you want to go camping? Yes, would love too, but sleeping on the floor will ruin me for days.

Fancy learning to snowboard with me? Wow! That sounds great but the cold and the exertion will leave me bed bound.

Let’s go on holiday! Sounds friggin mint but I’ll need a couple of down days after travelling.

So much becomes that much harder to manage. Getting angry and upset doesn’t help, it just makes you harder to live with.

Anywho, I’m writing this because I think that the way I present myself on social media can give the impression that I’m always working and never dealing with anything. That’s just spin.

Also who really wants to know about suffering? I’m sure we all have enough of our own to deal with! Below I’ve tried to list what happens to me in a flare. Some symptoms I have everyday, but I consider a flare to be me experiencing all of the listed symptoms in a period of days. A flare will usually include a lot of brain fog. If you’ve never had brain fog then it’s quite hard to imagine, and I find it one of the most scary symptoms. It’s when I feel the most lost, if I could fire enough neurons to feel anything other than the pain.

Flare

1. Writing about pain when in pain is hard.
2. Ambient buzzing pain all over body
3. Rising to overwhelming burning deep tissue and bone pain
4. Rising detached mode of thought as doing tasks becomes harder
5. Concentration near impossible brain fog moves in
6. Breathing laboured plus breath holding due to pain
7. Pain sits heavy in legs, chest, jaw, arms, neck and back
8. Flop sweating due to pain
9. Exhaustion beyond capacity
10. Voice changes
11. Sore throat
12. Pain that no rest or drugs relieve
13. No restful sleep
14. Always too cold or too hot
15. Dizziness
16. Headaches
17. Nausea
18. Oversensitive to some stimuli sounds, motion, light
19. Clumsiness
20. Irritable
21. Confused
22. Depressed
23. Numbness in hands and feet
24. Muscle cramps
25. Shakes
26. Sensitive to weather
27. Embarrassed and ashamed of flares
28. Extreme cold in hands, feet and nose
29. Wipe out
30. Social isolation due to repeated flares, job loss, relationship strain
31. Inability to judge limits as they change constantly
32. Eyesight changes – blurred vision and slow focusing
33. Sausage fingers – can’t type or do dexterous tasks
34. Difficulties standing, eating, drinking, swallowing
35. Hopelessness
36. Flu symptoms including awful sinus pressure and uncontrollable sneezing which leads to more pain in my chest because of the exertion of sneezing!

Let’s end on a friggin positive. I feel crap today, but I have managed to write fairly coherently! I have a good brain when it does work! I know there are lots of people struggling in similar ways, and I think we need to give ourselves a break. Love yourself, even more so if you are dropping to bits.

Here’s to 2022 being awesome. 🤩 If you want to support me as an artist you can do that via Patreon:

https://www.patreon.com/MaverickartJo

For the price of a coffee per month you can give me a little breathing space so I can create art instead of working face-to-face. Much thanks! And all the love x