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: 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.

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.

Find Your Pace

About a year and a half into my diagnosis, a well wisher sent me a picture of a woman doing a yoga posture. It was a forearm balance, a variation of Feathered Peacock Pose. The yogi in the pose had fibromyalgia, and she made this pose look effortless. My well wishing friend was basically saying that if this woman could do this pose, that I could too, even with the Fibro.

At this point I wasn’t giving up on doing the same things I did before the diagnosis yet. I pushed the hell out of my body to try to continue to attend Tae Kwon Do and Hap Ki Do classes and keep up with the rest of the students. And I was still pushing through 40 hours of work, yoga and running when I could. So saying my body hated me at that point was an understatement; I hurt like hell every single day, but I refused to let up.

To make matters worse, I had gone several rounds with different medications to try to get the pain under control. I had gained 40 pounds at that point thanks to the side effects of those medications. And at this point, additional problems were already starting to kick in, problems like IBS, depression and anxiety.

So I see this picture, and recognize I’m nowhere NEAR the level of yoga that this yogi could do. And the icing on the cake… the description said she was a mother, and in her leggings and top, she looked like she had a body to kill for.

The only thing this picture did for me was make me realize I wasn’t there. I wasn’t at a level of perfection that I wanted for my body. I didn’t have that strong of arms, I couldn’t lose any weight (and seemed to be gaining pounds by the second) and there was absolutely no way I could look that good in the body I had. So how the BLOODY HELL could this woman do it and still have fibromyalgia??!? And how the hell could she make it work when I was busting my ass and only injuring myself further?!

The depression finally kicked in pretty damn heavy when I finally came to the conclusion that no matter how much I tried, no matter how many times I counted calories, pushed my body through exercise or did anything to try to change my body, it wasn’t going to budge. The Fibro had dashed any hope of me having a body I loved; dashed hopes of my obtaining a black belt in either martial art, and it dashed any hope of doing yoga poses like that.

And it was my fault. At least that is how I felt at the time.

Now, I know a little better, or at least I hope I do. Perhaps my body is just very different than hers, and we probably have very similar limits on our energy; but just choose to spend that energy differently. Perhaps she is a full time mother, and does yoga on a regular basis. I split my energy up into working out of an office, chores at home, running, martial arts drills and yoga when I have the time and energy for it.

Part of me wants to do the comparison in my head. ‘Well, I bet she can’t run a 5K nonstop.’ Or ‘maybe she has never thrown a kick in her life, where I still can.’ And perhaps I’ll never get over wanting to do those comparisons. But in some ways, they are true. As a Fibro and CFS sufferer, you only get so much energy in the day. I spend it getting my husband out the door, caring for five cats and a dog, doing Pilates and making sure I get that 5K run in any chance I can get. She has different priorities, and thus spends her time doing yoga and caring for children.

I really try hard to keep that thought in mind when I do see someone who looks like they are handling their diseases a lot better than I am. I still consider myself to be in a bit of a learning phase with this disease. I’m trying to find my own pace, whether it is running, or figuring out what I can do after I get home from work. Sometimes I astonish myself. Other times, I make myself some sort of ‘nest’ where I can hide and rest for the evening because I just did too much.

And while I’m at it, the energy limits don’t just stop at physical ones. You have to find your pace when it comes to emotional energy, too. If you have a seriously stressful day at the office, you may not be able to get that extra cleaning in at home because you are just too mentally tired. Or you just can’t handle a commitment you had made previously and have to cancel. It happens.

What matters is that you do your best to find your pace, and keep it as well as you can. And after time, you will know your limits well enough to better understand when you are about to go over them. It’s all about taking the time to take care of yourself, which is the most important thing you can do.