The Vacation Ambience

When several of my friends suggested that taking a break from work might do my fibromyalgia some good, I was never quite certain that would be the answer. After a recent vacation to my hometown in India, for the first time, I felt there might be some truth in that!

img-20161227-wa0041-1

For the three weeks that I was visiting my parents, I noticed a sharp decrease in my chronic pain levels. And with some pacing, I was able to retain good energy levels as well, and pack quite a few (not terribly hectic) activities. I cannot stress enough the value of pacing during this trip, and how well it served me!

wp_20161219_011

However, I think there were several other things at play there to promote my wellness. Perhaps the most important ones were:

(1) Stable weather – not too hot, not too cold, low humidity, and stayed that way!
This was a dream-come-true after the kind of changes we go through constantly where I live now.

(2) Lack of the repetitive actions that I am constantly engaged in at work.

(3) Lack of stress and a general atmosphere of relaxation.

Until about last week, I would have probably swapped the last two on the #2 and #3 spots. But one week back at the work, with all the pipetting and computer work, and I realized just how much my right arm, and right upper back and shoulders are aggravated by the repetitive motions.

Realizing the effect of repetitive strain is also what made me give serious thought to taking some time off, especially after I noticed how much better I continued to feel even after the vacation was over. I am not sure if this break can ever be reality – especially given practical considerations such as the cost of my medication, and the huge financial burden it would be if my husband were to cover the cost of my health insurance as well. Not to mention, the clock starts ticking immediately after one receives their Ph.D. Most grants and many “entry-level” job positions are not available past a certain number of years post receipt of the doctorate degree. So without a productive next few years, I could be stuck between a rock and a hard place in the future, with very few avenues regarding my career. But though an extended break might be a bad professional decision right now, later on down the line, it might make for a great personal care decision, and I am certainly keeping it in mind!

img-20170104-wa0002

As for the general atmosphere of relaxation, the beautiful home and garden decorations at my parents’ house played no small part in creating it. The designer, my mother, could probably rival any interior/exterior decorator with her ideas. She really made me feel like I was in a 5-star hotel while simultaneously feeling at home! So for this week’s photo challenge on ambience, I shared a few photos of her garden, throughout the post, which created a lovely “vacation ambience” that made me forget about work in ways I can never do at home. And that kind of lack of stress, I do believe, played a major role in managing my symptoms despite the packed two-and-half weeks I spent at that house. Relaxation truly goes a long way for pain relief!

Gentle hugs,

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!

Meditation for Pain Management

I read a paper recently by Mark Collen (founder of PainExhibit.org, an interesting collection of art made by artists with chronic pain, expressing some aspect of their pain), where he recommends a holistic approach to pain management. He suggests taking a “daily SWEM – socialize, work, exercise and meditate,” along with your pain medication, to manage chronic pain. He calls it the biopsychosocial model, because it involves aspects of pain biology, and the social and psychological well-being of the person suffering from the pain.

For the largest part, I like what the article talks about, and I agree with it. Hanging out with friends (socializing) or getting in work mode to find some engagement and routine certainly sound like reasonable distractions to help cheer you up, not feel isolated and feel accomplished towards some purpose. Exercising has also been shown before to improve mobility (or at least reduce the rate of its decline) in patients with chronic pain. [I will give a personal update of my aquatic physical therapy sessions soon in another blog post.] But while they are all good advice, the article did not give many tips on how to practice some of these ideas. That is perhaps the biggest drawback of the article, because I could see many with severe chronic pain not being able to leave the house to work, socialize or exercise.

This is why I like his last advice the best – meditate! This is something one can do anywhere, even laying in bed moaning in pain.

Featured image: One of my original oils on a 7X14 canvas, titled Sun Meditation.

I have personally used three types of meditation with good results: deep relaxation, guided imagery and mindfulness meditation. I have given a brief account of my experience with each below, along with links to some of my favorite videos for each.

Deep Relaxation

I find this especially nice in the middle of the day when the stresses are starting to build up, my pain levels are starting to rise from lack of rest-time at work, and my energy levels are flagging. A ten-minute guided relaxation meditation helps me feel calmer and more grounded, helping to release some of the tension and adding just enough energy to make it through the rest of the day.

Guided Imagery

I use this a lot in the mornings before I have shape-shifted from the tin-man into my human form, to help with the pain and stiffness so I can get on with my day. Basically, you are guided into imagining an interaction with your pain and dealing with it as an object. Along with helping me to relax, I actually find this helps reduce pain levels at least temporarily! At first, I almost always find the pain rises when I focus on it, but then as I continue, its intensity decreases. This surprised me at first because I wasn’t expecting it to work as good.

I have a couple of favorites for this type of meditation: a short ten-minute version (which I use in the mornings) and a longer 1-hour version by Michael Sealy, which I use at night. Sealy calls it “sleep hypnosis” but it’s really all the same I find! Incidentally, as a plus, the latter does also help me fall asleep!!

Mindfulness Meditation

This is probably the type of meditation with the most amount of research behind it showing its efficacy. Mindfulness is the way to live in the present moment – not worry about the past or the future, not try to change anything – just observe what is going on without passing any judgement on it. This is something that takes a lot of practice at first. At some point, it is supposed to become second-nature, but I have not achieved this regarding all aspects of my life just yet. This is useful when I am in serious pain and wanting to throw me a pity-party. A lot of the stress and self-pity comes from worrying about what the pain has done to you (and your plans) in the past and how it will affect your future. Just being in the moment and acknowledging the pain, but not passing any judgement regarding it, is curiously freeing. I am learning to do more and more of this and just taking one day at a time, without stressing about the future, and acknowledging the state of things without judging its impact on me. As you can imagine, I don’t succeed at this at all times but I try!!

Michael Sealy has a short video to help you get started on mindfulness meditation, if you feel so inclined, but this type of meditation is really not best done “guided.” It is useful to read about it and practice it by yourself. “Mindfulness: An 8-week plan for finding peace in a frantic world” by Mark Williams and Danny Penman is one of the books that might make for a great starting point.

These are just my coping strategies, I don’t know if they will help others or not. But just in case anyone wanted to try it out, I hope this helps them get started. You never know what helps until you try it out! I was certainly surprised by how well some of these worked. And now meditation has become one of the go-to tools in my arsenal!

Love,

Fibronacci

P.S. If you are interested in reading the paper I mentioned in the post by Mark Collen, it is called “Operationalizing Pain Treatment in the Biopsychosocial Model: Take a Daily “SWEM”—Socialize, Work, Exercise, Meditate” and was published in the Journal of Pain & Palliative Care Pharmacotherapy in 2015. It is a pretty easy read despite the mouthful title!

Slow and Steady Stay in the Race

Yesterday, I spent some time meditating and reflecting over the last couple of years of my life. It was brought on by a conscious decision to slow down my pace as the stresses mount on me towards the end of the semester causing a steady decline in my health. Though I sometimes feel guilty or silly for slowing down, I keep telling myself that it is not a crime to put your health before your work, and take a weekend off to recharge. In the long run, I think that will be the key to my finding some level of normalcy in my life. And looking back, I think it already has!

Featured image: Finding Light (9X12, oil on canvas). I could not think of a more appropriate painting that could possibly describe the journey that I write about below.

A year or so ago, when I hadn’t learned to slow down yet, I was super-miserable all the time. Every day I would force myself to rise even though I felt thoroughly unrefreshed. I ignored the stiffness in my body that screamed in pain when I overruled its need for rest and forced it into some clothes and shoes as I made my way to work. Despite the gallons of coffee, every afternoon, I was close to passing out from exhaustion. I would have to crawl my way home before I collapsed to save myself the indignity of passing out at work (which has also happened before). I was on a non-stop roller-coaster ride where I ignored my body to accomplish more things, but then I would hit a new low and not be able to rise from bed for the next few days. I worked my ass off the days I was at work and then wasn’t able to work at all for several days after. I needed at least one sick day every week on average, especially after the days I taught two classes back-to-back, 2-3 hours each. Several times, I thought of quitting everything, wondering if anything was worth it anymore.

Then at one point, I learned better. I don’t know what pushed me over the edge – maybe it was a missed opportunity to attend a conference because I couldn’t get up from bed that day – but I decided to quit that lifestyle. For good. I slowed down. I went to work later than usual, and gave myself time to “thaw” and meditate in the mornings. I cut my work hours down to 6-8 a day (instead of 10-12, at times 15, before). I switched out my chair for a slightly more comfortable one. I accepted the help of a pillow from a friend. I wasn’t shy about using a heating pad at work – which helped a LOT! I got a box and put it under my desk, ahead of my chair, so I had make-shift chair-cum-recliner to help ease the pressure on my legs. Sometimes, I use my electro-therapy machine for a quick massage at work and try not to feel awkward using it. I started taking more weekends off to recharge than I ever did before. I spent more time with my husband, learned to relax more, explore the outdoors, exercise gently and try to be happier outside of work in general. I started thinking about quitting the crazy scientist routine and finding a job I could be happy in (aka, one that is sciencey), but one that would also allow me some guilt-free time off.

This was not an easy change for me. And I would say I am still in a transition state, because I still feel guilty at times about the time I take off from work and feel the need to push myself harder than I should. BUT . . . what I have been able to do so far has already helped! While I still have ups and downs, they are not nearly as dramatic as they used to be. I feel calmer and more grounded in general than I ever did before. While I still feel an energy crash towards the end of the day, I feel the blow of the crash less harshly than before. While afternoons are still rough on me, I now use some tea and meditation to try to calm my body instead of the gallons of coffee I dumped inside me before. And I have fewer days when I feel like I am about to pass out from the exhaustion. I also need to take fewer sick-days off from work now that I work less everyday. In other words, I am starting to find a steady state for myself, that is lower than what it used to be, but it also means I have less far to fall when I do, and I fall less frequently!

From time to time, my old self still pipes up and wants me to speed up and stay rushed in order to win the race. But when I took life so fast, I failed to enjoy the sweet moments along the way. It’s like my surroundings were blurred, and I missed out on enjoying the fruits and flowers by the road-side. And then I hit a point, where I realized that if I didn’t slow down, I wouldn’t even be in the race! Fibromyalgia changed my perspective on life in general. Who cares if I win the race or not? (Why the hell are we running it anyway?) Even if I did win, I was losing so much along the way that was it even worth it? Life with fibromyalgia feels more like a marathon than a sprint. The slow and steady may or may not win the race, but at least they can continue to stay in the race. And maybe, just maybe, that’s more important anyway!

Love,

Fibronacci