Weathering the Daily Struggle

“There’s a lot going on right now.”

That’s been a common refrain for me since I started a new job and my husband had to have emergency knee surgery. I know it sounds like an excuse when I say that about why I don’t have time to read, or to paint, or hang out with friends. They probably think it is an excuse too. But the one who used to take care of everything else so I could work and pursue my hobbies is now severely limited in what he can do. So it’s all on me now. I just hope that whenever I say that, nobody asks me what exactly is “on me now.”

Because the truth is that there nothing going on with me right now that hasn’t been going on forever in everybody else’s lives. But with a chronic illness like fibromyalgia which limits my daily energy levels, those same daily activities feel like they are draining the life out of me, when for everybody else they’re just mildly annoying chores that they mostly don’t even think about.

To say that daily living chores and a fairly physically non-taxing job is wearing me out, I imagine is eliciting eye rolls right now. Like I should stop whining and suck it up at adulting. I am embarrassed to even admit it; it makes me feel weak and stupid. But it is also a frustrating reality I cannot escape.

For a while, I was taking care of my husband’s personal care routine when he was mostly bedridden. I will spare you the grisly details; suffice to say it was nothing physically taxing for a normal healthy person. He mostly took care of himself, all I had to do was arrange his things where he could reach them, and clean up after him. But now that he can hobble about the house, I don’t even have to do that. He’s even taken over meal preparations again, so we don’t have to eat like freshman undergrads anymore! (If you’re wondering about that last statement – I’m a foodie who doesn’t cook, and seriously lucked out with a husband worthy of chefhood!)

The rest of the “lot [that is] going on right now” is just everyday stuff that for most people is mindless living. I wake up early, limp to the kitchen for coffee and breakfast, I get dressed and work a full-time job. On the weekends I clean the house, do the laundry and get groceries for the week.

Nothing at all that seems out of the ordinary! Everybody I know does all of that and more, and still finds time for friends, books, hobbies, and exercise.

And yet yours truly collapses every day after work, unable to even consider going for the evening exercise class. I look forward to the weekend when I could rest. But even with my “tips and tricks” to ease my load, the weekends often end up being worse than the weekdays.

Laundry, house cleaning, dish washing, all take more arm and leg work than one might imagine. And I don’t even do a particularly thorough job of any of it. The walking and frequent bending/reaching during grocery shopping has always been hard for me. So we switched to online groceries that we now simply pick up at the store. But carrying those home, putting them up, all eat up pieces of my energy pie. Some activities eat a larger slice than others, and at the end of the day, I am barely left with crumbs.

So I am left weathered every night either passing out in exhaustion or unable to sleep because of the pain and discomfort. I am nearly continually in a flare these days, rendered functional only by virtue of tramadol. And a cold I fought for a week did nothing to help that situation.

I am also left cringing in shameful embarrassment at how far my life and fitness has fallen. For a long time it seems I had stopped thinking about how much fibromyalgia intruded into my daily life. When my husband took care of practically everything, and encouraged me to save all my energy for things that bring me meaning, peace and happiness, he did it all so apparently effortlessly! He never made me feel indebted for all that he does. Though I was always grateful, I now have a renewed level of appreciation for him and for everything he did. In doing them, he was saving me massive slices of my energy pie, because all those activities that are nothing for him are seriously draining for me. But most of all, I am grateful that he did all of that without making me feel any the less for not being able to be functional like a “normal” person.


I know this post ended up being something of a rant, but sometimes cheer takes too much effort. My hope is that this post sheds some light on what everyday life can be for someone with a chronic illness like fibromyalgia. And if you are a “healthy” reader who has an invisible illness warrior in the family, I hope this helps you understand what a struggle just everyday living can be for them, and why sometimes they are unable to partake in things that take no effort on your part.

The last few weeks with my husband’s immobilized leg haven’t been all bad however. There have been silver linings and moments of reflection. I promise to write more about them in a later post.

Love,

Fibronacci

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

 

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!

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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!

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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!

Love,

Fibronacci

When you Keep Hitting a Rock

Sometimes it is hard to feel like you are making any progress at all, no matter how hard you try. Every time I think I have something figured out, it turns out that I had missed taking something else into account, so I am really back to square one. You would think as a scientist, I would be more accepting of failure and be able to gallantly pick up the pieces and move on and try again. But here’s a little secret about our lot – we’re human too!

I have heard it told many times that grad school can be a hard and uncertain place. To be honest, I had never really thought of it that way. I had entered my current lab as an undergraduate and dove right into the research because I found it fun and interesting. Over time, I had worked on many different projects and enjoyed learning about a variety of topics and many different techniques. I never really worried too much about “what’s next” because I always assumed I am going to continue having fun the way I am now, though perhaps in a different location and doing different things.

Yet now, I feel rather uncertain as I edge into my final year. My life has been in a flux recently and I feel like I cannot devote as much time as I should be towards my research. I have several publications but much of that work was done before I developed fibromyalgia. There is no way I can keep up that level of productivity with my current hours. I cannot imagine who would want to give me a postdoc job (something I had always banked on) and so I am having to look towards other directions for jobs for recent Ph.D.s. That is an scary outfield period for anyone trained only to find a job in academia; it is doubly hard for somebody who is also juggling a chronic illness and wondering whether the job description will fit their needs, when and how to disclose their problem, what types of accommodations to ask for and when and how, etc. Somewhere in the back of my mind though, I am still hoping I can do a postdoc with an advisor who will be willing to let me work at my pace, so I don’t have to jeopardize my health for my career – something I am convinced is totally NOT worth it! But my hopes are low on that one.

On the health front, I feel like I am shooting completely in the dark. Every time I hit or miss, I take a note of that and make a mental map of the place that I am in. Trouble is, I am never quite in the same place and a target I hit once may never get hit again. I try the scientific method when deciding what works and what doesn’t, or what may be the best approaches to tackle a flare with, based on published literature and personal experiences. But keeping an objective view of yourself as the subject while also being the observing scientist is hard on the best of days. It is made doubly difficult when your brain goes foggy and a storm descends on your senses.

All of this brings me to the featured image, my 11X14 oil painting titled “Inner Turmoil.” I painted it some time ago when I felt like the wave that is doomed to crash on the rock surface on a dark and stormy night, yet one that insists on doing it with flare!

Along with portraying thoughts I could not put in words at the time, it also made me ask the quintessential question of why the wave doesn’t give up. I suppose the simple answer is that it simply cannot! It is not its own boss, it is governed by the gravitational forces of the earth and moon. And I think we are all somewhat like that. There is a part of us that stops us from ever giving up. Graduate students and chronic illness fighters are both known to be a resilient lot. We have to be I suppose! And so we keep chugging along and keep hitting that rock, chipping away at it a little at a time, hoping that one day we will be able to wear it down and flow masterfully over it.

Love,

Fibronacci

P.S. A huge thank you to my dear friend S.G.B. for providing a lovely home to my painting. I hope the painting sings for her the same tune of resilience in the face of all odds as it is does for me.

 

The Whirlwind in My Brain

Most of us with chronic illnesses have our own coping mechanisms. I rely heavily on visual imagery, meditation and art therapy. And they are not all exclusive of each other.

Case in point: the featured image. This is one of my original oils on a 11X14 canvas, titled “In the Darkest Hour Before Dawn.”

The image came to me as I was trying to meditate and visualize my feelings of pain, loss of control, exhaustion, frustration and a desire for peace. Being able to paint it later (much later!) felt almost like a release! It can be so difficult to focus when the pain is overpowering you, kind of like you are stuck in a whirlwind that is inside your brain. Being able to make a tangible image out of it felt oddly empowering.

Love,

Fibronacci

P.S. Just for full disclosure, I am hugely inspired Vincent Van Gogh!