The Aftermath: What I Need to Remember

Last night’s post was rough. I’m sure it was uncomfortable to read, and perhaps many people didn’t even get through it. I certainly cringed when I reread it this morning, and not just at my bad grammar. But as uncomfortable as it was, I needed to write it. I needed to try to take others to that place fibromyalgia sufferers sit in when we have these intense flareups. I needed someone else to see what it is I go through, regardless of how dramatic it looked.

Humans naturally shy away from things that are uncomfortable. Our immediate reaction is to try and fix it. We don’t want to be made to sit with things that can’t be fixed. But that is the issue. With fibromyalgia, this uncomfortable area of feeling broken and not being able to fix ourselves is where we often are. Another pain flare up just brings another day where we reach for help with no end or cure in immediate sight. And with reaching for that help, we bring on another series of thoughts in our head about how yet again we are this unpredictable burden to everyone around us.

I’ve been wanting to write another post about last night’s pain all day. I wanted it to be hopeful. I wanted it to soothe the minds of those who read last night’s post and just left the page not knowing what to think. I wanted to write a post to reach out to my friends on Facebook who saw the initial one just to say, “HEY! I’m OK now! Sorry for ranting and being such a burden and drama queen!”

But things aren’t better. I need to be ok with what I said last night (bad grammar and all) and accept that even though there is a part of me scheming to get some sort of yoga, a walk or any other physical activity in my life today, it ain’t going to happen. And there is a solid possibility that it ain’t going to happen tomorrow, either.

Life is pain. Anyone who says differently is selling something. Fibro sufferers know this better than most.

My burden took me to my knees last night. It had me mentally screaming in agony, and I seriously thought that this time, I’d be crushed by the pain I was carrying. But I did wake up this morning. I made it through a hard night, just like I made it through the last time I thought I would be crushed.

Yes, humans have this flaw that we don’t want to see the uncomfortable again and again. But we also have the amazing ability of being resilient in both body and spirit. And that is something those of us with fibromyalgia need to keep reminding ourselves of. We are stronger than we look, stronger than we feel. And just when we think we are broken from pain, we will still wake up the next morning.

Don’t get me wrong. I’m not saying one day we will wake up and the pain will be gone. It certainly isn’t gone for me, regardless of how little I’ve done today and how much I stayed down. But my pain burden is easier for having done so. And maybe tomorrow morning it will be a even better. I’m trusting my strength right now. I’m trusting that intuitively I know what is best for my body, and relying on that strength to do the things I really don’t want to do right now, which is to keep my ass in a chair or in my bed, regardless of what my head is saying.

What I’m doing today is just another facet of being your own advocate. Yes, there will be times when you feel like the pain will just never stop, and all you want to do is things that will help you cope right now because the pain is so bad you can’t think about anything else. And in those moments, we have to give ourselves the right to scream, cuss, cry, eat and do anything we can to cope. But the moment will pass. And when it does, and the pain starts to subside, we have the resilience to pick up the pieces and begin again.

Tonight, I’m not certain if I will find myself in the ‘beginning again’ part, or the ‘scream, cuss and cry’ part. But this time I promise not to write another badly edited post about it. Instead, should it get that bad, I’ll ask for help, again. And tomorrow will be another day of seeing how I feel, and doing my best to actively deal with it. So far I’ve got a 100% track record of making it through crap I didn’t think I could. I like my odds.

What We Need You To Know

I wake up every morning in pain. However, today’s pain seemed to be especially bad; probably because of the cold front that came through and the fact that I dared to work in my garden pulling weeds the day before. My fingers were stuck in a curled position that made turning off my alarm an interesting experience. In bracing for getting up, I took in a deep breath, and quickly regretted it as my chest muscles decided to protest the extensive quantity air in my lungs.

I knew from that point on, it was going to be a bad pain day.

After mentally cheering myself on to put my feet on the floor and stand, I finally was able to feel some of that pain subside as I headed for the bathroom to wash up. I remember being grateful that I had no face-to-face meetings scheduled for the day, so that meant comfortable clothing and no makeup would be acceptable. Running a brush through my hair as many times as I could withstand the pain from holding my arm up above my shoulder completed my fashion choices for the day,

Work and movement was at a bare minimum today. And the same rest-as-much-as-possible schedule will probably be the theme for the next day or two while I figure out what crime I have committed against my muscles for them to behave this way. I must have done something horrible, because even though I did the best I could to calm this flare down, pain levels have escalated to the point where Im uncertain if I will get a decent sleep tonight.

If it sounds like I’m whining, I’m not. If you read this and think I’m simply trying to get attention, I can assure you that isn’t the case, either. What I am trying to say is that fibromyalgia is a beast that no one but the sufferer truly understands. This beast not only screws with every system in your body, but it also exacerbates any condition that you ever suffered. Pull a muscle? Fibromyalgia will include lots of extra pain along with that muscle’s recovery. Attempt to do something out of your normal routine? There’s a flare for that too. Hell, I’ve had flareups of pain from a hard sneeze before.

The most serious, most important point I’m trying to make here is that someone diagnosed with fibromyalgia will always be in some sort of pain. And I mean ALWAYS. That pain will alway try to break down your spirit, your will, and your self worth very quickly. And those breakdowns happen quickly, especially when that pain impedes day to day tasks, like it did today for me. Listen – this pain is real, and the pain can be very dangerous to those of us with histories of anxiety and depression.

Tonight, I’m very lucky to know I have a support network that I can lean on (and I just did). But there are quite a few people out there that may not have that network. Instead, they may have people around them that don’t think they have the disease, are faking it, or are just thinking that they are blowing their pain out of proportion. Trust me, they aren’t.

There is a reason why there is a high rate of suicide within groups of people with fibromyalgia. I will say it from experience. This pain CAN get to be too much, and when that happens, there is no way out from thinking things are so bad that you would do anything to just end the pain. Trust me on this one; It’s very, very hard to stop yourself from thinking that way when every shallow breath you dare to take makes your ribs feel like they are on fire..

So just do me a favor. If you know someone with fibromyalgia, check on them a little more often. If they start speaking to you about their pain, hold space for them. And by holding space, I don’t mean to try to explain how your pain is just as extreme as theirs. Just listen to them. Help them feel heard and understood. Let them know that you recognize the severity of the pain and of the situation they are in. Maybe even help to get them comfortable by bringing them food or getting them to a place where they can rest. These can be truly lifesavers to someone with fibromyalgia.

Tonight, with the prayers and thoughts of my support network, I will rest with my pillows and blankets I crocheted just for this particular situation. I recognize that my spirit is starting to bend from the weight of this pain, so I’ve called in extra support, and I’m going to do all I can tonight to feel better.

But regardless of how much I hurt, I wanted to speak these truths about the pain. Not just for me, to hold space for myself, but for others who have friends and family who don’t really understand what its like to have fibromyalgia. And if this post reaches one person and makes them think about this disease in a new light, well, it will be worth the pain on my arms, hands and fingers to type it out.

Thanks for reading this far. Now go hold space for a friend with a chronic illness.

Be Your Own Advocate

A chronic pain scale

Unfortunately there are some certainties in this life that sufferers of chronic illness have to face. From facing employers who do not have equitable work policies to dealing with healthcare providers who just really don’t. know what is going on with our bodies, it’s enough to want to make you cry. I know I have at times.

But it’s because we have these things to contend with that makes what I am about to say even more important. Yes, there will feel like there are times when we are the victim of our illnesses, and we have to allow ourselves to grieve for things that are no longer open to us. But then, regardless of whether or not we have a caregiver in our lives, we must become our own advocate and learn to fight for the things that we know we need.

This doesn’t mean we are going to get everything we advocate for, But with enough thought, data collection and learning to understand what you can and cannot get, you can be surprised at what can go your way.

Understanding Your Energy Use

For the first several years of my illness, I still tried to push myself to do some of the things that I had done before the full onset of my symptoms. And while I did have some accomplishments, most of them put me in bed for days afterward. I realized that some of my issue was that I had no idea what I was capable of; I simply pushed through any pain and uncomfortable, thinking I it wouldn’t cause any repercussions. I was wrong.

Figuring out what I could and couldn’t do took a lot of time. And I’m still doing it, 7 years later. I had to start from the very beginning by giving myself time to do the bare minimum; work, food, hygiene and some cleaning of the house, and basic cooking. After awhile, I realized that I did have some energy for other things on certain days, so I started scheduling a little more on those days. But I still kept at least one day a week to do the bare minimum (and still do). By tuning into my body, I was able to better understand what energy I needed, where I could become more efficient and where I needed to spend more time. And I also figured out the warning signs of when I was about to put myself into a flare, which was crucial to understand.

Get your Medical Information Documented

This sounds like it’s a no-brainer, but I’m still surprised at how much I think I’ll remember about my medications, only to not be able to give that information to a healthcare professional when asked. I now carry a list of my meds in my bullet journal so that it can be pulled out when needed.

But medications aren’t the only medical information we should be tracking. If we can’t effectively communicate things like pain types and pain levels to healthcare professionals, we will never be able to allow them to help us properly. I will never forget the times when I worked in an ER triage and saw a nurse’s frustration at working with a pain patient. She she would ask how bad something hurt on a scale of 1 to 10, many patients would simply say 11. While that response gives adequate information about how upset the patient is at their own pain, it doesn’t do much to help someone understand what they are going through. A pain scale with descriptions can be very helpful in that situation, and can be printed out and kept with your list of medications. That way you can read the description along with the number, which allows more understanding about the state you are in.

Prepare to be Your Own Caregiver

I wish everyone who has chronic illness the best caregivers they can have. Really. Although I’m very lucky to have a good caregiver and can usually effectively communicate my needs to him, there are many times when the level of pain that I’m at doesn’t allow me to tell him what I need, or he’s in the middle of work or possibly not at home when I’m flaring. It’s in the cases where he’s not available or when I can’t tell him that I need something that I have to fight my body to get whatever it is that I need or want to be more comfortable. And I don’t wish that fight on anyone.

But, the fight to take care of yourself in flare ups does happen. And because it does, being prepared is huge. To get prepared, I thought about my last flare up and thought about what I used. I needed extra blankets and pillows, wanted a bag of popcorn for comfort, and wanted to watch some mindless TV shows. I now have extra blankets and pillows downstairs as well as up, have saved some seasons of shows for flares, and I also have a stash of medications near my bed with a bottle of water just in case I can’t make it downstairs. That way it won’t be so hard to fight to get the things I need should the hubby be away.

I know I’ve just scratched the surface here. There are many other things that you can do to make things easier on yourself when medical issues rear their ugly head, and my plan is to talk more about this soon. But I think the biggest thing that I want to get across, especially to those who may not feel like they have the support that they need, is to be that advocate for yourself. Know what your limits are. Have things written down and available in a purse or bag. Keep things ready when flareups strike. I know for many of us thinking of ourselves is hard to do, especially when we have jobs, families and homes to take care of. But we cannot take care of those things if we don’t put in the time to take care of ourselves first. And the sooner we learn this lesson, the sooner we can work to get back to some semblance of a normal life.

The Plan to Reengage with the World

With a snap of the fingers (and new CDC guidelines), for those who have been vaccinated, the pandemic seems to be over.

Yesterday, it was publicized that about 62% of the American population have received at least one vaccine. And with President Biden wanting that number to be at 70% by July 4, the world is going to open up pretty fast. That fact, along with the decision of my company waiting until after Labor Day to have us resume on-site work, has me thinking about this oncoming summer of change and what its going to mean for my day to day routine.

Part of me wants to do the same thing I see many others on my feed do; immediately embark on a plan to lose the Covid weight, install healthy habits over the ones that I got into during the pandemic, and be able to walk into my office in September stronger and more sure of myself than ever before. And overall, that is what I’m considering doing.

But I’m going to do it on MY terms, and not based on the pie-in-the-sky goals of what most media fitness junkies want you to strive for. And don’t get me started on the photoshopped-bombshell pictures of what society thinks a healthy, athletic person should look like. I need to think logically, because trying to do it any other way would only exacerbate the chronic illnesses that I’m doing my damndest to live with.

So what is the “right” way to make change?

I think where many of us get into trouble is that they feel like they are starting from a place where they dislike everything about themselves. They hate what their body looks like, and are constantly reminded of what it can’t do. They hate the habits in their life that have made the situations that they are now in, and they want to change everything, and do it NOW. I’m not going to say that doesn’t work, but it definitely is a path that won’t work for me anymore. The last time I tried that plan of action was when I trained for my last half marathon, and ended up losing almost a week of work due to the fact that I had trained myself right into a serious fibromyalgia flare.

We also have to look at our environment. This pandemic has caused trauma to many, many people, and it still continues to do so. We have to be gentle with ourselves so that trauma can start to show itself and begin to heal. Throwing a brand new diet and exercise regimen into the mix isn’t always the best thing when you still may be eating for comfort, or needing to give yourself even more mental rest to be able to get through the work day, deal with familial issues or the political craziness that still plagues the United States. .

With all of that in mind, my suggestion is not going to be to start with the end in mind. Instead, try to simply start with small things that can be done now. In my case, I’ve still been counting calorie on most days, and I have a good idea of how much calorie I eat each day. So my first challenge is going to be to drop that daily range by 100-200 calories. It won’t be much to lose weight, but it’s something to get me in the habit of thinking about what I eat. My second challenge is to add extra activity to my day. It might be walking on the treadmill for 30 minutes, taking my dog out for a walk, or doing more yoga, but whatever I do, am going to do at least one of these each day. And I’m not going to do them to the point where I’m pushing myself; if it means that I’m doing 30 minutes of chair yoga because my legs hurt too much, it’s still yoga, and it still counts. (I also have a plan for 30 minutes of yoga in bed in case I really have a bad flare, just to keep going on my commitment.)

The Next Steps

After about three weeks of cutting a little bit of what I eat and adding some activity, I will then consider to decide what I want to accomplish. Do I want to focus on weight loss, running outside or doing races again? Maybe I just want to work on core strength, or standing endurance for when I get back into the office and start to have those hallway ‘meetings’ when I get asked questions as I’m moving from place to place? Whatever it will be, I want to make those decisions based on how I feel and what I think I can do, not what I feel like I’m expected to do.

Setting small daily goals first is to allow myself to get some confidence that I can attain the larger ones with proper planning and work. And not only will I feel more confident, the two steps I outlined above will start me mentally thinking about the very things that will help me move toward loftier goals with simple tweaking. Sure, I’m not going to be one of those ‘before and after 90-day success stories’, but I’m not willing to beat the shit out of myself to become one of those stories. That’s one of the main reasons why I have the chronic illness in the first place; I pushed my body again and again to be stronger, faster, leaner and endure more, and all I did was create an environment for breaking myself.

Failure is an Option

Things happen, and there will be days when I don’t meat the two goals that I have set out for myself so far. But I’m not going to sweat it. Especially because of the chronic illness, I have to let my body lead here, not my head or what I think I ‘should’ be doing. There may be days where the weather means I have more pain. And while I have that bed yoga routine at the ready, there is a possibility that I may not even have the strength for it.

The other issue is that we aren’t all out of this pandemic, either, and there will still be stressors when dealing with Covid deniers, or those still polarized about the election. Believe it or not, both still exist. In fact, I just had one show up at my house to do some maintenance! I had no idea he was a Covid denier until halfway into the task, he asked my husband what he did for a living, and when my husband mentioned he worked at the hospital, he went on a rant about Covid and false case numbers! Needless to say, I had a drink that night, which put me over my suggested calorie limit for the day, but I didn’t sweat that too much.

Accepting that there will be times that we fail in our goals is not allowing failure to automatically occur. Instead, it’s the first start in not beating yourself up when it does happen (and it will). We are human, and we will fail, as we are not infallible. If we were, we wouldn’t be on this planet in the first place.

In those cases, you have to tell yourself that you will do better the next day, and then work to do so. By doing this, you may find that in the end you will actually have less failure overall, because instead of spending the energy to beat yourself up, you are using that energy to do better.

So those are my thoughts and plans on moving forward through the summer. I don’t have any grandiose plans of trying to run a half marathon or compete in sparring at summer’s end, but I do think that I’m on my way to being just a little bit healthier, mentally and physically, which will serve me well once I get back to the office. And not only has my documenting the plans here forced me to make a public accounting of what it is I want to do (I said it, now I have to do it!) I hope that it allows someone else with chronic illness recognize that they also can do more than they think they are capable of. It just needs to be done in small steps, and sometimes without the main goal in mind.

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.