As I mentioned in my Exodus post, there are going to be a lot more personal posts here on PGEW. My illness has truly taken over every aspect of my life, including the way I eat, shop and manage my cooking & prep time. This isn’t just a recipe blog – it’s my journey. Hopefully in telling my story, I can give other people in similar situations some ideas on how to make this most essential part of living much more manageable. – K.A.M.
So I’d planned on writing this fabulous post that celebrates those good days we chronic pain sufferers get from time to time. They are few and far between, so when they happen they’re very much appreciated. I’m still planning on posting that one, but not just yet.
See, sometimes you get a couple of those good days and start forgetting the bad days; then you’re rudely reminded of how awful things can be. A few weeks ago, I got my own shockingly painful and maddening reminder: my monthly shingles attack had begun to migrate from its usual location (left side of torso and back) all the way down my legs. Down both legs, no less. And later, all the way up to my face, my very worst shingles/PHN nightmare.
If you know about shingles, PHN and how it all works, you know that it usually only affects one side of your body. There have been a couple of times when it’s sneaked around to the right side, but for the past 2.5 years this has been quite localized. Until this month, of course. The left side was affected much worse than the right, so that was slightly consistent, but seriously? Down both legs? And my face??? Around my EYE? I’m already blind enough without your help, Mr. Varicella Zoster.
My ability to walk was severely impaired for a good two weeks with this latest attack. The pain in my left leg and torso was so impossible that after a while I’d just give up and let the tears fall, not caring who saw. I acquired a rather unsexy limp and now worry that this will be part of my newest “normal” in the future. I don’t even want to think about the whole face issue; that’s when shingles can get incredibly dangerous and sometimes life-threatening. So we’re going to pretend that was just a fluke and pray it never happens again.
But as horrific as the daily debilitating pain and constant fatigue can be, brooding over it just makes things worse. I know that now. I’ve learned it the hard way. I’m a worrier by nature (seriously, I feel a little out of sorts when there’s nothing to worry about… like I have too much extra time on my hands or something, lol) and very much in tune with my body. Any tiny change or shift in intensity or location of my pain freaks me out and makes me start diagnosing. And then I hurt more. And then I worry more about the pain.
It’s not a good space to inhabit.
Now, not worrying or thinking good thoughts or any other mind-over-matter thing that has been suggested to me does not make the pain any less real, nor does it make it go away, no matter what anyone says. This is my reality, this is my new “normal”, to always hurt. I get that and as much as I hate it, I’ve come to accept it. But trying to take comfort in the little things on the most awful days does make a world of difference. It helps one learn to manage the pain a bit more effectively because you’ve taken care of your mind. And what I’ve learned through my two and a half years on this journey is that your mind, while not as omnipotent as some people try to convince you it is, is an incredibly powerful pain management tool.
When you’re dealing with chronic pain or any acute stress, your mind also suffers. You feel beaten down, broken, defeated, demoralized – just down. It takes a lot of energy to be in constant pain, so you feel drained and a bit like a car out of gas. You can’t focus, your brain is perpetually foggy – you’re just a hot mess. But taking care of your mind, even in the smallest of ways, can help you better manage the pain than if you’re in that crappy head space.
Easier said than done, of course. I’ve had over two years of practice so I feel like I’m starting to get the hang of this. Here’s a list of random mind trickery and new routines that have helped me help myself on those really awful days (Good Lord, I sound like Jerry Maguire… “Help ME help YOU!”).
- When the weather is as hot as it has been, my pain flare ups actually offer a wonderful excuse to strap like 5 ice packs to my torso and cool down. It’s no dip in the pool, but the cold helps calm the nerve pain and helps me cool down a bit without having to stand in front of my one dinky AC unit.
- Because I don’t know when a bad pain flare up or shingles attack will hit, I’ve become much more organized in the kitchen so that I’m prepared for the I-Can’t-Cook-Tonights. By setting aside time during the okay days to cook and freeze bare bones staples like rice, quinoa and assorted beans, I no longer need to worry as much about how to get food in my body. Sure, there’s still some heating and stirring required, but it’s a lot less work than having to start from scratch. It took a while for me to get into that routine, but it’s made a world of difference stress-wise.
- Epsom salt baths. EPSOM SALT BATHS!!! I don’t know why it took me so long to agree to sinking into a warm bath of magnesium sulfate, but I’m happy to report that I’m finally a believer. I was down for a couple weeks in May with pain and malaise so bad I could barely move. A dip in a lavender-scented epsom salt bath and a good book were just what I needed to soothe my aching body. Affordable makeshift spa? Yes, please!
- Speaking of books, those are also quite helpful. So is music and any other soothing thing that you might have forgotten about because all you can think of is the pain. I never thought I’d have to “rediscover” reading and listening to music, but there have been times that I’ve felt so awful, even reading has felt like a monumental task. The malaise, the stabbing pain, the flu-like symptoms can be super distracting, making it hard to focus on something like a book. Push through it anyway, and soon you’re distracting yourself from the pain.
- Looking for the silver lining in things like newly acquired limps. I’m only 36.94 years old. Aside from breaking my toes every now & then, I don’t feel like I should be wandering around with a pronounced limp just yet. It took me a few days to even figure out how to limp properly after The Great Leg Attack of ’13, and eventually I could pick up about half my usual walking speed. But I felt really ungainly and ungraceful, so I sought out ways to make the limp work to my advantage. Thanks to many of KC and The Sunshine Band’s hits and a few more current tunes, I have successfully turned my limp into more of a sassy strut. I just stick to the rhythm of the song playing either on my headphones or in my head, sway the hips a little differently, and suddenly strut happens. I almost wish I’d figured this out a lot earlier because it feels pretty fantastic to walk like that!
- Last, but certainly not least: making sure you look as good as you possibly can. I don’t mean dressing to the nines and getting a makeup job at the MAC counter and posting 75 duck-faced selfies on Instagram. Most of us neither have the money, time or gastrointestinal fortitude for stuff like that. But when you feel like death warmed over, it’s extremely uplifting to look in the mirror and see that you don’t look as bad as you feel. This doesn’t mean you’ll look 100% fabulous as the pain and discomfort can be plainly evident. But it helps when you’re feeling down to have something you can smile about. (Note: For those of us with “invisible” illnesses this can sometimes be a double-edged sword as it will result in a lot of, “Oh, you can’t be that sick. You look great! You’ll get over it soon.” But if you can ignore that aspect of it, this is a great mental booster.)
Obviously some of these things won’t work for everyone as they’re pretty specific to what I’m going through. But I think you get the general idea: there’s a lot you can do within your limits that will help you deal with the pain or stressor a little easier. It’s not much, but being able to find coping mechanisms is crucial when you’re dealing with certain difficulties.
What are some of your favorite ways to take care of your mind while you’re going through extremely difficult times? I’d love to hear your ideas in the comments below!
PS – New recipe and a very cool announcement coming up next week! : )
