Fibromyalgia is not “just” feeling achy and tired

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. Point

As my husband has been known to say, “the point 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.

Sleep_PHDcomics

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.

ATP_overdrawn

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:

IMG_2001 (2)
And it’s a bloody big one too!
(or as “bloody” and “big” as the 2018 super blue blood moon ever got for me anyway)

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.

Created with Microsoft Fresh Paint
It’s really amazing how much easier it is to fight the rest of me once I can BREATHE again!

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.

Sleep
The reasons for staying up may not be the same, but as usual, Jorge Cham got the sentiment of the vicious cycle pretty right in this PHD comic!

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?

FMS
A snapshot from a video by open.osmosis.org explaining fibromyalgia as a central sensitization disorder (i.e., stemming from issues in the brain)

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.

Created with Microsoft Fresh Paint
It’s a great exercise in mindfulness — paying attention to holding your body up — but I really don’t recommend it.

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.

Love,

Fibronacci

Traveling with Fibromyalgia

Last December was the first time I traveled internationally since developing fibromyalgia. It was over 30 hours of journeying each way. Naturally I was very nervous right before, not knowing how my body would react to that. After reading up on other people’s experiences a bit, I applied a few tactics to make the journey a little less uncomfortable. And much to my surprise, they largely worked! So I thought I will share a few things that I found helpful for me, in case anybody else could use them too!

Here are the top 5 things that helped me travel with fibromyalgia:

#1. Zolpidem (Ambien): This is a non-benzo sedative used to treat insomnia. It really helped me sleep on the plane – something I could never otherwise do! In the past, two days without sleep was tolerable. But with FM, in my experience so far, that would have meant a serious flare by the time I reached my destination. And this helped mitigate that. As a plus, it helped with the jetlag, and surprisingly enough, it seems to have improved my overall FM symptoms too! I am not sure if the overall improvement is due to its action on altering sleep patterns or brain chemical modulation, but I am not complaining!

#2. Icy Hot Patches and ThermaCare HeatWraps: The Icy Hot patches on the upper back helped with the spasms I frequently have there, and the lower back ThermaCare HeatWrap was really helpful in making the long periods of sitting less uncomfortable. It emulated the heating pad I use on my chair at work to minimize lower back pain when I am sitting for a long(ish) while. The heating “pads” activate upon opening the packaging (exposure to air), can be easily inserted into pockets in the back brace-like belt, last for over 12 hours, and can be disposed off in regular trash. This makes them super handy on those 30+ hours of travel! Also, they did not beep when I forgot to take it off one time when walking through the security metal detector!

#3. Arm Braces: I found these very supportive when grabbing or pulling my suitcases. They seemed to offer a bit more stability to my forearm and helped minimize the pain in my wrists/inner forearm.

#4. Long Layovers: Long layovers mean less rushing. I could walk slower, sit for a bit in between if I wanted, or stand on the moving walkways instead of walking on them. This was a lifesaver for me, as my general walking speed has already slowed down quite a bit since developing FM, and I found myself further slowed by aching, swollen feet from ~10 hours of sitting in a flight! Not having to rush prevented a worsening of the leg ache.

#5. Aisle Seat: Aisle seats have always been my preference, so I can have easy access out of my seat. I could get up as frequently as I liked to move about or stretch a little. Of course, these were luxuries in the past. Now, they were necessities if I was to avoid a major flare. (And I am proud to say that I mostly did!)

I have read some people suggest rest breaks in airports at lounges or spas. That sounds like an excellent idea too, but unfortunately, nothing I have ever been able to afford yet. Tramadol was helpful too, and I have to admit it was needful despite the above measures. However, I do believe that the measures I described above reduced how much painkiller I would have otherwise had to take.

This travel experience was an important one for me. After managing it successfully, I could feel my floundering confidence levels regarding travel, and my ability to handle my condition, improve by leaps and bounds! Traveling was always important to me, and something I enjoyed doing. It hurt me when I felt that fibromyalgia might steal that joy away from me. But now, after making a successful journey halfway around the world, I am finally feeling like I might have my life at least a little bit back under my control, that I can still do the things I love, and manage my health successfully as I do it. And that is a wonderful feeling, for I haven’t felt that kind of hope in a long long time!

I wish all my dear readers a very happy, healthy and hopeful new year 2017!

Love,

Fibronacci

Coping with Chronic Fatigue

Until my last post, it had been a while since I was able to attend to my blog. Part of this was because I have been busy at the lab with an experiment schedule that took up even most weekends. The result of that has been a resurgence of my chronic fatigue problems.

However, as a graduate student, I am unable to give in to the FM fatigue completely (as much as I would like to!), and have had to find ways to cope with it at least partially.

So, today, as I lie on my bed unable to do much except go to the bathroom, I thought about writing about some of my fatigue-coping strategies.

Featured image: Good Morning (6X6, oil on canvas)

No, the irony of the topic of this post, nor its featured image, does not escape me – in fact, the irony is what spurs me on!

Here are the TOP 5 things that helped me cope with Fibromyalgia-associated fatigue:

#1. Muscle relaxers: This might sound counter-intuitive, but it turns out a large part of the fatigue in fibromyalgiacs may be due to extreme muscle tension. I found an increased muscle relaxer dose immensely helpful when struggling with deep fatigue over the summer. The pills could not make it go away 100% but I welcomed anything that made my life a tad more liveable! (If that sounds depressing, it’s because I was for most of the summer until I found some relief in these medicines.)

To be honest, my doctor and I talked about going the Adderall (low-dose amphetamine) route, instead of more muscle relaxers; but I felt my fatigue was largely due to poor sleep, and we hoped the muscle relaxer could have a double-effect on the muscle tension as well as lack of sleep. Besides I was secretly afraid that Adderall would only encourage me to overexert beyond what my body could naturally handle, eventually leading to a worse crash than otherwise. But if you think Adderall is something that might benefit you, read up on it and talk with your doctor about it!

#2. Rest: Good sleep is paramount for fatigue management. Unfortunately, it is also notoriously hard to come by! I found that the better-sleep effect of muscle relaxers wore off after a while. I have used a few other tactics – I might do a separate post about them later – but even they have worked only inconsistently. Here, however, by rest I simply mean to emphasize that you deserve some DOWN time!

Some days you just gotta allow those cells to die on the petri dish if you are not up to attending to them. You have to choose who is more important – the cells or you! (I know, some days, the cells are more important, but not when you REALLY need the down time to avoid a complete and total mental/physical breakdown.)

Other times, a little afternoon rest time at the office might be in order. I have put an ~2 ft. high styrofoam box under my table, with a blanket, along with a pillow and a heating pad against my back on the chair. This makes a makeshift recliner for when I just need to put my feet up! It also works for times when I am so tired I simply pass out at my desk!

#3. Move slowly and reduce stressful activities: This really just boils down to energy-conservation! If I move slowly, I expend less energy on the movement itself, so I can focus more energy on whatever it is I was moving in order to do!

Standing, walking, sitting for relatively long periods of time – even bathing! – are all tiring for me. So I keep those to a minimum as much as I can. I try to find a seat, or drive/take the bus to school (which is ~20 minutes walk from my home), and use a heating pad when sitting at my desk to reduce the pain and stiffness. As for bathing, I use a stool that fits in my tub, so I can sit instead of having to stand while showering; and I let my husband wash my hair once a week, instead of doing it myself more often. Luckily, I stay indoors most of the time, in climate-controlled conditions, so I am not as gross as you might think!

#4. Gentle exercise: This might be another counter-intuitive one, but gentle exercises in a warm-water pool have definitely made an impact on my endurance levels. Though I am often tired right after, in the long term it has helped me pull through the days better than before. This trend may not be true for CFS patients, but is certainly supported by the scientific literature for FM! Also, exercise may be the only thing that targets the root cause of the pain/fatigue in the central nervous system through the alteration of pain pathways.

#5. “Energifying” drinks, like coconut water and coffee/tea: I imagine the coconut water may help because of the electrolytes (my EP says the magnesium and potassium are important for reducing muscle tension and fatigue) and/or the sugar in it. However, it has less sugar than traditional sports drinks, and tastes better than water, so it is often my go-to drink. As a bonus, it also often helps with my nausea! As for coffee/tea, I definitely need some of it to kickstart my day, or add a little pep to my afternoon, but a ton of caffeine does little to curb chronic fatigue.

Finally, I want to make a case for a balanced diet. A balanced diet with proteins and veggies is less likely to lead to an insulin-related energy crash than a carbs-rich diet. As such, I have tried to add more fruits and veggies to my meals. We also only try to buy basmati rice, which has a lower glycemic index and causes less of a “sugar-high” (followed by a “sugar-low”) compared to other types of rice. I am not sensitive to gluten, but if you are, that is something else to consider as well.

The balanced diet did not feature in my “top 5,” because I am not sure my diet changes have made any difference in my fatigue. That is consistent with the prevalent thought that fatigue in FM and CFS patients may be more centrally regulated than diet-related. That being said, diet-related energy lows could likely add to the pre-existing fatigue in some FM/CFS patients. So the diet may be worthwhile a consideration, along with my “top 5”, if you are struggling with chronic fatigue.

Love,

Fibronacci

P.S.: “Energifying” = the fibro-fog word for “energizing”! This just occurred to me a good 30 minutes after publishing the post, but I like that word, so I am going to let it stay!

Divine Retribution

Monday

Summer was officially at an end. I was consumed by a feeling of how little I had accomplished over the last 3-4 months.

I felt I was becoming lazy, and too used to being “comfortable.” Grad students aren’t meant to comfortable! So what if I felt tired? Graduate school is notorious for sleepless nights! Yes I was always achy, but my pain is not that bad! I should be able to push through the tiredness and the pain. Enough with “babying” myself. Mind over body, I told myself. I could do this if I really put my mind to it.

I know this kind of thinking is stupid! But at the time I wasn’t thinking straight:

I spent practically all summer in a never-ending flare, basically at a new sub-normal, and I was frustrated with it. I had just begun to figure out my new normal, but before I could even settle down, I was forced another level down. The pain has been so deep and constant that I often don’t even realize how much pain I have been battling until the shroud lifts for a moment.

My life felt out of balance and I was having to figure everything out anew, and I was tired of it. I was tired of being on the roller-coaster. And in my mental fatigue, I was beginning to doubt myself and my own feelings regarding my health. I was beginning to wonder if it was all in my head, if I was essentially making it up – and if so, maybe I’d be better off just ignoring the assertions my body was making, and eventually I might snap out of it!

I doubt I truly meant to be as cruel to myself as I was. It was a moment of weakness when I gave in to my own personal critic. Left alone, it would have been forgotten in a few weeks as I regained my mental balance. But spiteful words released into the ether rarely dissipate on their own. And this time, they were picked up by the wind and heard by the universe. Loud and clear.

Tuesday-Wednesday

I stuck to my vow to try to push myself just a bit more – I shortened my rest time after PT on Wednesday, and tried to go to work early. I drank more coffee to stave off the sleepiness that almost always engulfs me afterwards. It sort of worked. I was beginning to feel that I could do this!

Wednesday afternoon

I had noticed the traffic was unusually heavy that day. This remained the case the whole afternoon, even when I went to pick up my husband from work. And got even worse as I tried to make my way back to the lab. I was beginning to get seriously achy and tired by now.

This might not sound like much for a normal person, but sitting for long periods of time is extremely painful for me. And when I am driving, it takes up extra pieces of my energy pie in addition to just sitting. And now after exercising and spending several hours on the road, every minute that my foot pressed the brake, I could feel my back breaking. Not to mention, every thing took three times as long because we were moving at snail’s pace!

It was 10 PM when I finally got home. I was now out and about for over 12 hours. Needless to say, I was practically dead.

Thursday

Despite the “resolution,” I decided to take it kindly on myself that morning. I limped into work by noon. My boss must have noticed my tardiness, because he made some snarky comment implying my ineptitude.

Friday

I did not feel too bad most of the day. I thought the extra rest the morning before had done the trick! I drank extra coffee again, and reduced the after-PT rest time so I could go back to work sooner. I thought this was working out pretty OK so far, and I wasn’t really even pushing that much! Essentially, I thought I had gotten away with it!

That night, my husband suggested going out to eat. I did not resist the suggestion at first, but felt very put off by the crowd at a couple of the places we drove past. We settled for Chinese take-out, and got our favorite. After a couple of bites of the “amazing chicken,” it hit me.

I felt a swoon come over me, followed by rush of nausea. I suddenly felt I had sprinted a marathon, and needed to throw up – out of exhaustion – at the finish line. I couldn’t finish eating and needed to lie down immediately.

Yes, I had crashed. I should have known it was coming, but I had thought (hoped!) that I had gotten away with it.

I hadn’t.

Saturday-Sunday

All throughout the weekend, I continued to feel like a train had run over me; and then once the gates lifted, every car that was stopped behind the tracks for a mile, also ran over me one after the other.

For large parts of it, I could barely get up from bed to even use the bathroom. I have no appetite. The fatigue still has me by the throat. I have never had chemotherapy, so I cannot be sure – but I think this must be what chemo-exhaustion feels like.

Divine retribution for my stupid, stupid thinking!

Mind over body is all well and good, but the body always has the last say. The exhaustion that comes with a chronic illness is not like regular tiredness. And the pain of fibromyalgia is not like just getting random aches and pains. One does well to always remember that!

Love,

Fibronacci

Featured painting: Dream Passage (8X10, oil on canvas)

Getting Honest about Chronic Pain – Part II

Fibromyalgia is like being in an abusive relationship. You are forced to share your life with a beast that throws all kinds of punches at you until you are battered and bruised. You feel isolated, and like you cannot get out – trapped and doomed. Every now and then, it lets up a little, and you think you can have a stable relationship that is perhaps not ideal, but tolerable. But then it comes back with double the force and knocks you back down again. Eventually you realize that you will never be able to have a fully stable relationship, and you live under the fear of the next pain storm. Slowly, the fear creeps into your very being, and kills you from the inside – while this whole time, outwardly, you look perfectly fine.

Chronic pain doesn’t just screw your body up, it also messes with the mind. Regardless of how much I believe in positive thinking, it is hard for me to keep a cheery face and be positive all the time. It’s hard to keep that chin up always when you are at the mercy of something as unpredictable and changeable as the weather. I am afraid to hope for anything now, especially the future. And it doesn’t help that I feel disconnected from my past.

I believe that everybody has their place in the world, in terms of what contribution they could make to it. For me, that was science. It was a job I loved, and I put my heart and soul into it. But now, becoming a “respectable” scientist feels like a distant hope to me.

If fibromyalgia had struck me twenty years from now, when I was an established professor, I may not have been so frustrated regarding my career, because I would have had others to do the hard labor for me. But it struck me at a time when I am expected to put in long hours and work hard and work fast. So now that I cannot perform at the level that I am expected to, I have been practically disowned. Even my boss of five years – who once praised my enthusiasm for science, saw how hard I worked for little to no pay, and admired my work ethic – told me he wouldn’t hire me in my current position. This is despite the fact that I am trying to make up for less work time with better efficiency and task delegation. (I guess I can kiss any hopes of a good recommendation letter goodbye!) It is clear that science (at least, academia as I know it) has no place for slowed-down cripples like me.

I know I can find other ways to contribute with my science training, but my self-confidence has taken a serious beating since I haven’t been able to stay out of bed longer than few hours each day. At one time, I felt I could touch the stars if I wanted to and worked hard enough to get there. Now I feel like I’d just burn my hands if I tried. I don’t know what I am even capable of anymore. In many ways, I feel like I am losing my mind and important pieces of my identity.

Most days I am able to pick up the pieces and move on to forge new paths for myself. But on days when I am both physically and mentally exhausted, I feel like I do not have it in me to carry the burden and just keep trudging. Sometimes I just feel like stopping in my tracks and weeping – allowing myself to feel the loss of a life that could have been. And other times, I simply struggle to stay afloat when I feel everything around me is sinking.

On that note, I am desperately grateful to have a real person to share my life with who can be the sole reason that I fight through the storm to stay afloat. When I am getting beat up by fibromyalgia, the invisible brute in our lives, my husband is always there to tend to the wounds. Some days I feel guilty for perhaps not being a good enough wife to him (though he always insists that I am more than he could ever have asked for). And that guilt, which is nothing but a sullying mark on a beautiful thing, is also a reality of living with chronic pain. As is his feeling of helplessness at not being able to do enough to help me in practical ways.

Yet, chronic pain is also what brought us closer together in a very special way. So in many ways, I am thankful to fibromyalgia for that. And that – finding reasons to be thankful for the thing that ruined the life you dreamed of – that too, is a reality of keeping afloat with chronic pain.

Love,

Fibronacci

 

Getting Honest about Chronic Pain – Part I

I often struggle to explain what chronic pain really feels like. Yesterday, my husband came up with this wonderful analogy for me, from everything I have talked to him about. I think this works, as long as the reader is a person who hates the feeling of wet shoes/feet as much as we do!

Chronic pain is like going through school everyday with wet socks and shoes, like if you had to walk through a puddle on the way. So you are forced to walk all day everyday in those squeaky shoes that embarrassingly spout water out the front, while your feet feel soggy and icky. After a while, you stop noticing the wetness, but you know they are still wet because you squeak when you walk and the water still comes out the front of your shoes. You look at your feet – and they look an unhealthy shade of pale, the skin all wrinkly from being soaked all day, and you have that soggy, icky, wet smell about you. After a few days, you will probably start developing some nasty foot fungus from never being dry. All you want is one day with dry feet. But you know the next day on your way to school, you will have to walk through that puddle again.

b4ppri

That wrinkly, unhealthy, icky hypothetical foot has been me, recently, as I have been flaring nearly every day for several weeks. The gnawing pain has been so ingrained that I am not even sure I can put a number on it. The exhaustion when I crash could be mistaken for the smell of death upon me. All I want to do is curl up in my snail-ball of tears, let out the pain, frustration and anguish over losing so much that was dear to me to this unending beast. But crying takes some serious energy – energy that I don’t have to spare. The only way I can describe my existence is that it’s like I have a massive worm that is inside of me, and it is eating me alive from the inside – body, mind and soul.

Pain is always a part of life. But when the pain is acute and lasts for a short amount of time, it means something when one goes “ouch” from time to time. I feel like I don’t even have that luxury now. If I had to vocalize my pain now, it would be a long low “ow” moan that is a never-ending background score, with occasionally louder higher-pitched “ouch-es”. But that would also take way more energy than what I have to spare. So I settle for contorted faces and/or unhappy cat moans when things feel out of the new-ordinary.

40f

Though fibromyalgia has given me the unique ability to empathize with others when they are in pain, sometimes I cannot help but feel some envy towards those whose pain will eventually heal and pass. People can sympathize with them when they voice their pain because it is an isolated/recurrent but brief event in their lives. In a few days/weeks, they will feel better and go back to being normal. Their energy level is often also largely unaffected throughout the episode.

But with a chronic illness, people eventually tire of hearing your painful notes and you never go back to being normal. When the energy flags, it is hard to explain why you cannot pop a couple more pain pills and be on the go; because you have been on pain pills while you have been going, and now this is the end of the line for you. At best, people are awkward around you when you express your pain or fatigue. At worst, they openly criticize you or blame you for faking it. So those with chronic pain end up internalizing it, and further isolating themselves in the prison that is their body and brain.

At least I am lucky in that I am not completely isolated. I have friends who are kind to me. Perhaps some can even take a stab at what I might be going through from time to time. I am eternally grateful for a husband who I feel lives inside my head, so he knows exactly how I feel. He tirelessly cares for me, listens to me, and his support is everything I am rebuilding my life on.

What I am rebuilding my life into, however, I am not sure. And I am also not sure I have totally escaped my own mental prison. Those are perhaps the subtler, more indirect effects of chronic pain. More on that in Part II!

Gentle hugs,

Fibronacci


 

Tired yet Sleepless

Being tired and yet unable to sleep has got to be one of the most frustrating feelings in the world!

For some reason, my mind is racing today – nowhere in particular, and everywhere all at once – which makes it really hard to “turn off” and fall asleep. Then as I lie awake at night, I go over every event of the day, sometimes events that happened many days ago, and overthink them to a point where it causes me anxiety. It is amazing how I manage to automatically hit on anything that might be even slightly tinted with negativity for this activity. Somehow the positive thoughts feel harder to latch on to. At that point, I usually realize what is going on, and try to stop myself. But once I start down that path, it becomes painfully difficult to stop. I know this is fruitless and and is likely to do me more harm than good – and that leads to further anxiety about not being able to control my anxiety, or go to sleep, which in turn, makes it even harder to go to sleep. Boy, is that the definition of a vicious cycle!

Sometimes I manage to break that vicious cycle by getting up and doing something for a little while (other than trying to go to sleep). Putting my mind on something other than “empty thinking” can sometimes stop the anxiety from rising to the point of panic attacks. Later I might try some delta wave isochronic tones or a sleep meditation/hypnosis audiotrack by Michael Sealy. While both have worked in the past, neither very consistently. I have had kind of the same luck with the sleep-related medication that I’ve tried. So it is a bit of gamble every night as to what it’s going to be.

As for now, I am starting to feel a tad drowsy again, so maybe I will give sleep another try. I leave you with my painting in the featured image, titled “The City Never Sleeps” (12X12, oil on canvas), hoping that YOU do!

Love,

Fibronacci

When you Keep Hitting a Rock

Sometimes it is hard to feel like you are making any progress at all, no matter how hard you try. Every time I think I have something figured out, it turns out that I had missed taking something else into account, so I am really back to square one. You would think as a scientist, I would be more accepting of failure and be able to gallantly pick up the pieces and move on and try again. But here’s a little secret about our lot – we’re human too!

I have heard it told many times that grad school can be a hard and uncertain place. To be honest, I had never really thought of it that way. I had entered my current lab as an undergraduate and dove right into the research because I found it fun and interesting. Over time, I had worked on many different projects and enjoyed learning about a variety of topics and many different techniques. I never really worried too much about “what’s next” because I always assumed I am going to continue having fun the way I am now, though perhaps in a different location and doing different things.

Yet now, I feel rather uncertain as I edge into my final year. My life has been in a flux recently and I feel like I cannot devote as much time as I should be towards my research. I have several publications but much of that work was done before I developed fibromyalgia. There is no way I can keep up that level of productivity with my current hours. I cannot imagine who would want to give me a postdoc job (something I had always banked on) and so I am having to look towards other directions for jobs for recent Ph.D.s. That is an scary outfield period for anyone trained only to find a job in academia; it is doubly hard for somebody who is also juggling a chronic illness and wondering whether the job description will fit their needs, when and how to disclose their problem, what types of accommodations to ask for and when and how, etc. Somewhere in the back of my mind though, I am still hoping I can do a postdoc with an advisor who will be willing to let me work at my pace, so I don’t have to jeopardize my health for my career – something I am convinced is totally NOT worth it! But my hopes are low on that one.

On the health front, I feel like I am shooting completely in the dark. Every time I hit or miss, I take a note of that and make a mental map of the place that I am in. Trouble is, I am never quite in the same place and a target I hit once may never get hit again. I try the scientific method when deciding what works and what doesn’t, or what may be the best approaches to tackle a flare with, based on published literature and personal experiences. But keeping an objective view of yourself as the subject while also being the observing scientist is hard on the best of days. It is made doubly difficult when your brain goes foggy and a storm descends on your senses.

All of this brings me to the featured image, my 11X14 oil painting titled “Inner Turmoil.” I painted it some time ago when I felt like the wave that is doomed to crash on the rock surface on a dark and stormy night, yet one that insists on doing it with flare!

Along with portraying thoughts I could not put in words at the time, it also made me ask the quintessential question of why the wave doesn’t give up. I suppose the simple answer is that it simply cannot! It is not its own boss, it is governed by the gravitational forces of the earth and moon. And I think we are all somewhat like that. There is a part of us that stops us from ever giving up. Graduate students and chronic illness fighters are both known to be a resilient lot. We have to be I suppose! And so we keep chugging along and keep hitting that rock, chipping away at it a little at a time, hoping that one day we will be able to wear it down and flow masterfully over it.

Love,

Fibronacci

P.S. A huge thank you to my dear friend S.G.B. for providing a lovely home to my painting. I hope the painting sings for her the same tune of resilience in the face of all odds as it is does for me.

 

The Whirlwind in My Brain

Most of us with chronic illnesses have our own coping mechanisms. I rely heavily on visual imagery, meditation and art therapy. And they are not all exclusive of each other.

Case in point: the featured image. This is one of my original oils on a 11X14 canvas, titled “In the Darkest Hour Before Dawn.”

The image came to me as I was trying to meditate and visualize my feelings of pain, loss of control, exhaustion, frustration and a desire for peace. Being able to paint it later (much later!) felt almost like a release! It can be so difficult to focus when the pain is overpowering you, kind of like you are stuck in a whirlwind that is inside your brain. Being able to make a tangible image out of it felt oddly empowering.

Love,

Fibronacci

P.S. Just for full disclosure, I am hugely inspired Vincent Van Gogh!

What does it feel like to have fibromyalgia?

I will have several future posts describing the mental/emotional aspects of living with fibromyalgia, so I am only going to focus on the physical part of it here. Unlike many other illnesses with physical symptoms, you cannot see the physical pain for a fibromyalgiac (yes, I just made that word up) since it is in the class of what are known as “invisible illnesses.” So I will try and make it a little bit more visible to those lucky enough to not know what it’s like first-hand.

This is a big move for me because I am a very private person and generally hate to bother others with my problems. But there are too many people like me and not enough awareness regarding what we are facing. So here goes.

Judy Garland, Jack Haley, Ray BolgerFilm Set Wizard Of Oz, The (1939) 0032138
The tin man in the center is me (before I shape-shift into my human form)

My day typically starts off on a tired note, with me feeling very much like the tin man from The Wizard of Oz, muttering for his oil can. While I am still in bed, I make an assessment of the pain level for that day. On a good day, this might be at 2-4 on a scale of 1-10, where 10 is the worst pain. (I remember only one day in recent history that I woke up with almost no pain and felt unimaginably grateful for it.) The stiffness is usually much worse – I can practically hear myself creak as I turn off the alarm and reach for my morning dose of medicine. It takes me at least an hour in the morning to thaw (as I call it) before I can manage to walk ten steps to the bathroom. During this thawing process, invisible aliens from the fifth dimension hook me up to their energy-infusion device. The device sort of has a mind of its own, and you never know how much energy it is going to give you. So it’s kind of a crapshoot. . . and I might add they hardly ever give you “enough.” I would ask the aliens for my money back, but it is a free service, and admittedly I am a hard customer to please!

IV Coffee Drip
The alien Supervisor decides how much energy I am to have today

Now, just for full disclosure, I have never been a morning person. Mornings have always been slow for me. Mornings with fibromyalgia are just even slower. It’s like I used up too much of the energy too early (i.e. the first twenty-something years of my life) from the alien infusion device, and now they’re worried that they will run out for good! So for the rest of my life, I am destined to have a lesser dose. Again, I would complain about their service, but it’s hard to talk to invisible creatures doing invisible things!

Going through the day is like living the life of Link (the protagonist from the Legend of Zelda series of video games). Just like him, I fight my run-off-the-mill battles to get through my day, but I also have to choose my battles with care. I have to gauge my level of energy for that day, and the tasks that need to get completed. I only have so many heart containers on any one day, and when they run out, I am toast (and Ganon laughs). So I need to allocate my energy for all those tasks. This means that sometimes not all of them get done. If I have something big to do, like the days I teach, I keep all other commitments to a minimum to save most of my energy so I can cope with being on my feet for several hours straight. It’s like your body is really a phone that is constantly low on battery. So you have to plan how you use it and recharge it periodically by taking rest breaks. This aspect of dealing with fibromyalgia has probably been the hardest on me. I was always a high-energy, go-getter type of person, and I hated to have to slow down. Over time though, I learned to be the tortoise instead of the hare – because it is the slow and steady that win the race with fibromyalgia!

android_low_battery
I hate to admit just how much I can relate to this!

Aside from my everyday energy level in the heart containers, I also keep some on reserve. This is to be only used in times of desperation, like Link’s magic potion that can save him from utter annihilation. But once used, it is gone and cannot be immediately retrieved. The reserve takes time to build back up again. Also, once you’ve used up your reserve energy, you are really toast! Last time I did that, I slept all day and avoided drinking water so I wouldn’t have to go to the bathroom – because I simply couldn’t rise from the bed. I see a bedpan under a Christmas tree in the not-too-distant future!

Incidentally, that is also pretty close to how a flare-up feels, except then the pain is much worse. During flares, my body feels like it is being invaded by stingrays, who have no qualms about stinging me. I feel shooting pains, typically starting at several different trigger points on my back, and shooting into my arms/hands and legs/feet. This is also combined with a general muscle ache, headache and TMJ pains. While a “normal” day with fibromyalgia feels like living with a never-ending flu, a flare can only be described as an all-body migraine. It often hurts to simply breathe, because the expansion of my diaphragm is painful. I experience nausea from the pain (though I rarely actually throw up) and lose my appetite (which is just as well, because it hurts my jaws to chew). On average, I experience a flare at least once a month, which coincides with my period. They can be more frequent if I am stressed out, or if I overwork myself, or simply sit uncomfortably for too long or perform certain repetitive tasks for too long without taking breaks (like pipetting for instance, and I am a molecular biologist!). As you may imagine, a large part of planning my day simply revolves around avoiding flares.

Late evenings and night times are often spent achy and tired after work. Dealing with even low levels of chronic pain (and I do on my best days) can be exhausting in and of itself. Add to that the fact that I often work myself to the edge of my energy level (even though I know I shouldn’t), and I feel myself reeling as I fall off the cliff. That’s when I know I am done for the day. I consider it a good day if I come home “tired” and not “spent.” Unfortunately, even when I am fatigued, I often have a hard time falling asleep and sleep restlessly when I do. As a catch 22, I notice my symptoms usually worsen after a night of poor sleep, but it is the pain and discomfort that keep me from sleeping well in the first place. So I am grateful for nights when I manage to fall asleep without much struggle and sleep all the way through. Only to start it all over again the next day.

Dark_Link_(The_Adventure_of_Link)
Living with fibromyalgia is like fighting Dark Link with the power glove

All in all, living with fibromyalgia feels like the struggle between Link and his own shadow – your body is trying to beat you, as you are trying to take control. You fight as hard as you can, you duck when you need to, drink the magic potion if you must buy yourself time, but eventually the heart containers go empty, and you are forced to quit the game. BUT… this is a video game, remember?? You never die forever! You agonize over Ganon’s laugh for a little while, and then you come right on back, and keep fighting!

 

Love,

Fibronacci

 

P.S. What I have described here comes only from my own experience. Others’ experience with the disease may vary. Fibromyalgia is a spectrum with those with very mild symptoms (I think I fall into this category) to those who are practically home-bound due to their illness. What does not vary, however, is the struggle against your dark self to reclaim your life. So even if the non-suffering reader has only read my personal story, I hope they felt at least bit more edified regarding what goes on behind the scenes of a person dealing with a chronic pain disorder.