Have You Tried Turning It off and on Again?

Spring is finally started to come to Southeast Michigan, and with it, the expected fibromyalgia craziness.

First, mid-February’s snow storms brought pain due to humidity changes, but the solid week of snow after brought some relief. And just when my body thinks, ‘we are in the deep of winter and I’m good with this,’ the temperature rises again and all of the snow melts.

My body has now changed to the ‘what the heck?!?’ spring transitional mode early; this usually doesn’t happen until mid-March at least. These transitional periods mean that fibromyalgia symptoms can change daily. (And sometimes even hourly!)

Seven years after diagnosis, I feel like I should be ready for this. I should know that my body is going to do this until the temperature starts getting into the mid 50s on a regular basis, and I should plan my activity levels accordingly. But for all of my planning and scheming to take it easy on myself during these spring thaws, it seems something always gets thrown in that causes my plans to go out the window. This time, it’s crazy work hours, some mental health work and a low-grade infection (a UTI that I have antibiotics for because all of my tips and tricks to take care of it aren’t working anymore…if you want TMI…)

This past week, it all caught up to me. By Friday, I was part zombie, part comfort-food-carnivore; I was exhausted but would eat every bit of food you put in front of me. That evening, I didn’t just fall asleep; I passed out.

And I slept. And slept some more. 13 hours later, I finally woke up. And while I was no longer this zombie/carnivore hybrid thing, I still decided that everything that had been planned for the day was not gonna happen. Instead, I sat curled in my comfy chair watching my husband play video games the entire day until I passed out again.

And slept another 13 hours.

After the second sleeping session, I started feeling like myself again. I did a (modified) weekly run and continued to rest to shore up energy for the beginning of the work week. And looking back on things, I should have realized I was coming due for another fibromyalgia reset.

A fibro reset is exactly what it sounds like. Your body goes offline by sleeping deeply for 16-26 hours in order to reset your energy levels and mental capacity. I usually need one of these once every two months. But although I can tell when my body is starting to gear up for one, I don’t get to choose when the actual reset is going to happen. I’ll just wake up one day and either realize I’m still so exhausted I can’t get out of the bed (which is a majority of what my sick days are from), or I’ll be doing something and suddenly I can barely keep my eyes open.

I’ve found resets to be a lot like turning your computer off and on again. And it’s only until after the reset takes place that you realize how much things were starting to slip. You start to see the laundry piling up, tasks at work not being done completely, your diet and exercise regime going out the window, and other surprising things like a kitchen starting to look like the hubby created four different new recipes and none of them were ever cleaned up. And after you get over the shock of missing things, you can slowly start to pick up where you left off and get on with daily living.

I’ll admit, I’m not a fan of fibro resets because of their frustration factor. It seems like you just start getting into a new habit or routine when one happens, and it means you lose most of the momentum you’ve gained over the past two months. This is especially true with the diet and exercise. Even two days where you don’t keep moving or eating to your appropriate plan will take away months of work, making you feel like you are going backwards. Still, I can’t stop them from occurring. And I have tried everything I can think of to do so.

So thanks to the reset, I’m going to have to be spending this week figuring out what I’ve lost. So far, I think it’s just my stamina that has taken a big step back as I’m recognizing I’m pushing myself more to get normal chores and my exercise done. I’ve also noticed the daily stretches have become harder to do again, which makes me wonder if I need to bump back my stretching to easier exercises.

Yes, I know – To the average person, I’m sure it sounds like I’m being ridiculous. How could 48 hours of being out of commission cause anyone to lose strength, stamina or flexibility?

Welcome to the exasperation that is fibromyalgia.

The good news is that I had some good habits established before the reset. So that will help make up some ground. In the meantime, I’ll also do a quick revisit to my diet and exercise routines to see if they need an update, or if there is something that would work better for me. So at least the check-in actions will be something good that comes out of this.

Overall, I’m sure it’s a good thing to have a regular reset, much like resetting your computer or phone every now and then. At least on a computer or other electronic device, they function better (or at least more normal) after a reset is complete. If that was the case with a fibro reset, I’d be marking the calendar and counting the days toward the next one.

After this week’s check in, I’ll move forward again with modified plans, and see how far I can get toward my stamina and strength goals. I have to keep moving and stay positive about all of this. After all, gardening season is coming up and I have plans for my beautiful gardening space.

Living with Fibro: About that Exercise Stuff…

In my last post, I talked about all of the exercise that I was trying to do with fibromyalgia. I’ll admit, it was a lot. And I also admit, I didn’t do much of it without a struggle.

But the struggle became too much.

First, let me come clean. There was one part of my exercise routine that I didn’t mention in my previous post. I do a five minutes stretching routine every day. It is one designed by Joe Yoon from his better stretching book, and hits a majority of the muscle groups all at once. I also add a wide legged forward bend with an arm stretch into the mix to help keep in place two pesky ribs that like to cause extra pain. The entire routine is about 6 minutes long. It’s quick, easy, and doesn’t place extra strain on any joints. So it shouldn’t be a big deal to do it, right?

Well, not if you have fibromyalgia.

The extra six minutes of stretching means that is less energy I have for my day at work, any chores that I have to do throughout the day or to help me deal with any stressful issues that come up. It also means that I don’t have that extra energy for walks in the cold or to do strength training. What I didn’t realize is that 6 minutes meant that I was starting to borrow energy from the next day in order to get through the current day. I was making a personal energy deficit 6 minutes at a time. This is the type of deficit that only 16 hours in bed would be the only thing to help me get out of.

I didn’t get to the point of 16 hours in bed at least (only 13), but I got the message. If I really wanted to keep 6 minutes of daily stretching in my routine, something had to give. So I chose to get rid of my weekly elliptical training. I also chose not going out in the freezing cold to walk my dog. My dog isn’t happy (and neither is the hubby since now I pester him to walk her), but I really have no other choice. I have to keep moving or else I will tighten up to the point where I’m going to need to rely on my husband a lot more than I do now because I won’t be able to move very easily. Further, I have to choose what is the best thing to spend my energy on, and staying indoors won out.

So I am writing about my mistake here in the hopes that it helps others understand. At the very least, if you get anything out of this post, please understand this: Just because someone with fibromyalgia can do things one week, it doesn’t mean they can do the exact same routine the next. They may have to think on other factors like weather, stress levels, current environment, what specific chores are needed, what tasks are needed at work and many other things to ensure they get done what they need to do. In fact, they may have to totally rearrange what their schedule will look like based on all of those factors, much like I did here. This isn’t a disease that acts a certain, routine way. Instead, it literally is waging war on you. Depending on what you do and what your environment looks like, you can win against it, or it could win against you, and the battles shift very quickly between those two opposites.

So what am I going to do now? Since I feel the running and strength training on the TRX are most important, I have decided to cut all work on the elliptical for now. That energy can then be utilized for the full body stretching. And as much as I really miss the walking trails near my home, I will be staying in for the next week and a half at least. All my walks will be on the treadmill. I can’t spend the energy both dealing with the cold, fighting ice and walking.

I am hoping that I won’t have to do any more changes to my exercise. The big test to see whether that is true or not is this Sunday morning; my planned 5K on the treadmill. If I can get through it without pain, I’ll know that I’m on the right track. If I can’t, then I will need to cut something else back in my exercises, or reformat my strength training. And, I’ll have to honestly answer the same question that brings fear to my heart; ‘Am I simply still trying to do too much?’

While the question I may have to ask is scary, I have still learned something through this process. I’ve learned to listen more deeply to my body to understand the difference between having sore muscles, and having your muscles so tired that you aren’t healing properly between workouts. It’s a more important situation that I originally gave it credit for. Here’s to hoping I don’t make the same mistake again.

But that being said, I’m not going to stop dreaming about being an athlete, at least in some form.

Living with Fibro: Exercise

Since I am currently altering my own exercise routine, I thought it might be a good time to talk a bit about exercising with fibromyalgia. I’m dedicating a post to exercise because it is very important that people with fibromyalgia move every day in some shape or fashion. If we don’t move, even for a day or two, our muscles will start to feel thick and gummy. Go three or more days without movement and our muscles will feel rigid to the point where we lose range of motion and strength, which leads to an increase in pain. Yes, it is a true ‘use it or lose it’ scenario.

Endurance and Current Fitness Levels

Before I talk about my own routine, I want to say that the level of exercise that I strive for is my choice. Before the fibromyalgia, I was an athlete. I did martial arts, I was a runner and a dedicated yogi. Therefore I believe that because I had a high level of fitness back then, I can maintain a higher level of exercise than others with fibromyalgia. It isn’t that someone who has fibro cannot get to the same level of fitness I have, I’m simply saying the ‘route’ to get here and their overall exercise regimen would be significantly different than mine.

Regardless of the level of fitness I have, I still have to be choosy about what types of exercise I’m doing, thanks to fibromyalgia’s limit on my endurance levels. Running is currently my choice for what I burn the most energy on. I love being able to run a 5K, and I’m not ready to give that up. So I’ve accepted the fact that I have chosen running as my main exercise, for now. I can’t do that and do other extended work in another sport. That means advanced yoga asanas like handstands, extended strength training sessions, or any type of martial arts practice are all out unless I stop running. I am trying to build additional endurance so I can do more, but so far, I’m not having much luck.

I am bringing the endurance issue up to remind non-sufferers that people who have fibromyalgia have a very specific level of energy and endurance they can use each day. It doesn’t matter what fitness level you are at; you still have to choose what you spend that energy on. I choose to use my energy by doing more exercise (as I have no kids and a desk job), another fibro sufferer may have to use their energy in a work position where they must be more active, drive a longer commute distance, or tend to young children. I am absolutely certain that every fibro sufferer wants to do more than they currently are, we just can’t because we are limited by the disease.

My Current Exercise Routine

My current schedule is a 5K run on the weekends, usually on Sundays as I don’t have much else going on during those days and can sit for most of the day afterward. I also try to walk at least 30 minutes 4 times a week. This isn’t a fast walk, just something that can keep my heart rate up for a general period of time. I do 30 minutes on an elliptical machine once a week, and a 15 minute routine with a strength training system called TRX once a week on a day I’m walking. All of that together means I’m exercising 6 days a week. If I don’t make 6 days of exercise, I don’t beat myself up. It is all dependent on how my body is feeling, and I’d rather err on the side of caution than cause a flareup of pain. It took me 3 months of work to get this current level of exercise into my regimen and not cause a flare. And it still isn’t without a tradeoff. About 6 or 7 in the evening on most days, I’m done. Other than crocheting, watching TV or reading, I can’t do any other activity. So the husband gets to cook, drive us someplace if we have something scheduled, or do any necessary cleaning. He’s OK with that (so far).

Currently, my own personal goals are to try to extend the 5K into a 4 mile run and include an extra 20 minute martial art practice into my regimen. That isn’t going too well. On weeks where I’m feeling awesome, I can get the martial art practice in, but not the extra running. But I’m still going to continue to try for another month or two. Regardless of what high impact work I’m doing, for those few moments, I feel like an athlete again, and that means a great deal to me.

My Exercise Recommendations for Fibro Sufferers – Bare Minimum

For the average person with fibromyalgia/CFS who doesn’t have any other underlying conditions, I highly recommend at the bare minimum some sort of stretching routine to keep the range of motion that you currently have. If you haven’t been doing anything, it’s going to be hard to get started, and I’m not going to lie, it will hurt worse for the first week or two, but the extra pain that you will receive from the exercise will be the type of pain can be dulled by icing, over the counter pain relievers or with muscle ointments. And even with the extra pain, to me it’s worth it. I’ve found that even 4 minutes of gentle stretching a day will allow you to start feeling more comfortable overall, and possibly reduce the amount of daily pain.

I do have some suggestions for starting out. I personally like Joe Yoon’s Better Stretching as a starter book as the exercises are very easy, yet effective. He also has a great Instagram presence and demonstrates many of the moves in the book there (or you can buy his application Better Stretching if you want a more structured regimen). Other options include Miranda Esmonde-White’s Essentrics program, which was created out of the “Classical Stretch” TV Program on PBS (which I believe is still available at some libraries). She also has written a book called Forever Painless, which is a good introduction to both Essentrics and the TV program, however, if you choose the online Essentrics program or TV show to try first, realize it moves faster than Joe’s videos do.

Of course, this being the beginning of the new year, many people are seeing advertisements for dynamic stretching programs like Pvolve, Kalisa Fit, GMB Fitness, ALO/Barre Strong and Functional Patterns. Pvolve, GMB, ALO and Functional Patterns require extra equipment, so those are a ‘no’ for me, as I’m not going to make an investment in equipment if I don’t know up front whether a program can be adapted for a fibromyalgia sufferer. Kalisa Fit is nice, but even I had a struggle just getting through her 10 minute warmup. I also didn’t see any way to modify some of the moves, so although the stretching exercises were very good, I could see someone getting discouraged very quickly (especially with some of the leg and hip stretches that could hyper extend the knees or cause significant weight on the joint).

Yoga is also another option, but it is very hard to find any yoga apps that show modifications of poses, which is a huge need in the fibromyalgia community. We just can’t make our poses look like the ones portrayed by teachers and social media personalities and we shouldn’t try. But there are some options out there that I think are good. If you are brand new, I suggest starting with the book Yoga for Pain Relief by Kelly McGonigal. Yes, the poses look very simple, but they are all very effective when done regularly. Or, find a yoga teacher who works with chronic pain sufferers and who will help modify the poses for you. I will say it again as it was a sticking point for me at first – yes, the poses with modifications may look over-simplified compared to what you would see a more experienced practitioner do. (In fact, my own mother refuses to do yoga because she doesn’t think simplified poses like cat/cow do anything.) But they are still very effective at providing the same type of benefit as the ‘professional’ looking pose, and this is a fact I really wish the yogic community would express more often.

My Exercise Recommendations – Moving Forward

A stretching routine will ensure you keep your range of motion and lower your pain regimen. However, I did notice an increase in my endurance and energy by adding a gentle, low impact exercise like walking to my exercise regime. This is why I also recommend starting some sort of small exercise habit if at all possible.

If you want to start a walking regimen, besides getting a good shoe, I would recommend starting slowly; maybe 15-20 minutes three times a day. You don’t have to power walk to get started. Even walking your dog (which is what I do three out of 4 times I’m walking a week) is beneficial. And the dog will love it.

If you are ready to add more time, the general rule of thumb I’ve heard is to add 10% more time or mileage to your walking regime each week. I personally feel for those of us with fibromyalgia, that’s too much. Instead, I recommend adding 5% more time or mileage every 2 to 3 weeks. Anything more than that will cause additional stress and pain which will force you to do too much in one day, and that leaves an opening for a huge flareup of pain. I learned this ratio by my own trial and error; I trained for a half marathon using the 10% method and ended up losing the entire last week of training as well as ended up being sick from a flare of pain for an additional week. So I changed to the 5% addition and have found that it works well for both my running and walking routines.

I recognize that this can be looked at as circular reasoning; here I am suggesting something that will cause extra pain for a fibromyalgia sufferer in order to reduce the pain. This is what doctors don’t realize when they recommend fibromyalgia sufferers exercise. There WILL be pain. It WILL hurt. And if I may be blunt, it fucking sucks that it hurts so much. I simply want to be able to move and do the things I love without the pain. But for fibro sufferers it’s a trade off. If you want to do more, you have to find that balance of how much pain you are willing to put up with in order to get to the chosen level of activity. If there is one thing about this disease that hurts the worst (and the one I’ve cried about the most), it’s this fact.

Regardless of my own personal goals and venting, my hope is that readers of this post realize that it only takes a little bit of exercise will go a long way to helping sufferers deal with the disease. And since there is no cost effective drug, medical device or therapy that can take out this disease, finding any little bit of comfort to me is worth trying.

Living with Fibro: Sleep

It occurred to me that when people ask what fibromyalgia is like, the answers that they receive can be very general, pending on how the person afflicted with the disease is feeling that day. That person may or may not start to detail the challenges that we face on a daily basis. So because of this, I’d like to start 2021 out with a series of blog posts that describe how a typical day in the life of a fibromyalgia/CFS sufferer would look. In this first post, I’d like to discuss what a typical night of sleep is for me, as well as talk about how it is for me to get up in the morning. When reading, keep in mind that although my story is typical, it is not going to be exactly the same for all fibro sufferers, especially those who have additional fibro symptoms or other illnesses to contend with on top of the fibromyalgia.

Prepping for Bed
I know it sounds funny, but yes, I do ‘prep’ for bed. Depending on whether or not the fibromyalgia is flaring, and what the time of year it is, I have several go-to pajamas I can use. I have joggers (sweat pants with elastic cuffs at the ankles), and 3 nightgowns that I either wear with or without the joggers. All of the items are the softest ones that I can find, with the gowns being various sizes so that if I have tactile issues, I can pick one that is more fitted so that I’m not dealing with a wrinkle that wakes me up in the middle of the night.

Having multiple pillows and blankets are a must. Right now I get by with having 2 full size pillows and three smaller ones. The larger are for my head and in case I need to have pillows between my knees while laying on my side, and the smaller ones are to ‘brace’ my body should I have to deal with extra pressure from the mattress on one of my joints. I usually start the night using only one or two pillows, but may end up using more should a sharp pain in a joint jolts me awake.

Finally, I have a variety of foam earplugs in my bedside drawer. the slightest noise from my husband or the dog will also wake me up, so the earplugs are a must. Unfortunately I can’t use them all the time as my ears get sore from them, but when I can use them, they are a Godsend.

Sleeping Through the Night
The nights go one of three ways: Either I sleep like a log, I toss and turn the entire night, or it’s a combination of the two. If I’m sleeping like a log, it means that I probably took some pain medication in order to allow my body to sleep. And while I prefer to sleep deeply like this, it also has it’s consequences (as you will see later).

At least one night a week I toss and turn the entire night, regardless of whether or not I have taken medication. It’s these nights that are the hardest, because it could be caused by a multitude of reasons. I do toss and turn for some general reasons, like stuff going on in my head, being sick, dealing with allergies, having a flare or the hubby needing to get up or change positions. However, thanks to fibromyalgia, I can also toss and turn for some really crazy reasons. It could be because the fitted sheet isn’t properly on the mattress, and I’m laying on a wrinkle from the sheet or my pajamas. Last night, there were even wrinkles on the sheet that was laying on top of my feet and legs, and the skin in those areas started to hurt. I’ve been jolted awake by my legs and arms going to sleep, even though I was sleeping on my back with my arms at my sides. I’ve also been jolted awake because of the elastic in my underwear has become uncomfortable. Other reasons I could wake up include a new pressure point from my fingers, hips, knees and feet laying a certain way. I could even start to have a flare up due to my body being too cold or hot, or because of a weather change. Regardless of the reason, during these these nights I usually only get 3 or 4 hours of sleep.

A majority of nights are mixed. The first 3-4 hours are where I’ll sleep like the dead. Then something will wake me up, and then I’m tossing and turning for the rest of the night. To deal with this tossing and turning, I have 5 different medications at my bedside along with some water. Sometimes I can take a medication and go back to bed, but if there are times when multiple issues are keeping me awake, I have to choose the worst offender and take the medication for that since some of these meds interact and make one or the other ineffective.

Mornings
Mornings are the times when I see the most difference in myself from when I didn’t have fibromyalgia and now. The biggest difference is that every day is much more of a struggle to get up than it used to be. If I have slept very deeply, I will wake up and not be in pain for the first moment or two upon waking. But the minute I move, the pain becomes excruciating. Every joint, bone and muscle scream at me all at once because I dare trying to wake them from such a deep sleep. The more I toss and turn at night, the less excruciating the pain will be when I wake up. Yes, you read that right, and the issue is very common in fibromyalgia sufferers. The reason it hurts worse when I’m in a deep sleep is that my muscles stay in one position for a prolonged period of time. The longer they stay immobile, the harder it is to move them out of that position. This is one reason why shavasana (the ending corpse pose in yoga) is so hard to get out of after a longer yoga session.

After some of the first pain of the morning subsides and I have gained some movement, I face the trickiest part of the morning, which is taking off the blankets, standing and walking the first few steps. I try to be gentle with myself while I do this piece, but I must confess that it’s a fight each and every morning with myself due to the pain, because it’s multiple types of pain all at once. The difference in temperature from the removal of covers causes tactile pain, the swinging my legs off the side of the bed hurts my muscles and joints, and finally putting weight on my feet makes me feel like they ‘scream’ as they start to bear weight, and it makes it hard not to cuss for those first several steps.

This wave of morning pain will last about 10 minutes. Sometimes it’s longer should the weather be really cold, or if the ceiling fan in my bedroom is on. It is because of this last round of morning pain that I no longer schedule any exercise in the mornings. I also find that having to do any immediate decision making (like picking out clothes) or putting together any collection of items that I need for the day is incredibly difficult. So I try to get all of that done the night before if at all possible. I also don’t allow my husband to attempt to wake me anymore. Even though he means well, I’m afraid I’ll simply scream and cuss at him, and he doesn’t deserve that treatment, regardless of how much pain I’m in.

So that is as far as I want to discuss for this post. I hope that there will be those that read it and realize that there truly is a difference between fibromyalgia and someone with the occasional pain. One of the things that bothers me a great deal is someone without fibromyalgia trying to compare my pain with their arthritic hands, bum knee or the pain they still have from an old joint injury. They are not one and the same. Everything I’ve written about up here is something I have to prepare and deal with almost every damn day. I’m not saying your pain isn’t something that needs to be considered, but ultimately, this disease is so much more complex than people realize, and your bum knee or your old injury doesn’t compare.

For those reading this who don’t have the disease, I think the best advice I can give to you when dealing with a fibro sufferer is to give them space to talk about their pain. Don’t compare it with your own, simply listen to them and ask them what they need. Ask them if you can help. Just because we may look like we are feeling OK doesn’t mean that we truly are. And even if we don’t need the help at the time, we will feel we are being heard and supported – something most fibro sufferers desperately need.

Thanks for reading.

New Year, New “Resolution”

I hate the concept of a New Year’s Resolution. For years I faithfully made them in an effort to be better than what I was the previous year. But while the idea of a ‘new start’ is a good one, marketing tactics and low self worth can blow the concept out of proportion; making you feel like you are ridiculously fat, lazy and stupid (sometimes all three at once) which makes you give into the product du jour that will help you “live your best life.”

Now, my personal self worth is much higher than it was during my years of countless resolutions. However, I’m still not one who is inclined to try to change my personal habits during this time of year. Winter is hard enough on someone with chronic illness and pain. Instead of trying a new routine, I need to spend my energy trying to get the daily work and chores done, then spend what little is left seeking out warmth and rest.

At least, that is what I used to do in a normal winter. This one, feels like I will need to do more than that to ensure I don’t fall back into what I can only call the despair of the past summer.

But I don’t know if I want to call my new tactics a resolution. I simply have realized this past year that I am still not taking care of myself the way I need to. Now that isn’t to say that I haven’t been doing a decent job trying. I have been, but I wouldn’t be honest with myself if I didn’t say that with my current self care tools, I barely got through this past summer. And since some of the stressors summer are still in place, I need to find better ways to handle things. And I think I might have stumbled on something that would help.

This past week in the mornings, I started to ask myself a question. The question was, ‘What could my body and state of mind accomplish for the day?’ Sometimes the answer was that I could complete everything on my mental to do list. Other days, I couldn’t do as much. But either way, the question was really forcing me to focus on my own personal needs. And focusing more on my own personal needs may be a game changer when dealing with the rest of this winter.

Thinking logically, it makes perfect sense. Someone with a chronic illness has limited physical and mental energy, and I have to ensure that every last bit of it is utilized effectively, and is used in my best interest. The former, I do very well. The latter, not so much. Yet thinking about my own best interest is in some ways more important than what I can get done during the day. Thinking about myself means I will be healthier overall, where as a completed to do list coming at the expense of no mental energy means I’m more susceptible to panic attacks and depression. Sure, I have medications for the anxiety and depression that I could rely on, but one thing I know for certain is that I can’t fully rely on medications. When it comes to mental health, medications are a great aid, but they will never fully cure the issue. This is especially true with the root cause of your anxiety and depression are a physical chronic illness.

So, here’s the plan, or the ‘resolution’ for the new year: After getting up in the morning and becoming fully awake, I’m going to gauge what physical and mental strength I have, and then figure out what can be done on my mental to-do lists for the day. Then I will arrange my day around that. There will be days I may have to push a little (I still have to go to work regularly), but on those days, I can find other things that will bring some comfort.

I still have the tools I talked about in the last post that I continue to use, and to some, it may sound like I’m simply adding to my mental to do list for each day, which may become overwhelming. But I think asking myself what I can accomplish will simply help sharpen my perspective on the day. Perhaps the answer to the question will mean that I have to do some easy form of yoga for 30 minutes instead of trying to walk in the cold weather with the hubby and the dog like I had planned. Perhaps it means I need to consider taking a stronger medication for pain, or be extra gentle with myself and my work load. Sure, I may not always be able to rearrange the things I need to do that day (there is still a full time job that I must do), but by becoming in tune with what it is I really need, I can end the day more comfortably than simply collapsing on a couch for a couple hours and then painfully walking up the stairs to bed.

And now that I’ve written and re-read this, I might as well call this question what it is. I have a new years resolution. But for once, this one has me looking toward the new year with a bit of hope.

Looking Back and Moving Forward

It’s hard for me to look at my last post and remember that it was only several months ago that I wrote it. It seems instead like it was years ago. And while I am glad some of the things I had concerns about are now resolved (or are on the way to being resolved), I recognize that we aren’t out of the woods yet.

If you are anything like me, during this long summer and into fall, you may have some new symptoms from the chronic illnesses popping up due to the stress. I’m sure that this isn’t unusual, given the circumstances. And I think that fact needs to be shouted from the rooftops right now. Because again, if you are like me, you’ve been berating yourself for not being able to handle things on a day to day basis like you used to. But it’s OK we didn’t know that then, as long as we acknowledge it now.

And again, like me, I’m sure there were times that you were so overwhelmed that all you could do is grab the nearest comfort food (anything crunchy, warm and/or salty for me), head for the couch, grab the remote and find the first food-based reality competition you haven’t already seen to space out and feed your face.

It finally took my taking a breath and looking back on my personal behavior to realize that what I was doing was OK. It might have not been the best coping mechanism, but it was the only one that helped at times. I wasn’t doing significant damage to myself, and while I did portion out things the best I could at that time. And I got through it. I got through the anxiety-laden days of work, seeing the inequality and environmental issues loud and clear, being angry at myself for not doing more, and trying to keep myself safe from the virus all while I’m getting headlines from every media outlet screaming about shit being wrong, and dealing with family who choose to believe much differently than I did.

So now, I think we need to do two things. First, we need to take a moment to celebrate. I survived these past several months, even though there were a couple times I wondered if I would. And you, dear reader, you who may have a chronic illness like I do, or even if you don’t but found yourself in a much, much harder place mentally than you ever have before, you survived it too. And dammit, that is worth celebrating.

Second, we have to start planning for the next months. We have a midwest winter coming, which isn’t fun with chronic illness. We have new symptoms to figure out how to treat, and we have a pandemic that we have to protect ourselves against. And while we don’t know what societal issues will pop up, we have the ability to look back to find clues on both treating our new symptoms as well as thinking about what additional coping mechanisms we can use to get through the next couple months. (And one note, I’m certainly not giving up that salty/warm/crunchy comfort food and I don’t think you should give up that somewhat unhealthy coping mechanism either. I’m simply saying find more of them so that we have a bigger toolbox to draw from).

So the first thing I did to prepare is to look at my medications and changed them based on my new symptoms. And while I hate being on some of these particular ones due to the fact that my body can become dependent on them, I have to do it, at least for now. I can revisit the medication changes in the spring once we can move forward with a vaccine and try to get back to normal.

The next thing I did was to start a new activity regimen. I’m not going to call it an exercise regimen. What I’m doing instead is working on being active every single day. It may be walking my dog, sitting on the floor or on the couch and doing 10 minutes of stretching or modified yoga, doing my Sunday run or just working with a therapy ball on my hands and wrists while watching TV. I want to give my body something. Sure, it’s somewhat broken, but it’s still getting me through things, and my giving something back to it makes me feel better. That regimen is going to look different for everyone, and that is OK. the biggest thing you are doing with it is giving something back to your body. The thing I have learned in these past months is that when it comes to exercise, it doesn’t take much to help your body work a little better.

Thirdly, I’m going to continue to track what and how much I eat. No, I’m not putting myself on a diet. Sure, I am giving myself a calorie guideline, but if I pass that, I’ll simply enjoy the sound of it swooshing by. (Just like deadlines!)

I’m going to be tracking my food simply to be mindful of it, not to beat myself up for not eating enough or too much. Being mindful of the overeating coping mechanism, at least to me, allows it to be more effective. I’m making a choice to eat more because I feel upset by something. And while I’m writing that information down in my food tracking app, I’m also subconsciously examining what emotions are going on that made me want to overeat in the first place. That may not seem like much during the situation where you want to overeat, but it will do wonders for when you have time to look back again at this next trial.

Lastly, and most importantly, I’m going to be easy on myself. So long as I make a conscious effort to track my food for the day and do some sort of activity for the day, I’m good. Some days I won’t be able to do either, and that is going to be OK.

With these new tools, and the allowance of thinking a little more clearly thanks to new medications to help with these new symptoms and flare ups, I think I’m better prepared for this tough winter season. And hopefully this post will help someone else think about things differently so that they will also be a little more prepared. Because even if it is in our own individual homes, we are all in this together.

Reintegration Into A Changed World

Since my last post, things have been dicey. Some days I’ve done really well while others have gone to total shit. It seems like there has been no in-between, either. I’m either really good, or starting to wonder to my husband if I need to get my primary care physician involved.

Still, in the past two months, I have accomplishments to be proud of. I haven’t gained a huge amount of weight, even though I’m a stress eater. My husband and I have done a spring cleaning of the entire house. I have my gardens planted, and have setup a new workout space that I’m looking forward to using in the coming days. I’m proud of these things because they mean overall I’m doing just a little bit more than just existing in these quarantined times.

But just as I’m starting to get used to this new quarantined normal, the world changed again. This time the changes smell of chaos and revolution, pain, unrest and downright white-hot anger.

I’m not going to discuss the specifics here as these emotions and the reasons behind them are overflowing out of every possible electronic and paper outlet in the world. Everyone feels them, regardless of whether or not they choose to believe it. Not only is everyone in the world feeling these emotions, they are changing their lives because of them.

With the fibromyalgia and hypersensitivity issues I have, the world has become a very, very painful place. Any sliver of emotion from any source easily becomes my own, unless I happen to have enough mental energy that day to stop it. But, because I am already in a reduced energy state thanks to the quarantine and virus, stopping those emotions from invading my body is becoming much harder each day. Some days I become totally powerless, and everything comes flooding in so much that I can’t even think straight anymore. Meanwhile, the fibromyalgia has accepted this new energy and uses it to create more pain and problems. This means I now have to expend more energy to deal with the fibromyalgia symptoms, which then means I don’t have enough to protect myself from the emotions of the world, which means the fibro gets worse. And around I go in this horrible cycle until I either muster enough strength to put a stop to it, or I start considering other ways to get out of the damn thing.

But there are even more things that stick in my mind about the current environment. Right now, the entire world is getting involved in the outrage and are trying to bring change through revolution. And while that is going on, I sit here in my little home office, typing this and being upset with myself that I cannot get involved. I can’t go out to a rally. And although in my head I’ve come up with a thousand and one different things I could say on multiple social media platforms to show support for the communities that have been hit so hard from this brutality, I’ve rarely got the energy to even attempt to open my computer. And even considering doing so sends me wheeling toward a panic attack.

I cannot even begin to start explaining how hard this is for me. Thinking about what I could do to participate causes painful twists in my gut, tears to form in my eyes and I start to lose all energy in my limbs because of the overall pain growing in my body. The more thoughts on participation I have, the more the pain continues to grow to the point where I’m not sure I’m even going to make it to the closest chair or my bedroom to lie down. In the lucid moments I do understand my body is truly sick, that these are real symptoms and I DO need to take care of myself. But when I’m not lucid, all my mind tells me is that I’m faking to get out of participating; that just sending donations, prayers and having hard conversations with family who decide to bring the situation up to me is not enough anymore. My mind says I’m sitting on the sideline and my inaction is simply causing things to be worse. And trying to look away for a fresh perspective simply means my privilege is showing, because there are others whose whole world is in turmoil and they don’t have any way of escape.

During this revolution, my company has started the process to open its doors and have workers come back into the office. So with this new transition looming I remain in what I can best describe as a state of shock. Logically, I know I’ve done everything I can during this quarantine period, and I’ve even gained some ground on things that needed done around the house. As far as this revolution, I’ve sent donations where I could, and signed up with groups that will help funnel that money where it is the most needed. And because my company is opening back up, I need to start focusing energy back to my job. So when I can stop my mind from yelling at me, I know I’ve done everything I can, because anything I do still needs to be done in the perspective of my own health and wellbeing. Posts like the one below I saw on Facebook today help. I’m grateful I saw it, because that is the inspiration for why I have written all of this out here on this blog. I AM doing everything I can, and that gives me some comfort. I just wish others would understand and acknowledge it.

Image originally posted by author Christopher Penczak

I truly hope that those who are screaming the loudest about people being complacent because they don’t understand why we are idle realize that those screams hit a nerve with those of us who are on the same side as they are. There are those of us here who could very well lose our lives by trying to take excessive action. Our bodies and minds just can’t handle what we wish we could do right now.

I have no doubt that I’m not alone; that there are probably thousands out there right in the same boat as I am. And I’m sure that I’m also not alone hoping that I am indeed making some sort of difference. But when the only things that you can truly do is to give thoughts and prayers, you simply have to hope that they haven’t been diluted so much by those that offer them in false sympathy that they don’t mean anything anymore.

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.