The Joy of Painting

I haven’t talked much about painting or the painting process in this blog, but it has been one of the most important ways I have been able to handle my fibromyalgia diagnosis. There is so much more to painting than what meets the eye. It is not just mixing paints and adding color. As I discovered one day – much to my own surprise – painting is a state of being!

Painting allows me to depict my world and my experiences the way I see it. It gives me the freedom to explore my frame of mind. It is a safe space where I can unleash my pain, sorrow, frustration, anger, confusion, joy and creativity. In the security of the studio, surrounded by the paints and brushes, I have the power to create a physical embodiment of my emotions. Then in choosing to share that piece of my inner world, I allow others to feel a portion of my feelings. It gives me freedom and power to accept, to portray, to share, and with only as much depth and complexity as I would like.

93_Spring Snow
Spring Snow (8X10, oil on canvas)

What does the painting of the dense woods on a snowy day make you think/feel?

With an illness like fibromyalgia, which has often left me feeling alone and misunderstood, painting has opened up a safe avenue for a dialogue with the world. An emotional painting forces engagement with the viewer. A desperately private person, I feel uneasy opening up my own mind, heart and soul. So my paintings have been a window into my world! I prefer this mode of conversation, in many ways, because I do not have to explain my situation to anyone. An emotional painting does not necessarily force the audience into the artist’s mind. It makes them look into their own, through the prism of their own experiences, and find within them the emotions that the painting embodies or evokes.

I have found security in being able to paint, both as a way of exploration as well as expression. And in a surprising way, that has really helped me deal with the many aspects of my chronic condition.



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.



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!

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!



Balancing Positivity and Honesty

A.R.D. warrior has a couple of very insightful and truly wonderful posts about fighting the guilt that the invisibly ill feel and why it’s OK, not to be OK. When I happened upon these, I could have really used a heavy dose of the major take-home points from those articles:

  1. You don’t have to prove to others that your sickness is real or what it does to you.
  2. You are not alone in feeling guilty and it is possible to reduce its impact on you.
  3. You cannot be OK all of the time – just the nature of the beast – and that is alright!
  4. Staying positive about your present and future doesn’t mean you need to kid yourself that you do not have a chronic illness to struggle with. There is a balance to be struck between being positive regarding your prospects and simply being honest.

Reading the two articles caused a flood of thoughts in my brain. I cannot thank ardwarrior enough for putting in words so much of what goes on in my head! So much of what the articles talked about applies to me, that I felt it warranted a sincere discussion.

I am notoriously incapable of admitting when I am not doing so hot, especially to other people. I used to try to fool myself the same way I try to fool other people, but I am getting better at that. I am getting better at acknowledging when I don’t feel so good, and taking steps to stop myself from getting worse. Sometimes they work, sometimes they don’t. And when they don’t, I try to be honest regarding my feelings of disappointment and guilt. Sometimes I cannot help but let all the guards down, break down and feel sorry for myself, admit to wanting to give it all up (whatever “it” really is), and just let my husband hold me (gently) until I feel better. BUT . . . I still cannot come close to admitting to others how I truly feel. I could be in the midst of a massive flare, and it could be obvious to everybody under the sun that I might be ready to crawl into a pre-dug grave; but if someone asked if I was OK (with all good intentions and never in mockery, I might add), I have an automatic speaker that comes on through my mouth that says “I’m OK.” The other person obviously realizes it’s a lie, and either withdraws from further questioning or asks if I’m sure. If they go the second route, I either say “Yeah I’m fine” and rapidly change the topic/awkwardly pretend I am occupied by something else to stay and talk, or say something on the lines of “just tired.”

I know this is a personality trait that alienates people. They are trying to be friendly and kind, and I am rejecting their advances to reach out to me. I am putting myself in an isolation chamber when I need not. So then why do I do it? Why do I build a wall around me and refuse to let others in? Why am I so resistant to reaching out for help, or even just accepting the help that is offered, when I am often the first to reach out to others if they are ever in need?

I suppose part of the truth is that I have been burned before. I have reached out for help to have only found myself ridiculed. But the whole truth is a lot more complicated than that. I am usually good enough about living behind a public mask, so if you had to ask me if I was doing OK, I am so far from doing OK that I wouldn’t even know where to begin. I suppose an easy answer is that I am in a flare. But few people understand what that 5-letter word entails. (If you are lucky enough to not know it first hand, I touch on it very briefly on a previous blog post about what fibromyalgia feels like.) Even if they did, they would probably just feel awkward and not really know what to say or do, and I hate putting people in that kind of a position. I am also not quite ready for others to feel sorry for me, though I allow myself that luxury every once in a while. Sometimes I feel guilty – pure and simple – to admit to being miserable when I am so young and have it so good compared to many others. I feel like I have no right to complain. Finally, I think I am just plain ol’ afraid of what might happen if I completely give into admitting the misery every time I feel it. Not admitting wretchedness openly is my way of keeping up a face that may not be entirely true; but at any rate, it gives me the semblance of having some power and control over myself. I am afraid of what it would do to my soul if I gave up that last shred of power. (Feeling a loss of control over my own self due to the unpredictable nature of my condition has been a big issue with me, and I have talked about it a little here as well.)

Another aspect of this issue worth touching upon is the idea (that is backed by science) that sometimes distraction does help to reduce how much physical pain you feel. The pain is kind of like a baby throwing a tantrum. The more attention you give to it, the more demanding it becomes. When you are putting up a face, you are forced to focus on something other than your pain and misery, which may not make it go away but can certainly reduce how much it consumes you. For those of us with chronic illnesses, we know the pain will never completely go away! So all we can really do is minimize how much effect it has on us mentally and emotionally.

As an example, I was feeling on the poorer side of my new normal on my birthday some weeks ago. I hated to admit this to anybody, even to myself to an extent, especially on a day when everyone was obviously trying to be nice and make me feel special. So I faked it for the most part, and was extremely touched by everybody’s gestures. I was glad to have not let others down when they were trying to do something nice for me (another one of my big “things”). But, as ardwarrior says, there is a balance to be struck here. And I tried as much as possible to rest whenever I could and not push myself too hard. I treated myself well, and accepted support (though only from a select few) when I felt I needed it. All in all, to be honest, I think I managed to have a pretty good day! And I was proud of myself for it too!

The whole event gave me a mental boost that I am MORE than my illness. I am not a fibromyalgiac (this is where I coined the term, if you are curious). I am a biologist, an artist, an amateur photographer, an avid reader, who also enjoys writing (mostly prose now, but once upon a time I used to write poetry), takes an interest in archery, and was probably a fish in a past life . . . AND, who also happens to suffer from fibromyalgia. I may not have the level of energy that I once did, or be able to do all that I once dreamed of. But I am still capable of doing the things I love – though in a different way, and I still need to find that way. In an odd way, developing fibromyalgia has actually enhanced me as a person, but I will talk more about that in a separate post.

So . . . have I found the balance? Not sure, hopefully a little.