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!

Seize Each Moment

Life has taught me many new lessons since I developed fibromyalgia. Perhaps one of the most important ones is to seize each moment while I still have it. You never know how long a good period will last. Do not put off for tomorrow what you might have the chance to do today.

I do not mean the statement above as a call to action on a good day. I know only too well how that can result in overwork and a subsequent flare. I mean it over a much longer time, sort of taking a bird’s eye view of my life so far.

A heightened pain response and reduced energy quotient with FM has meant that many of the things I used to be able to do are now off-limits. Yet reminiscing about my past abilities do not cause me nearly as much grief, as does the regret over not making better use of my healthy years while I had them!

There were so many things I had always wanted to do! Most of those things did not need to happen right then. They were just hobbies or skills I wanted to develop for fun – like horse-riding, scuba-diving, and many others. None of them made any direct impact on my education or career. So for a long time I put them on the back-burner and focused on school, on building a career, on all the “adult” things that you are supposed to do.

We do that a lot, don’t we? We put off the things that are for pleasure in order to tend to the necessities of the moment. After all, there will always be time for pleasure “later”!

I too felt I could always do those things later – later, when I am more settled, have more free time, and more expendable income. I was young and healthy, and felt time was on my side.

But how utterly wrong I was! 

My first realization of this came a couple of years ago when I got into archery. I enjoyed practicing the stances and getting the form right, more than simply hitting the target (which I was pretty miserable at but felt would improve as my form got better). I never got that far though. Soon, my muscles started to react violently to my drawing and shooting. The fatigue was often debilitating at the end of a practice session. After a few months of struggling through, I was forced to largely give it up.

Since then, the dominoes have continued to fall. I found that sitting astride a horse, even for a few minutes, is quite painful for me now. Hence I am forced to face that any equestrian dreams I may ever have had must now be buried as well. Then there is my long-held dream of scuba diving . . . I can barely even carry my purse for a few hours without my shoulders getting angry with me, so carrying scuba gear feels out of the question at the moment!

The recognition that I may never be able to dive hit me the hardest, because I was finally so close to having the time and the money to do it! Though the schools I looked into were more worried about my asthma – most seemed to not even know what fibromyalgia is – I knew the latter was going to be a much bigger problem for me. Right around the time I started looking into training programs for scuba diving, it seemed like Ms. Fibro stopped being a house guest and had decided to move in for good. It is hard not to feel the unfairness of it when you reach a finish line of sorts, and after you get there, the powers that be decide to move it farther back, somewhere beyond the horizon.

Yet, I feel I cannot give up! I must strive on to the next finish line, wherever that may be! When there feels every reason to just stop in my tracks, I am driven on by hope.

The hope is on many levels for me. On one level, I hope that one day I may still be able to get scuba lessons, or ride horses for short periods of time. On a deeper level, I hope that I can treat my run-in with fibromyalgia as just another bend in the road of my life. I have always hungered for new and varied experiences; so I hope that I can cherish the current one with FM, and learn from it; maybe one day even rise above it.

And for all future dreams and desires, I hope to know better than to think that I will always have the time for them “later.”

I hope to be able to seize each moment I have, and make the most of them, regardless of the moment itself!

Love,

Fibronacci

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