A New Normal

Since the writing of my last post regarding flare recovery, life has changed tremendously. A new normal has settled in; something of which I don’t believe anyone in their richest imaginations could have thought of. Sure, many have thought about a pandemic and what it’s possible outcomes would be. But in many cases, those dreamed-of outcomes are wild and spectacular with accessories akin to the destruction of human civilization (and possibly with the inclusion of zombies). In it’s place – a quarantine that isn’t a quarantine; get takeaway from your favorite restaurant, get provisions (or figure out alternatives that are still available), from your local grocer, work from home or hangout with friends and family online. And do this all while sitting in a waiting game to constructed to slow a virus down from running its course on humanity.

This new normal is in a word, weird, even for those of us who are prone to be introverts. We get up, putter around the house, do work if you are able to work from home, eat, stare at a TV or computer, go to bed, and repeat. All with this impending doom and fear of this virus sitting about our heads and shoulders. To me, it feels like a heavy rope of burden that you cannot quite get adjusted to, and therefore you feel its effects every moment of every day. And along with that heavy burden come questions we are all asking. Will my partner or I get the virus? Do we have it now and not know yet because we are in the asymptomatic phase? Can I keep my job a little longer? Dare I consider going out to get provisions today? How are my friends handling this? Do I have enough to get through this? How much longer do I have to endure?

The fibromyalgia, in this situation, has meant that ropy burden of quarantine has painful thorns brought on by the entire situation. My pain levels are constant, enough to ensure I have to watch what I do, but not enough to keep me in bed all the time (like I could do that anyway). The pain feels like it sits in my bones and joints much like it does when the weather changes or when there is high humidity and cold. But where before I could make it go away with a warmer sweater, extra OTC meds or gentle movement, now I cannot get rid of it. It wakes me up when I move in my sleep. It makes it hurt to sit, to stand, and sometimes it even hurts when sitting on my couch. Even my last-resort hydrocodone doesn’t always touch the pain.

The coping mechanisms for this frustrating feature of my new normal have been one of two things; either exercise, or eat. Building back my endurance from the February flare has been slow-going, which means exercise doesn’t help as much as I want it to. And that means I’m falling back to an even stronger urge to eat. Eating has it’s own problems, as I could very easily (and quickly) put back on all 80 pounds of weight I’d lost several years ago. I’ve always had eating problems as long as I can remember, and keeping that in mind I’ve forced myself to at least look at the calorie counts of what it was I was popping in my mouth to ensure I don’t go overboard.

And while I hurt, I know I’m probably one of the lucky ones. My husband is home with me. We have enough food in the house, which means we don’t have to go out often. Our housing situation is stable; and so far, working from home has been OK. And I’ve even engaged my husband in some spring cleaning activity. We have almost half the house done, and I’m still hoping to get his help on the rest of it before the end of this quarantine, as I’m sure when this is over, he’s going to take one look at me trying to hand him a bucket of cleaning solution and washcloths and run screaming.

Overall, things could be better, things could be worse. I’ll keep taking it day by day and hope things get better soon.

The Day After the Flare

The day after the flare starts promising. Sure, you’ve probably slept most of the day away (and I would have, had I not had a 75 pound German Shepherd wake me up mid-morning). But you feel better. The pain has dropped, perhaps it doesn’t hurt to walk nearly as much as it did the day before. Perhaps you feel like you can start to disassemble the ‘nest’ of pillows, books, remotes, laptops and other various icepak and ointment accoutrements you’ve assembled so you don’t have to move too far. And perhaps you have enough energy that you actually feel like getting some housework done.

And that is when it gets difficult. Sure, you may feel like you can clean up the house, do the dishes and the laundry, and maybe even get a workout in. But all of that will eventually bring the flare back.

The thing to remember about flares is they are a lot like recovering from the flu. You may FEEL like it’s all over, but one false move and you are back in that nest, feeling pain in every joint and muscle, barely able to move.

So now the choices happen. Do I do the laundry? What about the dishes? Can I really make lunches for the week, or do I depend on frozen meals this week yet again, even though they are getting expensive? What about dinner? It was your turn to make it, and here you are considering whether or not laundry is more important (it turns out it was – you need clothes for work). The hubby was OK with picking up takeaway for dinner, but there is yet another expense as that cost a lot more than the chicken chowder you were planning.

It’s really easy to get into your head and stay there when these choices come up in this situation. Yet chronic pain patients need to learn not to feel guilty. We have 40 hour (minimum!) work weeks to get to this week. We have other obligations that we have to be strong for, and if that means we spend another day slowly getting acclimated to life after a flare, then so be it.

It doesn’t mean you can’t be frustrated. I REALLY wanted a run today. It’s been two weeks since I ran last, and since I usually ‘run out the crazy’ by throwing all my frustrations with life into my run, I feel really frustrated. It’s been so long I know the 5K I want would really hurt too much, and be too much pain to recover from. And, I know if I do the 5K today, I may not be able to get to work tomorrow. It’s a choice that is really hard, but I have to be responsible. And I hope that I’ll get that run in next week.

So if you are recovering today, I feel ya. I understand what you are going through. And I hate it right along with you. I want more for myself, for my husband, for my life. And I guess I’ll just start trying to get back to striving for those activities tomorrow.

The Best Laid Plans of Chronic Illness Sufferers go Awry

I’m looking back on this blog after another exceptionally long time away and realizing that I really (yet again) didn’t have much control over the hiatus, and the date of my last post clearly proves that. Not long after that post, I injured my back while moving large tubs of cat litter around my office to vacuum (we have four cats, and with that quantity, the little litter boxes they sell don’t work very well. Large storage bins of litter are much better for the cats, but not easy on the body!).

The injury was a tear in the muscles around my L2/L3 vertebrae, caused by twisting while holding roughly 30 pounds of weight precariously. And of course, I did what almost any chronic pain sufferer does with pain; I tried to ignore it and keep moving, because I felt like I didn’t have much of a choice to do anything else.

But unfortunately the pain wouldn’t let up. In fact, it got so bad that I ended up taking multiple doses of my precious last-resort hydrocodone a day. So a first trip to the doctor was made about a week later, the diagnosis was made, and I was sent home with the blessing to take more hydrocodne as I needed, but to take it easy.

So I took it easy. Or, at least I thought I did. But as the pain continued to slowly build, my mobility started going out the window. It got to the point where all I could do was come home and sit either in bed or lay on the couch with ice packs, topical creams, heat wraps, OTC meds and the use of my emergency hydrocodone.

Finally, I went back in October to my doctor, who suggested I go see a physical therapist for manual therapy. I had done manual therapy before, but I was not prepared for the intense and painful work that was needed to get me back in shape.

I should have realized I was in for a long haul when my physical therapist used the words “hot mess” to describe my back and pelvis. Not only had the muscles not healed, but my pelvis had tipped, one side had twisted away from the other AND moved forward. And along with the muscles healing, my Thoracic spine wasn’t doing much better. I had twists in T4 on both sides of my spine, causing me pain that I had simply thought was fasciitis for all of these years. All of this also caused muscles around my spine to *think* like they were in a normal position, so when they moved back into their proper position after the spine was straightened and the pelvis put back, they decided to rebel for days with muscle spasms as they had no idea what to do in this new ‘normal.’

Three full months of regular therapy later, I’m finally starting to move again. I’m slowly adding more exercise back into my regimen, I’m back at work after a bit of a break, and I’m starting to feel like my normal self again. I’m not out of the woods by a longshot. My physical therapist thinks that it’s going to be another three full months before the muscles in my back fully heal, and the rest of my back muscles start to get fully acclimated into this new ‘normal’ position. Until then, no real, heavy lifting and I have exercises I must do daily in order to keep things in their proper place.

The entire situation has been very hard. But this is what it means to have fibromyalgia. Clearly there were things going on in my body that I chalked up to fibro pain that clearly were not. But with fibromyalgia, it’s hard to tell what is simply the fibro, and what is an actual injury. And I’m sure I’m not the only fibro sufferer that has this issue.

But now that I’m starting to feel a little better, my resolution is to post here more often. I want to share my story of chronic pain, not to ask for a pity party or for others to feel sorry for me, but because I find strength from sharing. Sharing my journey helps me understand what I can do better, what mistakes I made and what real strength I have when I read what it is I’ve done. It’s healing, and it’s powerful. And hopefully, someone else may read this and it will help them know their struggle is not a solitary one.

So in the coming months I have lots of ideas for posts and am looking forward to sharing my story, my ideas for dealing with this shitty disease and hopefully hearing about others stories as well.

The Journey Begins

Hi there!

Welcome to Living a Fibro Life.

This is my second attempt at a blog to log my fibromyalgia. The first one, “A Girl Fighting Fibro,” went down a couple years ago due to multiple reasons, one being the fact that I didn’t know what the hell I was doing trying to fight Fibro in the first place, so my posts really didn’t have much substance.

Now, things are a little different. I think I’m figuring it out, at least little by little. I have more wins, but I also have more loses. But this time those losses are becoming things I can learn from and not be totally devastated by.

I’m moving forward, and I’m feeling stronger, and I think I have more to say. At the very least, my hope is that I’ll provide a space for other people to understand that although it feels like a horrible fight, and it presents lots problems, it can be managed. And maybe, just maybe, something I say here will help someone else not feel so alone, or have hope that they too can move forward. Perhaps someone may even come forward with an idea that I hadn’t thought about before, and I can learn how to better manage this diagnosis.

Either way, welcome again. I’m looking forward to seeing what comes out in this adventure.