I absolutely detest “click-bait” titles, but this one is really important for those of us who live on a heating pad to manage our pain. So please do read on.
Recently I found some dark lines on my back which had a branched pattern — like veins on a leaf. There were no other symptoms except a slight bit of a burning sensation in the area. However, much of the skin on my back, arms and chest is tender and sore all the time anyway, so I didn’t think much of it.
Turns out, it is most likely a relatively rare condition called Erythema ab igne (EAI), also known as hot water bottle rash or toasted skin syndrome. (Sounds appetizing, eh?) “Erythema” refers to the “redness” of the skin in the area that is due to chronic and prolonged heat exposure (“igne”: fire). This is how this condition starts off, and typically goes unnoticed, until the reticulate (fishnet-like) patterns of hyperpigmentation appear.
EAI occurs at temperatures that will not burn the skin (~43-47 degrees C) but can cause damage to the skin and the blood vessels immediately underneath it. Historically, it was seen among older people who would sit close to a fire, or among workers exposed to heat on a daily basis (e.g. metalworkers, bakers, etc.). Nowadays, it is mostly seen among chronic pain patients who repeatedly use heating pads for long periods of time. It is also often seen more in women than men, which I felt is worth mentioning because fibromyalgia also affects more women than men.
The only treatment option is to remove the source of heat immediately. And that is paramount, because while EAI is benign at first, if the offending heat source is not removed, it can progress over time to skin cancer! Just like chronic exposure to UV radiation can result in skin cancer, so can chronic exposure to infrared radiation (more commonly known as heat!).
The logic makes perfect sense, yet it feels like a nasty surprise nonetheless! I have been depending on my heating pad to be able to sit comfortably for some 3 years now. When I extolled its virtues for pain relief, I never knew it was damaging my skin (potentially irreversibly, depending on how far it has progressed).
Needless to say, this news did not make me happy. It feels critically unfair that one of the core pillars in my fibro management scheme is now being taken away from me. It feels like somebody’s idea of a very unfunny joke.
I also want to mention that there is another condition, called livedo reticularis, that looks similar to EAI, but may indicate more serious underlying disorders, such as lupus. But LR seems to typically show up as reddish fishnet-like pattern on the legs (and does not correspond with a patient history of heating pad use). Distinguishing between the two is very important, because one of the treatments for LR is application of heat to the affected area — the one thing you must avoid if it is EAI!
If you see such marks on your skin, please have it checked out by a doctor, preferably a dermatologist as many primary care physicians are not even aware of EAI. This happened at a really bad time for me, because I need to change my GP with a change in health insurance. (Isn’t healthcare in America a dream?!) I am hoping the next doctor (whom I am yet to find) will take me as seriously and treat me with as much compassion as the last one, and have me properly checked out by relevant specialists.
The bottomline of this post is, if you suffer from chronic pain and heat is a major source of relief, please be judicious when using a heating pad or hot water bottle. There are hidden dangers associated with their chronic use, like the development of EAI, that I had no idea about! I am not sure I can completely give them up yet, but I am definitely cutting back on their use. It does make sitting at work very uncomfortable, but I am horrified by the potential of these lesions turning malignant. If you depend on the heating pad as much as I do, I do hope you will be careful about how long you use it for, so you don’t entirely lose your source of relief in the long run due to EAI.
Seeing a flare to its end (or what I hope is the end anyway) is a feeling truly out of this world!
After being stuck in the tunnel for so long, to finally see some light at the end, is a delightful feeling.
Featured image: Creation, oil on 18X24″ canvas (available)
And yet I struggle with the thought that this is as good as it’s ever going to get. For everyone else, life expands, they incorporate more and more experiences as they move forward. And I am happy if it simply doesn’t contract any more! I move forward too, but always against the wind, and always aware of the limitations.
And yet, as a human being, we register differences in condition more than so than the absolute value of it. This means that despite all the limits placed on me, my instant reaction is one of pure joy, an expansion of consciousness, to realize that I am improving from a worse-off state. That what I am improving to is what most people would consider “lazying” bothers me only when I think about it in more intellectual terms, ignoring my emotional reaction to it.
I realize that my initial happiness is only dampened because I still compare my state to that of other healthy people my age. I compare it to what I used to be at one time, what I remember feeling like but haven’t felt like in a long time. But with a chronic condition like fibromyalgia, my world now spins at a different speed than it does for others my age, than it would have for me if I hadn’t developed this condition. It is not fair to compare apples to oranges.
I have learned to see that slowed spin rate on neutral terms — it has some good and some bad, just like there would have been had my world kept revolving faster. But sometimes I can’t help but feel that the existence of the difference itself is somehow mocking.
At one time, I thought I was closer to accepting my situation. And I was, but only under the circumstances I had grown comfortable in. As my circumstances changed, I realized I am on this journey anew.
Ever reaching for the light . . . thinking I feel its warmth . . . but then my world takes another spin, and I am back in the dim, reaching for the light again.
The painting in the featured image explores many of these emotions that expand through time and space. I am sure everyone has something they are struggling with, where they feel they are locked in a tunnel, and are forever reaching for the light. I think of that when I feel I am fighting an unfair battle, and try to not feel so alone in it. I try to think of the progress I am making, and remind myself to simply breathe.
Perhaps the important thing is not to win the battle, but simply to keep fighting it, and fighting it well. And all the while allowing yourself to feel the joy of small victories, however small they may be, just to feel like it’s not all in vain.
Each painting has a story, one that I strive to tell here. Since many of them have to do with my journey with fibromyalgia, a fraction of the sales from my paintings will go to the American Fibromyalgia Syndrome Association (AFSA), who fund research into this poorly understood condition. If the paintings and/or the cause touch your heart, as they do mine, please feel free to contact me here or through my Facebook page for more information. Thank you for accompanying me on this journey!
I feel like the last flare kind of put me in a less-than-positive state of mind. Too many of my posts are talking about hardships of living with a chronic condition. While I don’t mean to shy away from being honest, and I don’t believe in deluding myself with positivity when things could obviously be better, I do believe that our state of mind can affect the state of our bodies. Letting out the frustration of a prolonged flare is helpful, but remaining in that angry, frustrated mode does no one any good.
So I have been on a journey to try and reset my mind to be a in a quieter, more peaceful place. I have had varying levels of success with the strategies I used, and I am sharing my thoughts on them here in case it can help someone else in a similar boat.
1. Take time by the moments instead of days.
The idea here is to just get through this moment in time and on to the next, and not think any further forward or backward. I try to keep busy at work, and ignore my body as much as I can. I have also taken to spending my evenings resting completely (unless I go for my pool exercise class). Sometimes I may play a crossword with my husband. We have fun, we goof off, we laugh when we make up silly words; I seem to relax. Throughout the day, I try to keep my focus mainly on the task at hand.
For the most part, this strategy works. When taking time moment to moment, I seem to be alright.
. . . But then a thought will pop up in my head about the next day that’s about to come, and I feel this dread. Don’t get me wrong, it’s not that I mind my job, I really like it in fact. What I dread is the struggle that going to sleep might prove to be, or the exhaustion when I wake again the next day, or the achiness, the tiredness, the tightness in my muscles that will aggravate me throughout the day. I dread that I will come back home, and rest, and feel better, and then my body will hit its reset button the next morning, and the whole thing will start all over again. Like an endless cycle of rest, pain and exhaustion.
Taking time in moments stops me from thinking in the fashion above, but it also makes time feel disconnected. I feel like, as people, we thrive on some sort of continuity. That’s why we created the construct of “time” in the first place. When you take life one piece at a time, it is an effective coping mechanism because it gets you through the day. But for me, at some point, every moment seems to run into another, and it becomes hard to see where I have been and where I am going.
So even though this method works, I realized that is like putting a band-aid on wound that needs stitches. It might make you feel better and hide it from sight, but it probably won’t solve the problem. But for problems that can’t be solved, like the one I currently have I guess, this is still a useful strategy.
2. Reframe your mind to think of what you can do.
This one is hard for me because I associate fibromyalgia with so much loss. But I think it is important to note that there is still a lot that I can do that I don’t always think about. I don’t think about it because I expect to be able to do more, so I care less about what I still can. But perhaps I should not take all that for granted.
Perhaps it worth noting that regardless of how bad I felt, I could still take care of my husband after his surgery. I could take care of our home while working at the same time. I can still work! As a scientist, no less! I can still plan for a future, perhaps a house, or a vacation. I am still able to spend some time with friends when I like. None of it is easy, but I am still doing it. Regardless of how much patience I lose with myself, I am still coping with whatever life throws at me.
In a weird way, this makes me feel both proud and more confident, and also more humbled. Proud and confident that I am capable on taking on the current challenge. But also more humbled: just because you could do something, doesn’t mean that you should. I feel grateful that I didn’t collapse, only flared, when the workload soared. But at the first chance, I am also cutting back so as to not provoke providence by taking it for granted.
Altogether, I have found this to be a good exercise. When I feel poorly, my list is fairly short. But I try to add every mundane thing I could and try to convince myself to feel accomplished for being able to do it. It helps me feel like I have been somewhere, and can do some things, and can still plan for some kind of future.
3. Accept that it sucks.
Sometimes that’s all you can do. Just accept that this is a bad patch, and ride it out. No point in being angry about it or punishing yourself for what you cannot do. Do what you can to mitigate the flare, but recognize that sometimes it’s like the flu — you just have to wait it out. Admit the feelings and thoughts that invade the mind, find an acceptable outlet for them, and try to redirect them in more positive directions (see #1 and #2 for instance). Show yourself some compassion.
This one, for me, is by far the hardest, though I have been actively coaching myself for a while. I feel like I need to have the answers to all my problems. If I don’t have ready answers, I feel like I need to find them. But sometimes there is no answer. All you can do is accept this is how it is. Funny thing is, when I am able to do it, it brings me so much peace of mind! And yet I struggle with the idea that I am “giving in” to the flare. But it is not: I am still looking for ways to help myself feel better; I am just done fighting the the problem itself. The focus is now on me. Not the flare or the illness itself.
I have written extensively about acceptance before, and I will put the links below. It is probably the best way I have found of dealing with the emotional aspects of my condition. As you can see, however, it is not a goal you achieve and stay at. It’s a a never-ending journey on the road to peace.
Word of Warning: This is a rant/life update post that also makes something of a point. Other chronic illness fighters may relate to the point, and I hope “healthy” readers can appreciate it and maybe learn something from it!
So without much adieu, here’s the point, nice and early, so you don’t have to read till the end.
As my husband has been known to say, “thepoint is the point.”
OK, just kidding. No such luck! But if you stare hard enough at it, and then look away, you will see a square. I hope that makes up for the the last 20 seconds of your life reading a bad joke. No money back guarantee for the next 20 seconds if you don’t see the square, though.
For the last month or so, I seem to be hopping between flares. This last one has lasted a few weeks, replete with intractable pain and bone-crushing fatigue that is made worse by lack of sleep. That I come close to passing out unwanted (often at my work desk) but then struggle to sleep at night just feels like an unfunny joke my brain is playing on me.
Although my husband is much more mobile now, I am still taking care of some house chores. After a full week of work, I was feeling the lack of adequate rest on the weekends for a while. It’s a bit like I kept making automatic payments out of an already overdrawn bank account. Except here we are dealing with the biological currency – ATP – adenine triphosphate, aka, raw naked energy.
If you’ve ever overdrawn your account, you know the overdraft fees that apply. It’s money that you pay for not having money to pay with in the first place. Well, the Bank of ATP is no charity either. Pushing forth on empty just pushes you deeper into a hole that becomes harder and harder to come out of. That’s where I was when the weather flip-flopped rapidly. Without any energy left in savings to speak of, I went down almost as fast as the barometer.
(In a bizarre way, this flare makes me feel vindicated that I did not just stop partaking in the chores for material pleasure — it actually made physical sense for me to spend the weekends resting, and recharging the battery for the following week.)
Since I also just started my new job, I don’t exactly have an abundance of leave time or bargaining chips (or any really!) accumulated yet. That means I simply have to push through, even as I am struggling to stay sitting up. I am also starting work much earlier these days. That means forcing my body to move before it’s had a chance to thaw, thus using up more energy for the “wake up” routine than it otherwise would.
Kind of like the chicken you didn’t have time to thaw before dinner, and now it’s going to take extra power to cook from frozen.
Which, all, finally brings me to the point of this post:
All that about counting energy bars used for strenuous activities like “waking”, and struggling to breathe through the pain, and running while practically on empty, is what makes fibromyalgia a little more than just feeling a bit achy and tired.
I know a lot of people get achy when it’s rainy. Nobody likes waking up early after not getting a good night’s sleep. Everybody gets tired from time to time. And I know all of these people still do everything that I do, and maybe a dozen things more, and chalk it all up to “adulting” without a complaint.
So why can’t I? Because fibromyalgia is a bit more than just feeling a tad tired and achy sometimes. It’s feeling like that all the time. And I work through it too without most people even knowing I have a chronic pain condition.
But “achy” is not the same as the band of pain and muscle tightness and spasms that grip my chest and make every breath a struggle. And after having tasted quite a range of the pain menu (joint, muscle and nerve), I can safely say that the Iron Maiden — my most favorite metal and least favorite pain band [yes, the “band” pun was totally intended] — is the absolute pits.
That is a bit different from when someone is sore for a day or two from the weather or an especially hard exercise routine. They don’t have to brace for a major flare from ignored achiness, that might bring on new heights in pain sensation. The ache is the flare. It’s downhill from there.
In a fibro flare, on the other hand, I have been known to want to cry, but the fatigue is so all-encompassing that I realize it will take too much energy to cry. I have to save whatever is left of me to move my limbs and get through the day without passing out. A large part of what makes the flare worse is also poor sleep. What I once described to my doctor as an “all-body migraine” means I cannot get comfortable enough to sleep well, and lack of restful sleep in turn makes both the pain and the fatigue worse; and thence is triggered a vicious cycle.
Avoiding these kinds of flares that have the potential to floor you become of near-paramount importance in the management of a condition like FM. I have had to restructure my whole life, sometimes struggling to keep up with even the reduced pace, cutting back everywhere and on everything that I can, just to avoid these flares. I imagine people with chronic pain disorders know what I am talking about. But it is very hard to explain this to somebody who doesn’t see the struggle behind the shallow breaths, even when they otherwise know what being in pain feels like. They don’t have to worry about the localized pain turning into an all-over flare that literally affects every part of the body, everything from sore feet to a foggy head.
The centralized nature of this pain disorder also means that I never know where and when to expect an exacerbation of the pain. The back is a constant, so at least I know that’s a house guest who’s staying again today. But who else is coming to visit — and for how long? Is it going to be my arm? The wrist perhaps? Or maybe the knee, or the feet (are the ankles coming too?), or perhaps it’s going to be the thigh? Is the neck pain just from sleeping funny, or is this about to be a killer migraine? And how long will that last?
The uncertainty and unpredictability of pain due to a central sensitization disorder makes it very hard for people with only peripheral injury-related pain experience to understand or empathize with this kind of “achy”.
If you can expect a pain a certain way, it’s easier to take mitigating steps, which you know will work with some reliability. With centralized pain, you never know what to prepare for. And because you can’t be prepared for everything all the time, you are likely to be sometimes caught off guard. Like I know laying down helps me breathe again when the pain otherwise tightens the vise around my chest, but I cannot lay down at work.
And the fight it takes to keep sitting up when the pain is overpowering takes up more energy that I don’t have. I used to be a high-achieving student, so I know what “tired” feels like. I never dreamed it could be counting how many ATPs it took me to get out of bed this morning! Some days it takes more than others. So you can either plan your day accordingly, or, if you’re fresh out of choices, you go further into overdraft at the Bank of ATP. And then you feel the dire exhaustion that takes “tired” to the next level.
My friend describes it as being like a “zombie”. Well, it’s pretty accurate. I was alive and moving, but all the life juice was taken out of me, and I was just performing the motions. I felt like I might collapse into a bag of bones the minute I didn’t pay explicit attention to allocating the necessary resources to hold my body upright.
All of this constant daily struggling, peppered by knock-out flares, is why fibromyalgia is not just feeling “kinda tired” and “a bit achy” once in a while. That’s why, even when people are not trying to be belittling, I can only sigh when I hear things like, “you’re fine, everybody gets tired”, or “I didn’t feel like waking up this morning either”, or “yeah, this weather’s hard on everyone”. I appreciate that people often mean well, and are trying to be kind when they say those things. I just wish that before they said it, they had a small inkling of what we truly felt like.
Every day can be a struggle with a chronic illness. Even when my husband helped me with just about everything around the house, there were very few days when I didn’t feel the brunt of fibromyalgia in one way or another. Now, with him out of commission, I am feeling it even more.
I have previously written about how I managed grad school with fibromyalgia. And I am using many of the same strategies at my current job. But I have had to “rediscover” some tips to manage the daily chores in a way that eases my growing pain and fatigue now that I have to hold up the fort at home as well.
I have shared them here, hoping they may reach someone who might benefit from them.
1. Don’t be proud.(If living like a college student is a complete deal breaker for you, you might as well stop reading now!) Seriously though, many a time, it is our pride and expectations of how we should appear, how our house should look, how holidays should be conducted, that make life more difficult for us than they need to be. Try to let go of the allure of appearances, and worrying about how it looks to the neighbors. Focus only on what you need to do to get some semblance of your life back.
2. Prioritize. Start with doing the things that absolutely need doing that day (if that garbage is starting to stink, taking it out needs to be near the top of the list!). Jokes apart, with this general strategy, if you run out of energy before you finish your list, you can stop without too much concern. Let those less important things wait. Trust me, they’ll be waiting for you tomorrow. Unless your fairy godmother steps in and turns some mice into fairy-housekeepers who magically take care of the remaining chores for you! (If that happens, please give them my number!)
3. It’s OK to put off the optional activities if there’s only room for the mandatory. Sometimes the optional activities are the fun “me-time” things, like our hobbies. If so, consider replacing them with equally fun “non-activities” (binge watching Netflix, for example) that help you relax and find peace in a chaotic day. However, if you can move around some less important tasks to make room for that “me-time” activity, don’t pass up the chance!
Groceries and Meals
4. Frozen meat and vegetables.If you enjoy cooking, doing large batches once a week and freezing meals is a great idea. But, that does add to other “intensive” weekend chores, and may not be the right fit for everyone (certainly isn’t for a non-cook like me). So, I turn to frozen chicken, sausage, fish and vegetables. Many of them can be prepared within minutes in the oven, microwave or on stove-top, and they are really hard to mess up! With some careful label reading, portion control and balancing with other food groups, this is not a terribly unhealthy option either.
5. Snack healthy with fruits and nuts.This is easy for me because I love both, but they really are an excellent source of nutrients and perfect for between-meal snacking!
6. Meal delivery services (e.g. Uber Eats). When all else fails, and you simply haven’t the energy to do one more thing, meal delivery services can prevent you from starving. If available where you live, Uber Eats (or other delivery options) can be a life saver!
7. Online groceries. Several places like WalMart and Amazon (Amazon Fresh & Prime Pantry) are now allowing you to buy groceries online, and either picking them up at the store or delivering to your home. It cuts out much of the walking, reaching, bending, standing, etc. that can make grocery shopping hard on spoonies. I think Amazon is kind of expensive for this service, but I feel I am actually saving money buying a list of things I need online at WalMart and having them load the bags into my car at the store. It reduces impulsive buying because I just saw something cool at the store. Rather a neat “plus” for an already useful service!
8. Use wheels to transport groceries.A folding bag or basket on wheels (something like this, for example) can be very helpful so you don’t have to carry a heavy load of bags from your car to the home. It’s a bit more awkward to use if you have stairs to climb, but there are some “stair climbing” options too, like this one.
Hosting & Housekeeping
9. If hosting is too much trouble, take your friends out to eat.Don’t feel obligated to deal with the cleaning, decorations, table and meal preparations, and the subsequent clean-up, if that is not your thing and you know it will wipe you out. This also goes for the holidays; find creative alternative solutions so you can still spend quality time with friends and family, without tiring yourself out.
10. Make as few dirty dishes as possible. Don’t be too proud to use paper plates or just eat out of take-out boxes! Soak “adult” dishes/utensils (or use a dishwasher) for easier clean-up that requires less wrist and elbow grease.
11. Reduce frequency of housekeeping tasks. House cleaning once a week, or alternating between rooms and taking it easy might reduce how much energy is spent on a ritual task that can often take more time and energy than we anticipate (and leave us drained and hurting).
12. Focus on functionality over perfection.Practice the science of “good-enough.” That means the house may not be perfectly clean, the corners may remain dusty, actually a lot of things are probably dusty, but at least I can walk across my floor without the dirt and grit sticking to my bare foot! That’s good enough for me! My clothes are not neatly folded (in fact, if they are not hanging, they are lying in a “dump” on a shelf in my closet), but as long as I can still find what I need, I don’t bother fixing up the closet just to make it look pretty. It’s in a state of “working disorder,” which is good enough for me.
13. Break up tasks. If cleaning takes a lot out of you (as it does for me), try breaking up the different tasks on different days. Dust the books and shelves one day, vacuum or mop the other, clean the bathroom on a third. If a particular cleaning job takes more arm-power (cleaning the toilet or bathtub for example), do that on its own day when you take on fewer other intensive chores.
To be completely honest, these tips have not been enough to keep me from sliding into a flare. I have felt my symptoms worsen despite using the strategies above. However, I do feel they have made a difference. When every little bit seems to take a gargantuan effort, any bit of reprieve is appreciated.
I certainly don’t think I could manage to keep on taking care of my home as well as work full time forever, even using all the strategies I write about. But these tips have allowed me to successfully fulfill the temporary needs of my household, without needing to take at least 1-2 days off from work (that I have not even collected yet!) over a complete crash that pins me to the bed. Essentially, they have slowed my decline, and that was about all I could ask for!
So, if you or someone you know is in a similar spot, and is struggling with daily life as a fibromyalgiac, I hope these tips help them too — at least a little anyway. And if you are a fellow chronic illness warrior with more daily living tips of your own, I invite you to share them in the comments below, so others can benefit from them too!
Silence is to be able to contemplate the small, the tiny, the insignificant, and find the image of its beauty within yourself.
As much as that sounds like a quote from somebody famously enlightened, that just came from me. And I absolutely refuse to carry on the internet tradition of assigning fake quotes to famous names.
Besides, I truly mean it.
I clicked that photo yesterday, just as the sun was coming up on a rare snowy day in the Deep American South. I was enchanted by that flock of clover sticking up from the snow, like nothing could keep it down. It was intent on being a bright burst of color in the white landscape.
There was nobody else out that early, with the temperature in the frigid lower teens (-10°C, for those unfamiliar with the Fahrenheit scale). It was quiet and beautiful. Peacefully serene. I could hear myself think, and that is always a good feeling.
Yesterday wasn’t a particularly great day for me. The cold and frequent fluctuations in the weather had me achy at best, and spasming at worst. But that moment of tranquility, as the sun came up and reflected its colors on the snow, was one to cherish.
That moment was my own bright burst of color for the day. I could feel its beauty and peace. It was my private escape into silence.
That’s been a common refrain for me since I started a new job and my husband had to have emergency knee surgery. I know it sounds like an excuse when I say that about why I don’t have time to read, or to paint, or hang out with friends. They probably think it is an excuse too. But the one who used to take care of everything else so I could work and pursue my hobbies is now severely limited in what he can do. So it’s all on me now. I just hope that whenever I say that, nobody asks me what exactly is “on me now.”
Because the truth is that there nothing going on with me right now that hasn’t been going on forever in everybody else’s lives. But with a chronic illness like fibromyalgia which limits my daily energy levels, those same daily activities feel like they are draining the life out of me, when for everybody else they’re just mildly annoying chores that they mostly don’t even think about.
To say that daily living chores and a fairly physically non-taxing job is wearing me out, I imagine is eliciting eye rolls right now. Like I should stop whining and suck it up at adulting. I am embarrassed to even admit it; it makes me feel weak and stupid. But it is also a frustrating reality I cannot escape.
For a while, I was taking care of my husband’s personal care routine when he was mostly bedridden. I will spare you the grisly details; suffice to say it was nothing physically taxing for a normal healthy person. He mostly took care of himself, all I had to do was arrange his things where he could reach them, and clean up after him. But now that he can hobble about the house, I don’t even have to do that. He’s even taken over meal preparations again, so we don’t have to eat like freshman undergrads anymore! (If you’re wondering about that last statement – I’m a foodie who doesn’t cook, and seriously lucked out with a husband worthy of chefhood!)
The rest of the “lot [that is] going on right now” is just everyday stuff that for most people is mindless living. I wake up early, limp to the kitchen for coffee and breakfast, I get dressed and work a full-time job. On the weekends I clean the house, do the laundry and get groceries for the week.
Nothing at all that seems out of the ordinary! Everybody I know does all of that and more, and still finds time for friends, books, hobbies, and exercise.
And yet yours truly collapses every day after work, unable to even consider going for the evening exercise class. I look forward to the weekend when I could rest. But even with my “tips and tricks” to ease my load, the weekends often end up being worse than the weekdays.
Laundry, house cleaning, dish washing, all take more arm and leg work than one might imagine. And I don’t even do a particularly thorough job of any of it. The walking and frequent bending/reaching during grocery shopping has always been hard for me. So we switched to online groceries that we now simply pick up at the store. But carrying those home, putting them up, all eat up pieces of my energy pie. Some activities eat a larger slice than others, and at the end of the day, I am barely left with crumbs.
So I am left weathered every night either passing out in exhaustion or unable to sleep because of the pain and discomfort. I am nearly continually in a flare these days, rendered functional only by virtue of tramadol. And a cold I fought for a week did nothing to help that situation.
I am also left cringing in shameful embarrassment at how far my life and fitness has fallen. For a long time it seems I had stopped thinking about how much fibromyalgia intruded into my daily life. When my husband took care of practically everything, and encouraged me to save all my energy for things that bring me meaning, peace and happiness, he did it all so apparently effortlessly! He never made me feel indebted for all that he does. Though I was always grateful, I now have a renewed level of appreciation for him and for everything he did. In doing them, he was saving me massive slices of my energy pie, because all those activities that are nothing for him are seriously draining for me. But most of all, I am grateful that he did all of that without making me feel any the less for not being able to be functional like a “normal” person.
I know this post ended up being something of a rant, but sometimes cheer takes too much effort. My hope is that this post sheds some light on what everyday life can be for someone with a chronic illness like fibromyalgia. And if you are a “healthy” reader who has an invisible illness warrior in the family, I hope this helps you understand what a struggle just everyday living can be for them, and why sometimes they are unable to partake in things that take no effort on your part.
The last few weeks with my husband’s immobilized leg haven’t been all bad however. There have been silver linings and moments of reflection. I promise to write more about them in a later post.
I ran, and I ran, and I ran, until I could run no more. I was at the edge of a cliff, and the only way forward was down. The waves roared below but I had no choice. Down, down, down I went. I felt the ocean breeze spray my face. Yet I did not hit the rocks. That’s when I realized, I could fly!
In fantasy terms, that largely summarizes the last year or so of my life. After struggling with a bad fibromyalgia flare all of my last semester at graduate school, I was at the end of my tether. I realized I needed to take a break before continuing on to any new work in order to prevent a complete collapse.
It was a tough decision for me at the time. It had been nearly a decade since I was on any vacation longer than a few weeks. I was concerned that while my body might feel better during a period of sustained rest, my brain would feel “wasted” without any brainy-work to do. At the same time, I was facing a lot of judgement from my professors who were not privy to my physical problems, and were convinced the break would ruin any prospects of a career. I was also worried that without something substantial to occupy my mind, I may be too focused on the pain and feel the worse for it.
Not knowing how I was going to react to an indefinite period of unemployment, it was largely taking a leap of faith. But as it turned out, most of my worries never came to pass. And in the process, I even learned a thing or two about myself!
So here are five things I learned about myself when I stepped off a ledge into the dreaded unknown:
1. I can actually enjoy taking a complete break from work for a while!
It certainly took a while — at first I was just very stressed about not having a career direction — but then slowly, I was able to embrace the lack of all absolute obligations, deadlines and requirements! Instead of feeling wasted, as I feared I would, I felt more open. Once I got comfortable with not having anything particular to do, I felt my brain slowly creep out of its “lefty” mode and start spreading its wings! I felt more creative and free, and thoughts and ideas flowed in and out of my mind more easily. I loved the peace and quiet, the serenity of the guilt-free time to think and write. Now that all of my energy wasn’t spent working, I had more energy for other things (like, as silly as this might sound, washing my hair!).
2. It is impossible for me to be bored.
I know when I first floated the idea of the break, many well-meaning people thought I might get bored. I wondered about it too. But as it turns out, my mind is too full of things to ever be bored! I always have something going on in there — perhaps a new idea for a painting, or a blog post, or even a future book! Most of the time my mind is full of reflective, meditative thoughts about both the world inside of me and that which surrounds me. My home is practically a library, so I always have a stack of books I am working through next to my bed. My capacity for imagination may be endless when I choose to engage in it. And I am surrounded by both instant access to knowledge (thanks to the internet) and a mind that voraciously craves new and varied information about a diverse set of topics. So, as I learned, it is impossible for me to get bored as I am engaged in too many activities at any one time, even if I don’t move a limb!
3. I can get too inward-focused for my own good.
Truth be told, given a choice of living in the “outer” world and the “inner” world, I would choose the “inner” one any day. And as I got all comfortable living in that “inner” world last few months, I realized that is also a problem. As someone who has always suffered from social anxiety, it has taken me years of practice at being around people to learn how to function properly in the world. It is never comfortable, but it is an important life skill. Yet now, I seem to be using fibromyalgia as an excuse to get more and more away from the outside world and turn back inwards. Without any definite obligations to attend to, I feel especially free now to just give in to the regular ups and downs of the condition, and just stay in and recoil into my own world even more. This can begin to feel too comfortable after a while, something which, ironically enough, makes me quite uncomfortable! So I learned that I need things that push me against my instincts and challenge me, so life stays fresh, interesting, and even a little challenging all the time!
(Besides, neck strain from too much reading is contributing to some killer headaches last couple of weeks, so it is clearly time I got out and did something else!)
4. I am more OK with leaping into the unknown than I had thought I was!
When I was first offered my current job with the state government, I was not sure about it at all. I was afraid it will take me too far away from biology proper. But ultimately, after a lot of deliberation on other potential options, I decided to take the plunge. One of the things that appealed to me about the job was that I knew nothing of the specifics of what I was about to do! That was a good thing, because I did not know enough to know what to be stressed about! And I realized that I love this feeling of the “beginner’s mind” that can only be accessed when exploring the complete unknown. This is how I felt when I first walked into the research lab as an undergraduate that I eventually graduated with a Ph.D. from! I knew nothing about doing science, so I was eager to learn all I could. With an open mind, I was able to think about what I was learning without the restrictions that come with expertise. It was a feeling of freedom, of possibilities, of growth, and of accumulating life experiences — all of which I dearly cherish. Now I feel ready to inhabit the “beginner’s mind” once more. I have no real clue where this unexpected path will take me in the future, but I am in for the ride with an open mind.
5. I was ready for a major change.
After spending several years working as a bench biologist in academia, I will be a data scientist for a government agency. That is about as different as different can get, and I remain surprised the opportunity even came by me! But, I feel ready for it. I feel I am too young to cage myself into a narrow realm of possibilities. I had stayed long enough in academia to recognize the good, the bad and the ugly in it. It was time for me to explore a different setting now, a different field. My interests are too widespread to be constrained into the narrow niche that a standard academic career demands. So if I am going to play outside of the academic playbook, I would have to create my own paths into a non-standard career. I feel like this job out in left field is the first step in that direction.
For a fiercely analytical person, who likes to weigh the pros and cons of everything, taking a leap of faith can be very difficult. This was especially true of me in the case of my break from employment, because it conventionally bodes ill so early in one’s career. But at the time I had few other choices, and luckily, everything turned out just fine in the end! Plus I really appreciated having the time to exclusively manage the nasty flares that have gripped me most of this year. So I wanted to write this post not just as a future reminder to myself to not be so afraid of doing the crazy “unthinkable” thing, but also as an encouragement to anyone else who may be in a similar spot as I was back then.
If you’re feeling iffy about the jump but it’s edge of your cliff, close your eyes, and trust your wings.
Chronic illness transforms us in many ways. For thanksgiving, I chose to focus on the good ways that Fibromyalgia has transformed me, as I reminisced about my life in general.
Just a few years ago, I was a high-energy person with no time nor thought for anything but to get ahead in the world. Yet now, I am a much calmer, more “centered” soul who is reconnecting with her old timey loves.
Until I came down with fibro, it had been years since I had read purely for pleasure, though reading used to be my favorite hobby through much of my childhood! Always an inward-leaning and introspective child at my core, I incorporated my thoughts and feelings into my art (I did watercolors back then) as well as the poetry and fiction I would write for myself.
Later in middle school, I was the student reporter for the school-beat of the local daily, and contributed towards the school magazine in high school. I remember a particular editorial I once wrote about anxiety, depression and suicidal thoughts among students, and how the current education system in my country handled the issue poorly, not to mention the social taboo it was to even talk about it!
I lost touch with all of that once I got into college. Perhaps because of various new stresses and changes in my life at the time, I transformed into a much more “outward”-oriented person. I wanted to make the most of my experience in a new country, new environment; I wanted to soak up all the opportunities I suddenly had which I couldn’t have dreamed of before! Always an ambitious person, I finally saw the roads which could lead me to the success I sought! My definition of success was complicated; it definitely included job satisfaction and doing what I loved, but I also wanted money, position, autonomy, and a certain rank in the hierarchy of society. And I was going to work hard to make sure I did not waste the chances I was granted to attain it.
Though I am glad I got to chase my dreams and live that fast-paced life for several years, I am equally glad for being able to slow down as I developed fibromyalgia. Now I am finally able to reconnect with the pleasures of my childhood:
I am finally able to enjoy quiet moments reading at my leisure, or lost in thought as I write just for pleasure. I learned to paint in oils (one of my childhood dreams), and express my emotions through my paintings. (And that little rhyme was a nod to my childhood poetic musings, though I do little of that now.)
I am glad that even when I am stuck in bed, I can now find joy just watching the golden sunlight dancing on my walls, making patterns as the light passes through the blinds or filtered through the warm, fall-colored, translucent curtains.
I am glad that I am now able to delve more into photography and art, as I had always hoped to do more with those! There is something flighty and fun about stopping the car at random places to photograph a particularly beautiful purple leaf. Or simply walking around the park and admiring how the leaves on the shade-side of the maple turned red, but the light-side remained green. Or just finding a sudden glimmer of magic as the sunshine gleams through some colored leaves!
I gained all this and more as I let go of the person that I was before fibro!
And I am grateful for the opportunity to find a more authentic person hidden inside me, who is encouraged everyday to live a more authentic life, and all because of fibro!
Chronic illnesses bring with them a slew of disappointments, big and small. While it seems against the whole “stay positive” theme to admit that, ignoring disappointment under the guise of “positivity” is a bit like hiding an infected wound under a bandage — it may look clean and tidy on the outside, but it’s still festering inside. Therefore, we all need tactics to deal with those disappointments — actually treat that infected wound with antimicrobials — and do it with a positive attitude!
This past week, my physical state has led to some definite disappointments. I was down with a fibromyalgia flare and recurrent migraines for the entire week. It was one of those weeks where I was barely up from one assault before the next one knocked me back down. Each time I was expecting to feel better, and each time I was disappointed.
First came the piercing pain, the nausea, the occipital and trigeminal neuralgia, over several days. As the migraine abortives dulled those, other symptoms asserted in its place: a worsening of the gnawing pain in my legs, neck and back spasms, shooting pains along my spine, burning pains all across my back and arms. For a day or two, it was hard to even dress myself or comb my hair. Then when time and tramadol dulled those a bit, I realized I was in the grip of complete and utter fatigue. I was exhausted to where I was dizzy and eating, at times, was a difficult endeavor. Only by the end of the week did I see a pattern, and realize that I was in for an all-around fibromyalgia flare.
The result was that I missed all week’s worth of pool exercise classes (though I stayed continually optimistic about being able to go). I also missed the once-a-year outdoor art market that was held yesterday. I have no energy to get up to do anything at all, not even a bath. Needless to say I was fairly disappointed. Disappointed that I “wasted” a week in bed, disappointed that I have no energy to pursue my painting aspirations, disappointed to have missed the art market that I was looking forward to for months!
Unfortunately, weeks like this are not uncommon for me. They have caused me much agony in the past. At first, I would push through regardless. Then later, as that stopped being an option, I would be reduced to tears, wondering if my life will now forever be at the mercy of my condition. Then one day I realized that while many things may indeed now be affected by fibromyalgia, one thing I do have some control over is how I react to it. Having sparred with the “dark side” before, I knew I had the power to “unsink” myself. Therefore, in order to keep my chin up while dealing with such disappointments as my own body has proven to be, I developed a few practical tools.
The three main tools in my “coping with disappointment” toolkit are:
1.Finding an alternative that’s equally appealing
One of the most disappointing things about being down with a chronic illness is thinking of all the things you missed. Chief among those last week was the art market I really wanted to go to but really didn’t feel up to. I have also been hoping to start painting more since last weekend, which has not yet happened. So instead, I decided to engage in other painting-related activities that I could do from bed:
I worked on my new Etsy shop, listing new paintings on there regularly.
I tried creating fancy displays for my paintings with a new app I downloaded, and have been sharing them on my Facebook and Instagram art pages.
And last but not the least, I am sharing my artwork through the blog posts I am writing!
There have been other “alternatives” in my toolkit too, like writing/blogging, reading* and marathoning through Stranger Things and Anne with an E.
The result was a week where I was in pain and discomfort (I won’t sugar-coat it), but I kept myself “active” from bed, engaging in things that made me happy! The week was not what I wanted it to be, but it was enjoyable in its own right, making it hard to be too disappointed by it.
2.Listing the recent good times
When dearly-held plans get trashed, when life disappoints you, it is easy to feel like your whole world is nothing but a dark dreary mess. I can’t definitively prove it, but I have it on good authority that time moves slower when you are in pain! So it is no surprise that it feels like the low point lasts forever. But the objective truth is that the sun has not been and will not be behind the clouds forever. It was out once before, and it will be again. And even while it’s hidden, there are some silver linings!
One of the ways I remind myself of this is by listing the good times I have had recently:
Mini art vacation last month
Haunted house on Halloween
Shopping (for office-wear for my new job)
That’s right, I got a new full-time job! It is with the state as an environmental health scientist.
When you list all your fun times like this (even if you were in pain during some those times, or crashed afterwards — which I did), you realize that all is not dark and gloomy with your world. Life is not all that disappointing as it might seem right now.
3.Showing yourself some self-compassion
Whether or not anything in the toolkit helps you feel better, it’s always good to show yourself a bit of compassion regardless. The idea of self-compassion is to treat yourself like you would treat a good friend. Be kind to yourself as you would to a friend.
This one in particular is a work in progress for me. When I feel like I am “wasting” my time in bed, I try to remind myself that resting when I feel down and out is hardly “wasting” time! In fact, it is the only thing to do! I am being more efficient with my time by recharging when needed; if I kept pushing through, I would only prolong the flare and be less productive for longer.
So don’t berate yourself for the rest you need. Try not to begrudge a bit of comfort eating, or the pleasures of binge-watching Netflix shows. Or give yourself time to weep, if you so feel; allow yourself the space to be unhappy. Disappointments lose a lot of their edge after you have just allowed the wave to wash over you like a tide. Every tide eventually ebbs.
Though I placed a lot of the examples of my tools in context of this past week, all of these work for much bigger disappointments as well — such as the mega-disappointment of dealing with a chronic illness in the first place.
For example, my new job as an environmental health scientist with the state government is one of those “equally exciting alternatives” to my plans in academia! And if I think back to all the years that I was in high school and college, the years I spent doing the science I loved, the time I spent in the company of colleagues and friends I loved, those are some very good times indeed! My life has been worthwhile through storms I have weathered before I developed fibromyalgia, and will continue to be so as I weather this one as well. And as for self-compassion, that’s a worthy attainment regardless of whether you are ill, but especially if you are chronically and invisibly ill. When the world misunderstands and mistreats you, you may be the only one showing yourself some much-needed kindness.
I hope that my toolkit give you ideas to develop your own tools to fight the disappointments that a chronic illness might bestow upon you. And if you’re a veteran chronic illness warrior with some tools of your own, I invite you to share them below so others reaching this blog may benefit from your experiences as well!
*If you’re curious regarding what I am reading at the moment, it is Martha Mason’s autobiography “Breath,” where she talks about how she lived a fulfilling life of over 70 years, ~60 of which were spent in an iron lung following a childhood bout of polio. In fact, the idea for this topic on how I deal with (far lesser) disappointments came from my musings of this book!
Each painting has a story, one that I strive to tell here. Since many of them have to do with my journey with fibromyalgia, 20% of all yearly sales income from my paintings will go to the American Fibromyalgia Syndrome Association (AFSA), who fund research into this poorly understood condition. If the paintings and/or the cause touch your heart, as they do mine, please feel free to contact me through my Facebook page for more information. Thank you for accompanying me on this journey!