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!

What does it mean to be chronically ill and happy?

If I had to define what it meant for me to be happy, I would call it a state of mind born of blissful contentment and a feeling that all is right with my little world. But as a chronically ill person, haunted at times by the ghost of depression, whose life feels turned upside-down, what does happiness mean for me now?

I always had the feeling that, even now, happiness still held the same meaning for me. The rules of the game never changed, only its appearance has changed; like instead of the familiar black and white chess board, we are now playing the same game with a blue and yellow color scheme! But “a sense of blissful contentment and a feeling that all is right,” when I am not “content” being a fibromyalgiac and everything is clearly not alright, how is that possible? How can it still be the same game?

These are questions I have been meditating over for a while now. But the epiphany came to me one day as I was showering after my pool exercise session. No, I did not run out naked yelling “eureka!!!” but it is funny how these things happen, isn’t it?

Eureka!
Yes, well, except I wasn’t in a bath . . . and I didn’t have a long-sleeved shirt on either. (Who does that when bathing anyway??)

It has been a busy month or so for me. There were more social engagements last month than I had attended in a year. At the same time, the pressures at work have been mounting as well. The result was occasional increases in pain, fatigue, and self-doubt regarding how I was handling my situation . . . was I over-committing myself? Why did I accept the invitation? Why do I feel the need to push through when I should clearly stop?

Yet underneath all of that, I detected something else – I detected happiness.

And then I realized that it really came down to a simple equation! If you feel like your life is delivering more than you expected it to, you feel satisfied and content and happy. Conversely, if reality starts falling short of your expectations, the result is resentment and unhappiness.

Featured image: Light from a Blue Door (16X20, oil on canvas)

At this point in time, I had spent several months being utterly miserable, not being able to really do much of anything. So now, being able to be there at a friend’s wedding, or at their birthday dinners, or just a couple of evenings out goofing, being able to attend the Bob Dylan concert with my husband, all of this meant a lot to me. I had expected the extra activity to cause increased pain and fatigue. I knew beforehand that I will have to pay for it over the next few days. But all of those little moments shared with my husband and my closest friends brought me happiness! And the ugly reality of my fibromyalgia symptoms could not put out that glowing ember because it was nothing I didn’t know was coming! In fact, I was nowhere near as bad as what I had mentally prepared myself to be. So you see, my reality far outweighed my expectations, despite the aggravated symptoms. And there I was – chronically ill, and happy!

In many ways, I have been happier since developing fibromyalgia than I was before. The chronic illness forced me to slow down and appreciate what I have in the moment, instead of blazing through to next finish line. It gave me time to realize how much I cherished having a flexible job with a reasonably understanding boss, how much my relationship with my husband meant to me, how much I enjoyed pursuing my hobbies (something I had all but given up to the harsh mistress that science can be!). It taught me to live moment to moment and take life as it comes. This is in stark contrast to my old self (whom I haven’t completely disowned yet), who was in constant competition with herself! I was never “blissfully content” with anything because I wanted to be more than I was before. Nothing could possibly “feel all right with my world” if I am constantly dissatisfied with it! The chronic illness forced me to drop my expectations far below what I could have ever imagined for myself. And then suddenly, I found my reality fared much better than those new lowered expectations!

In the end, thanks in part to my chronic illness, I realized I didn’t have to do or be anything to be happy. I simply am!

Gentle hugs,

Fibronacci

Overcoming Brain Fog

Going through life with a fuzzy brain can be challenging enough, even when one is not in graduate school! But being in a field where cognition is highly prized, I had to learn fairly quickly how to compensate for the brain-jelly effects of fibromyalgia and its medication.

Featured image: Reclamation (11X14, oil on canvas)

Below are the 5 most helpful brain fog coping skills I have learned.

1) Use your smartphone for lists and reminders : If you find you forget your memory aids (like leaving your grocery list at home), this one is for you! Most of us carry our smartphones with us everywhere, and it is easy enough to make lists, and add events to the calendar on those. They also have handy alarm and reminder features, which is a plus!

What if you have trouble remembering to add the commitment to the calendar on your phone? I find it best to add the event as soon as the appointment is made, before you have a chance to forget!

2) Jot down/verbally repeat key points in a conversation : Any discussion, specially scientific ones, require some level of on-your-feet processing of information for the exchange to be meaningful. When conversations start turning into word soup, I often find it helpful to repeat important points/questions, and/or write them down to help process it in a different way (auditory vs. verbal/written). Having quick notes also means you can think about it later and contribute your insight at a better time.

3) Avoid multi-tasking (if possible) : Multi-tasking requires being able to switch gears from one thing into another fairly seamlessly, which takes more mental capacity than just focusing on one thing at a time. More things happening at the same time means more chances for confusion and making mistakes. But if you must do it, below are two quick tips:

  • Multi-tasking tip #1: Take a short (mental) break between two tasks. This often keeps me from mixing up the details of one activity with those of the other.
  • Multi-tasking tip #2: Keep a plan of what needs to be done for each task. For example, if I am running 2-3 experiments that each take several days to complete, I will write down what needs to be done for each experiment on each day.

4) Use isochronic tones/binaural beats to help focus : I cannot say that I am 100% sure that brainwave entrainment actually works, but it is free and certainly something that is worth a shot! There have been times when beta tones have helped me not get distracted, and delta tones have helped me stay asleep . . . and there have been times when they have done nothing at all! They usually work when I use them for short periods of time, followed by periods of disuse. I suspect if I use it every day for too long, I start ignoring it, and that is why they stop working for me from time to time.

5) TEACHING TIP – Turn brainfarts into teachable moments : In my experience, students typically respond well to your mistakes if you can praise them for being able to spot it, with an appropriate apology, and turn it into a teachable moment. And if you are asked a question you do not know the answer to, it is OK to admit to not knowing it and offer to look it up for them. Alternatively, teach your students to be independent knowledge-builders by showing them how to research (aka, google) their question themselves and find reliable answers.

A lot of the tips above may seem really obvious. But I had to go through some trial and error to figure out what now seems most elementary. So if you are in a spot where you feel forgetful, unfocussed, frazzled or foggy, I hope these tips give you some ideas for how to successfully wade through the murky waters, and be able to achieve more from your day!

Love,

Fibronacci

The Power Within

Chronic illness has a way of making one feel very powerless, like they have lost say over much of their own body. But a couple of incidents over the last few weeks showed me just how much power I still retained. And just how resilient the human body really is!

I had the epiphany a couple of weeks ago when I managed to desperately (and successfully) “hold back” a major crash, or at least keep hidden any outward signs of it, while in public. It was sudden, my energy was depleted, and I was feeling dizzy and nauseated as an intense gnawing ache gripped my body. Yet I was not in a position where I could easily make an escape and collapse in bed, or even find a place to be miserable in private.

So I tried my best to look as normal as possible on the outside. I think I was successful because I did not pass out regardless of how close I came. I am not sure how much sense I made during the conversation with my boss. I suspect I said things to just put off the talk for later. Processing anything seemed impossible at the time, as it felt like it took all my remaining capacity for effort to just hold myself upright and stay conscious.

Incidentally, this wasn’t the first time I was engaging in such a battle of will against my body. That was my modus operandi for the first year with FM before I learned how disastrous that is for me.

Given my past experiences, however, I knew I could not keep up the shield for long. Running on auxiliary power feels incredibly draining. Without exception, I always feel worse later when I can finally stop the show. On the contrary, when I am free to “give in” to the crash, I find I swing back from it faster.

I liken it to a dam that is holding back a flood. It works up to a point. But as the force of the water grows, the dam eventually breaks. And then it causes more damage than if you had just opened the dam(ned) gates in the first place. But sometimes it is necessary to risk that damage in order to evacuate folks and save their lives.

38_Sun Meditation-II
Sun Meditation (7X14, oil on canvas)

Sometimes I wonder how erecting such an internal dam is possible at all. My best guess is by the sheer force of will.

I find it amazing that such will is capable of us puny human beings! And the conscious awareness of that kind of strength of will is certainly a gift in itself. It is a reminder of the power that we hold within us, regardless of how much control we may feel we have lost to our illnesses.

But with great power comes great responsibility. Stronger the power, the more sparingly it is best exercised, so as to avoid its abuse. It will be a rewarding journey as I learn more on how to best channel and direct my will power towards achieving better balance and harmony in my life.

Love,

Fibronacci

Break in the Gloom

The worst part of a seemingly never-ending flare is that it starts feeling like a new sub-normal. You almost forget what it’s like to feel halfway decent, but remember just enough to make you doubly miserable about your new low. It is during those times that all I wish for is a glimpse of the light at the end of the tunnel. If I only knew that the light existed, that the tunnel had an end, the darkness would be so much more bearable!

Luckily, I was able to get just such a glimpse recently.

80_drawn-into-the-light
Drawn into the Light (7X14, oil on canvas)

For the second time this summer, I went up on my medication to combat the high pain and fatigue levels. Hopes were low this would help. But lo and behold, I noticed a definite improvement in my fatigue levels and less pain/stiffness overall! I was also waking up more days feeling a bit more refreshed than I was before.

That was relieving, but it all really came to a head last weekend.  Last Saturday, to my own surprise, I was able to drive out to a luncheon with a friend, do some grocery shopping and drive us back; and then be able to sweep one room in the house and paint the Sunday after!!

I realize this may not sound like much to a “normal” person, but this was more activity than what I could spend my weekends doing in over a month! I used to be so completely worn out from the work-week, that all I could do over the weekend was stay collapsed and try to recharge for the coming week. Besides, grocery shopping and housework are some of the most flare-inducing activities for me, given the repeated bending/stooping they require. So being able to do all of those things in one weekend – hell, I almost felt normal normal again!

The best part of this was the magical effect it had on my mood! I knew that kind of a high cannot last (and it didn’t – last couple of days have been pretty low again), but even in the current return of the darkness, I do not feel nearly as hopeless as I was before. I was able to catch a little break, a small breather, in the middle of getting my ass kicked by fibromyalgia. And now I feel like I have returned from the edge of doom. I have a renewed sense of vigor to fight this brute, and not feel like I am sinking into oblivion.

I know now that the light exists at the end of the tunnel. Though I may never see it for long, it casts enough of a glow so that the tunnel is now dimly lit. And that is enough for me for the moment.

Love,

Fibronacci

Exercising Intimidation-II

I could have equally titled this post: How NOT to Do Medical Exercise.

As with nearly all things related to fibromyalgia, I learned this the hard way. Perhaps so did my Exercise Physiologist (EP). 


At my first therapy gym appointment, last Tuesday, I broke down.

The pain had just shot through the roof and I could not take it anymore. I was tearing up uncontrollably as the pain and effort had just taken the better of me, and nothing the EP tried could ease it any.

So I just laid down, with a box of tissues by my side, waiting for the burning shooting pains from my back into my arms to ease up. I wondered how much of the burn was from the pain and how much from the shame, as I am not one to easily lose control of my emotions in public like that.

What just happened?

At the core, it was a particularly bad day since I was still in the grips of a massive flare. I was super “doped up” on pain medication and muscle relaxers in order to simply be able to get up from bed.

The painkillers had me numbed, but the effort I was exerting to do the tasks was more than I felt they should have required.

The EP reminded me that these were “level 1” exercises and should not require that much effort. It was clear I was performing poorly. She pointed out as much, along with how much more I should have been able to do, especially at my age.

For several weeks now, I had felt that I was making some progress (overall) through our exercise sessions. And since our initial meeting, I had grown to respect my EP a lot as well. She showed me tips and tricks that helped me quite a bit.

But now it sounded to me as if she was saying all the effort I was putting in was not good enough. I felt like I was not making enough progress fast enough. And that really stung.

She tried some other exercises in order to loosen up my muscles. And then asked me to try the initial exercise again, that I had previously performed poorly at. She asked me to “will” the problem muscle groups into relaxing.

So I tried. It wasn’t working.

I was beginning to get afraid that she thought I was a waste of her time and effort.

So I pushed. And I accomplished. I pushed my arms, holding a ~3-ft stick horizontally, all the way over my head, and touched the surface I was laying on.

Then I broke down.

I had managed to “will” my muscles into doing things they were not ready for. And I paid for it by being perfectly miserable the next several days.

Based on this experience, I made several Personal Rules of Exercise Therapy:

(1) Take it extra easy when exercising on quite so much painkillers. I realized they mask the escalating pain until it cannot be handled anymore, and then you feel it all at once.

(2) Do not try new exercise routines, that you don’t know how your body will react to, on especially bad days.

(3) Voice your pain and fatigue more readily, even when not asked.

I can often be really bad at this. I always wonder if it is “really” as bad as I feel it is, and tend to underestimate and downplay my maladies.

(4) Regardless of what anyone else says, listen to your body.

The last one is the most critical, and the hardest for me. If I never pushed myself at all, I would likely never rise from bed. But I never know when it is OK to push how much without the pain getting out of hand. And that boundary changes every day as well. But I imagine it is a learning process, and I hope to get there some day!

I was definitely wrong to push my body (again!) like that, and was probably also over-reacting to what the EP said. But I was also having a very rough day. I guess I was hoping for a bit more sensitivity and encouragement for what I was still trying to do, regardless of the pain and fatigue, than being shown what I could not do. It’s not like the latter doesn’t stick out in my mind like a sore thumb already!

So if you’re an exercise physiologist or physical therapist reading this:

  • I would urge you to consider the fears and insecurities your chronic pain patients might have. I am sure you mean the best for all your patients, but please consider choosing your words carefully. We can be very vulnerable when we feel like our whole lives have been turned upside-down!
  • It would be great if you could take the time to get to know us a bit. For example, I can often look pretty normal even when the pain is getting up there. By the time my face starts to show it, I am close to breaking point. Knowing such things gives you some idea of when it might be OK to push your patient a little, and when it is not.
  • Keep lines of communication open with your patient. Mine did, and we sorted out what happened over the next couple of days. Amidst my continual apologies for losing it that day, we discussed expectations from therapy and how what she said had come across to me. Our discussion renewed my faith in that she was committed to helping me, and we had a great pool session later that week.

Gentle hugs,

Fibronacci

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.

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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.

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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