Religious followers of this blog will know that I’ve experienced chronic pain in my sciatic area for the last five years. I noticed it after a particularly nasty fall in the back garden in 2020 but only became concerned when, six months after the fall, the pain hadn’t subsided. Since then, it’s been a rollercoaster of medical appointments, of being told it was sciatica, muscle spasms, periformis syndrome and many other things. And, of course, one medic had the gall to suggest I was imagining it, that it couldn’t possibly be as bad as I was saying (apparently, I like lying in bed every night, doing stretches at half three in the morning for the craic.)
My birthday was in April, and to celebrate I was gifted an unexpected diagnosis. After years of plaguing her, my doctor, who believed me from day one, ordered a hip x-ray. Now, I wasn’t expecting anything to come of it, but three days later, she phoned me to say that there was significant wear and tear in my right hip, and that the results could pinpoint exactly what’s causing the pain. At first, I was stunned, and a little annoyed with myself. Had I done this to myself? Since then, I’ve spoken to so many people who have arthritis too, and the majority of them struggle to articulate just how debilitating this pain can be.
Having Cerebral Palsy is not a big deal, because I’ve never not had it. However, as I get older, I find that I have aches and niggles I’ve never had before. Adapting to having CP comes naturally, as there’s never been a time when I didn’t have it, but chronic pain, although it’s kind of connected to the CP, has been a bit more of a learning curve. Here’s what I’ve learned about having this new CP (although a Google search told me some of the same things, I’m more into learning the hard way).
- Chronic Pain is not your fault:
Admittedly, I naturally walk with my leg turned in, but despite appearances, I do try to walk as straight as I can. It took me a long time to acknowledge and recognise that chronic pain is not a punishment, and that being hard on myself was not going to change it. Sometimes you can do everything right and still end up in pain. This leads me to my second point… - Physical pain can lead to crappy mental health:
Being in pain is exhausting. I’ve finally succumbed to taking pain medication at night so that I can sleep, but on days where I’m in pain and tired from a poor night’s sleep, the world becomes a dark place. Even the simplest tasks become laborious and time-consuming. Your brain lies to you, telling you that you are useless, a burden. This can lead to feelings of failure and inadequacy. Therefore – - Pain management must come first in your priorities:
It doesn’t matter how busy you think you are. If you skip the physio, neglect to slap on the TENS machine or push through without the medication, chances are you won’t be able to do what you need to do anyway. In order to be your best self, you need to take control over your pain management. Eat well, drink your water, and rest when you need to. - Pacing is not a dirty word:
I continually fight this one. After all, we live in a society where “being busy” is seen as a badge of honour. I tend to get overexcited when I have a pain-free day, and I run around the house like a lunatic, scrubbing bathrooms and hoovering only to be left in agony for days after. I think what you’re supposed to do is prioritise tasks and do them at your own pace, with plenty of rest in between. I’ll keep working on it! - Pain can be lonely:
Most of us don’t want to be seen to constantly complain. As a result, I often find myself withdrawing from activities and meetings that I once enjoyed. I don’t like telling the same story, over and over. Sometimes, I don’t have the energy to be social, and I end up watching Netflix in binges when I could be meeting people out of the house, and this only heightens my inner shame and sense of failure. However, it’s also important to remember – - You are not alone:
When I eventually found the courage to talk about the impact that being in pain was having on my physical and mental health, I was surprised to hear that so many of my friends were also wrestling with pain, and as long as I don’t fall into a pit of self-pity, I can support and be supported by those who love me most. Many people experience chronic pain, with diagnoses like fibromyalgia. Sometimes people are not believed, but this experience does not make your pain any less real. Thousands of people are in the same boat – take some comfort in this. - A bad day does not mean a bad life:
I’m having a bad day today; I cannot shake the tiredness and this is slowing me down. It’s frustrating, especially since, in my mind at least, I have nothing to be tired about; no job to go to (hoping that will change soon), no toddlers, and not nearly as much writing being done as I’d like. However, I must admit that I have good days too, especially those spent with family and friends, and that overall, I’ve achieved a lot. Parenting a teenager is not for the faint hearted! - Wheelchairs and walking aids have no moral value:
Over the years, I’ve heard people saying that they want to be able to walk without aids. My thing is that I’d like to walk more with my rollator, as I did before my hip started giving me trouble. Some days I manage, and some days I can barely stand. My pain and energy levels vary. What doesn’t vary are my duties as wife, mother, and writer. I do get some invaluable help, but overall, meals still need cooked, laundry done, dogs walked. My wheelchair enables me to carry out these duties. I am not lazy; in fact, I am trying to stay as independent as possible.
Phew! If you made it this far, thank you. I only hope that it helps someone who needs it, whether you’re experiencing chronic pain yourself, or a loved one is. Now, if you’ll excuse me, I’m going to stretch and pray for a good night’s sleep afterwards.
Wobbly Yummy Mummy 