Weekly Photo Challenge: Admiration

Fibromyalgia is considered to be, at least partly, a genetic disorder. When I think of my family, I cannot think of anybody who may have suffered from this. But I also recognize the possibility that it may have gone undiagnosed in a family full of arthritic people, especially since it is a relatively new diagnosis, and even now some doctors debate its validity.

With that in mind, I am reminded of my mother, who did inherit osteoarthritis from her mother, and has lived much of her life in pain. Though most of her pain was concentrated on the legs, I now wonder if she had some milder form of fibromyalgia since her pain started at a very early age. Even now, I understand that her arthritis is in the relatively early stages, which may or may not explain how much pain she is in, and how much trouble she has walking.

Despite all of that, she is one high energy woman! She can pull all-nighters like any teenager in a college campus and make it through the next day and a half before crashing. Although she is sometimes slow and needs to hobble, she is extremely social and takes part in every activity. I have almost never heard her complain of the limits her pain set for her. In fact, I am not sure she let her pain limit her at all!

As my own mobility has declined recently, about two decades sooner than my mother’s did, I am more in admiration of her spirit than ever. I admire her ability to take it all in her stride and never let the pain or discomfort stop her from living her life on her terms.

A few days ago, my mother celebrated her golden-jubilee birthday. I painted her the featured imageLady with Magnolia (11X14, oil on canvas). That lady in the painting is, indeed, my mother. Along with being a birthday-ode to a flower-loving woman, the painting (which I found quite challenging) was my way of expressing my admiration for a woman who has inspired me to always rise to every challenge life sets before me.

As her daughter, I hope that I never let my pain limit me from achieving the most important goals in my life. And I hope to be able to always define myself as an individual with several qualities along with chronic pain, instead of letting the pain define me.



It’s the Little Things… (Part II)

A few days ago, I wrote a blog post with the same title where I complained about a bad day. But just as some little things can bring you down, other little things can bring you back up! And this is one of those other little things!

Yesterday, I was able to help move and set up some poster boards on table, which I am really pumped about! They were not super heavy but it did involve some carrying, dragging, pushing, lifting, etc. – basically a bunch of repetitive tasks – which are generally troublesome for me. My arms and shoulders did ache like hell later and I felt the stabbing pains at the trigger points on my back, but I was able to manage the pain with heat alone (I was determined to not have to take a tramadol that day for the first time in a couple of weeks). To add to that, I even managed to teach two classes back-to-back. I had to stay under a heating blanket the rest of the evening, but again, no tramadol – so hurray!!

It’s been a crazy couple of days at work so I am really grateful that I am not back in a flare already. I have had a ton of proverbial fires to put out in preparation for an undergraduate poster session that my students are participating in. My mentee in the lab (also an undergraduate student) presented his data at lab meeting today, so I have been helping him last couple of days with that as well. So then when my physical therapist asked me today how I felt, and I could say that my pain levels were only at 2-3, I was ecstatic indeed!

I am trying not to overdo things though. I often end up feeling like my good days are like $10 gift cards, which save me nothing and only encourage me to overspend! Except in this case, it is my energy I am spending, instead of money. I even wrote a whole blog post about that once (linked above)! But I am determined to not do that today. I took out an hour of rest time between work, physical therapy, and back to work. I hope that helps conserve my energy a bit better.

I know better than to expect this kind of goodness to last too long, but I am certainly enjoying the moment while I am in it right now!



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!



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!



The Pain Scale

One, two: buckle my shoe . . . nine, ten: score your pain!

How do you give an “objective” score to something that is inherently subjective? It has always been incredibly challenging for me to give my pain a score from 1-10. I never quite know how to answer that question, and I feel like I am giving inappropriate information if I try to answer it without some knowledge of how the scale works.

I had a honest talk with my physical therapist about this one day (who asks me this question twice a week) and here’s how she defined it. I thought it was pretty decent and have personalized it for myself below.

0: You are not consciously aware of your body. Basically, it’s doing its job invisibly and not asserting its presence on you.

1-2: You are aware of the part of your body (it is not actively in pain but not invisible neither). For me, this is what I call “a good day.”

3-4: You are aware of some pain but it won’t slow you down and you don’t need to take breaks because of it, don’t need emergency pain medication yet but maybe an extra muscle relaxer won’t hurt. This is my “new normal” under the current pain management regimen.

5-6: Now the pain is bad enough so you need to take breaks because of it but you can still mostly keep up with what you need to do, maybe after a pain pill (and a muscle relaxer), might need a heating pad/blanket. I am frequently at this “sub-normal” that’s not quite a flare.

7-8: This is where your face starts to show how much pain you are in, you need frequent breaks, probably cannot do much of what you need to – just grab a heating blanket, a higher than usual (but not over the recommended max!) dose of painkillers and and get in bed. I would call this “a bad day” – “flare” category.

9-10: Under a heating blanket and crying, probably even after taking all the pain medication you possibly can. For me, this is the stage where I avoid drinking water so I don’t feel the need to pee because I cannot make it to the bathroom. Full-blown flare.

Although this scale doesn’t take into account the different types of pain or the accompanying fatigue, it makes room for you to judge its impact on you. I have described my pain as aching, gnawing, sharp, stinging, shooting and stabbing at various times in various parts of my body. And an objective 1-3 of the neuralgia-type of pain feels way worse (on a practical level) than a similar level of aching pain. Similarly, dealing with a 4-5 aching pain on a high-fatigue day feels worse than usual. The descriptive scale gives you the room to give it a higher score for those instances than what the “objective” measure might suggest because of its impact on you. This can be especially helpful on a computer, to whom you cannot explain the daily fluctuations in the types of pain or fatigue levels.

Having this scale makes me feel like Helen Keller who has just had an “eureka” moment after connecting the coolness of the water, the quenching of her thirst, to the abstract hand gestures made by her teacher spelling out W-A-T-E-R!

It is a curious relief to receive a straight answer to your very personal chronic pain-related questions. Most of the time it is met by a blank face or a shrug of the shoulders that just lets you know that your doctor cannot really comprehend what you are going through. This incident really made me connect with my therapist and trust her more. And trust (and honesty) are, of course, the crucial first-steps to her being able to help me!



It’s the Little Things. . .

There are some big things that fibromyalgia has caused a kink in – like my future career plans for instance. But there are also those little, day-to-day, things . . . and somehow those little things hurt a lot more. I have been trying to get away from stressing over the big picture of my life and just getting on one day at a time, and there’s where those little things kick in to make me feel like crap.

Warning: This is a brutally honest (aka complainey/whiney) post. I don’t like to do very many of these but every now and then, I feel the need to keep it real out here in my blogosphere. So here goes! And to describe everything that my words could not, is the featured image – my tribute to Edvard Munch – called Silent Scream (8X10, oil on canvas).

Last few days I haven’t been doing so well with the weather changing constantly. My pseudo-neuropathy has been raging in my arms and legs with stinging, shooting pains that leave my limbs numb/”asleep” even after the major wave of pain subsides for a bit. I have been breathing shallow because my chest and back near the lungs have been in pain, and it hurts to breathe. The occasional deep breaths have felt like knife stabs in my back. Shoulders, neck, head – not much was spared the assault of the weather(PMSing teenage-wo)man. (No offense to women, I am one myself, just with a twisted sense of humor). So long story short, I have been a physical wreck, trying to hold my brain as together as possible while functioning on pain killers, which historically have only added to my brain-fog when I have it.

On a day like this a bunch of us decided to do lunch together. Our boss was buying us lunch and driving us there. (I was surprised when I found myself not making an excuse to get out of it. I owe my new-found confidence to my physical therapist. Or maybe I was just too foggy to come up with an excuse!) Anyhow, I went and I ended up being the slowest walker of the lot. Everyone else, except for a friend who hung around with me, got to the car several minutes before I did and had to wait for me. I hated this tremendously because I could just imagine them in there talking about me and how pathetic I was. Although I tried to joke it away, I heard only one awkward laugh. I can’t imagine them being very pleased about having to wait to feed somebody a free lunch. I hated that they had to wait for me because that is something I generally dislike. I am the kind of person that likes to get places early and wait for others, instead of having it the other way around. Besides, I used to be one of the fastest walkers not that long ago! And now I can barely keep pace with a snail. And don’t even talk about stairs!

Have you ever been on a bus that had to kneel and wait extra long at a stop to let on a wheelchair-bound person? And everybody is politely quiet but secretly annoyed at that wheelchair-bound person slowing them down? At first, the wheelchair-bound person looks steadily down and acts occupied by strapping themselves in, as they feel the annoyed-but-too-polite-to-say-anything stares from the other passengers. Then as the bus starts to move, they try to smile at the person next to them and make small talk to show that the stares hadn’t really bothered them. But they secretly know that it did. And I know because I felt like that wheelchair-bound person, even though I wasn’t in a wheelchair.

Anyway, a few good things came out of this, I suppose. (1) Although I am always grateful to my friend that often hangs around (slowly) with me, I was infinitely more grateful for his company that day. (2) My husband reminded me of how I always walked so much faster than him and left him behind – at least I won’t be doing that anymore! That one made me chuckle amidst my tears, because now he is often my walking stick. (3) It taught me a valuable lesson that I should probably avoid large group thingamajigs like that and only go out with a small cluster of friends that I feel more comfortable with. (4) I applied lesson #3 yesterday and avoided a large group of friends to spend time with an old friend and her new husband, and had an amazing time! That was one of those little things that really made my day! So all hope is not lost for my social life after all!!



Twilight Ventures

Twilight offers a certain mysterious atmosphere that I have always been attracted to. Maybe it is an outward reflection of my mysterious nature . . . who knows? Or maybe I am just waxing poetic!

Fun fact: I almost called my alias Twilight Princess after my love for the twilight time of day and my favorite video game from the Adventure of Link saga!

I used the red cloudy night from one of the above pictures as inspiration for this painting below. I called it Crimson Night (12X12, oil on gallery-wrapped canvas).

67_Crimson Night
Crimson Night

This one (below) was painted at a slightly earlier time in the evening: Lights on the Lake (8X10, oil on canvas panel).

Lights on the Lake

The beauty that surrounds us even in the midst of a bustling university town is amazing! I just have to keep reminding myself to keep my eyes open!! Pursuing art (even as just a hobby) has certainly helped me be more mindful of the beauty that is all around me – bringing me a step close each time to my personal spring of joy!



Winning Tigers

Two exciting things happened this week:

First: The featured image, my photograph of a couple of tigers sharing a tender moment at the local zoo, won their photo contest in the novice adult category. This was surprising because although I have always loved this picture, it was an instantaneous shot with my crummy little phone and took no doing on my part really! I was just at the right place at the right time.

The second incident has to do with my last aquatic therapy session when I trained with a different therapist than usual, a more senior one and her student. The student led the session that day. She couldn’t have been much older than me (if at all) and was oozing confidence, and she was amazing! She was also driven to work on strengthening my aching muscles and she did let on that my strength scores were woeful. I found it pretty difficult to do some of the stuff she was making me do. This was embarrassing given how fit she was compared to me, being of similar ages and all, but I was honest about my discomfort. BUT THEN . . . after a while, the senior therapist started talking to me about my evaluations and how I am doing, etc. and she said that she has seen many fibromyalgia patients throughout her career in all shapes and sizes and severities – and I was actually at the front end of that scale! I may be woeful compared to others my age, but I was doing OK for a fibromyalgiac!! She thought I was off to a good start with the physical therapy and lifestyle management (fewer working hours, more rest time, energy conservation, etc.), and will probably be able to manage my condition pretty well in the long run as long as I stay committed to reducing stress, building in more “me-time,” and basically being cognizant of my body and not pushing it too hard too fast.

Woot! I hadn’t felt “at the front end” of a lot of things recently, and now two incidents happened to remind me of my potential in one week! I’ve also always had lingering doubts about wasting my time trying to conserve energy and rest more, and have the tendency to push myself until I crash. I have also had little direct encouragement (other than from my husband) to cut work time and build in more recreational/rest time. For the most part, I had considered that aspect of my management scheme to be mostly met with either disdain or general indifference from other people. Now here was somebody in an objective position who openly encouraged more of it!!! She also made me feel like I was doing pretty good being in charge of my condition and she made me feel good about doing some of the things that generally carry a load of guilt and anxiety for me. So whoa! That was a refreshing perspective!

I am so grateful to the powers-that-be for this turn of events. I really felt like I needed a jolt of encouragement right about now and, lo and behold! There it is!

To use Michael J. Fox’s words with modification (from his memoirs), I am a lucky woman.



On Ducks and Perspectives

It seems somehow appropriate to discuss my aquatic physical therapy program (sort of, anyway) with a bunch of duck pictures. So here’s one to start it off with!

White Ancona Duck

So because of my aquatic therapy program (twice a week), I am having to miss work a lot. Basically, I am working part time or less two days a week. I feel like I should make up for this by working longer hours or working more over the weekend. But the truth is, even though I am not working on “work” stuff, driving 20 minutes in each direction plus exercising plus showering before and after is all work for me. Those are all eating up slices of my energy pie that I would otherwise devote to work.

Lately, my whole perspective on my work has kind of changed. In the past I used to be perfectly happy working 10-15 hours a day, including most weekends. Last year, when I still hadn’t learned to quit this lifestyle completely, I was always miserable. I slowly cut back and now I feel like I am doing much better in general (fewer massive flares and lower daily pain levels on average). And now, I feel like they don’t pay me nearly enough for me to go back to being the way I was before!! At one time, I may have said I find joy in science. And I still do, don’t get me wrong. But if you asked me the top thing that I find joy in now, I would say it’s in not being in constant misery!

This duck couple (male/female, yin/yang) just makes me think “balance” – that’s what I am still in search of. And then finding peace in living that balanced life minus the guilt!

I never knew how much I took for granted until I wasn’t able to do them as easily one day. Hell, some days I am just grateful for being able to get up and walk to bathroom! But do I still feel guilty about not accomplishing as much as I once used to? Yup. Do I get stressed that one day I might tick my boss off enough that I have to really call it quits? Sometimes. Am I going to kill myself over it? Not physically anyway; I have been convinced that that’s not worth it. The mental anguish, I imagine, will take longer to settle.

Well, there’s that titular perspective for ya! At any rate, I hope you at least enjoyed the (equally titular) ducks!



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.