Divine Retribution

Monday

Summer was officially at an end. I was consumed by a feeling of how little I had accomplished over the last 3-4 months.

I felt I was becoming lazy, and too used to being “comfortable.” Grad students aren’t meant to comfortable! So what if I felt tired? Graduate school is notorious for sleepless nights! Yes I was always achy, but my pain is not that bad! I should be able to push through the tiredness and the pain. Enough with “babying” myself. Mind over body, I told myself. I could do this if I really put my mind to it.

I know this kind of thinking is stupid! But at the time I wasn’t thinking straight:

I spent practically all summer in a never-ending flare, basically at a new sub-normal, and I was frustrated with it. I had just begun to figure out my new normal, but before I could even settle down, I was forced another level down. The pain has been so deep and constant that I often don’t even realize how much pain I have been battling until the shroud lifts for a moment.

My life felt out of balance and I was having to figure everything out anew, and I was tired of it. I was tired of being on the roller-coaster. And in my mental fatigue, I was beginning to doubt myself and my own feelings regarding my health. I was beginning to wonder if it was all in my head, if I was essentially making it up – and if so, maybe I’d be better off just ignoring the assertions my body was making, and eventually I might snap out of it!

I doubt I truly meant to be as cruel to myself as I was. It was a moment of weakness when I gave in to my own personal critic. Left alone, it would have been forgotten in a few weeks as I regained my mental balance. But spiteful words released into the ether rarely dissipate on their own. And this time, they were picked up by the wind and heard by the universe. Loud and clear.

Tuesday-Wednesday

I stuck to my vow to try to push myself just a bit more – I shortened my rest time after PT on Wednesday, and tried to go to work early. I drank more coffee to stave off the sleepiness that almost always engulfs me afterwards. It sort of worked. I was beginning to feel that I could do this!

Wednesday afternoon

I had noticed the traffic was unusually heavy that day. This remained the case the whole afternoon, even when I went to pick up my husband from work. And got even worse as I tried to make my way back to the lab. I was beginning to get seriously achy and tired by now.

This might not sound like much for a normal person, but sitting for long periods of time is extremely painful for me. And when I am driving, it takes up extra pieces of my energy pie in addition to just sitting. And now after exercising and spending several hours on the road, every minute that my foot pressed the brake, I could feel my back breaking. Not to mention, every thing took three times as long because we were moving at snail’s pace!

It was 10 PM when I finally got home. I was now out and about for over 12 hours. Needless to say, I was practically dead.

Thursday

Despite the “resolution,” I decided to take it kindly on myself that morning. I limped into work by noon. My boss must have noticed my tardiness, because he made some snarky comment implying my ineptitude.

Friday

I did not feel too bad most of the day. I thought the extra rest the morning before had done the trick! I drank extra coffee again, and reduced the after-PT rest time so I could go back to work sooner. I thought this was working out pretty OK so far, and I wasn’t really even pushing that much! Essentially, I thought I had gotten away with it!

That night, my husband suggested going out to eat. I did not resist the suggestion at first, but felt very put off by the crowd at a couple of the places we drove past. We settled for Chinese take-out, and got our favorite. After a couple of bites of the “amazing chicken,” it hit me.

I felt a swoon come over me, followed by rush of nausea. I suddenly felt I had sprinted a marathon, and needed to throw up – out of exhaustion – at the finish line. I couldn’t finish eating and needed to lie down immediately.

Yes, I had crashed. I should have known it was coming, but I had thought (hoped!) that I had gotten away with it.

I hadn’t.

Saturday-Sunday

All throughout the weekend, I continued to feel like a train had run over me; and then once the gates lifted, every car that was stopped behind the tracks for a mile, also ran over me one after the other.

For large parts of it, I could barely get up from bed to even use the bathroom. I have no appetite. The fatigue still has me by the throat. I have never had chemotherapy, so I cannot be sure – but I think this must be what chemo-exhaustion feels like.

Divine retribution for my stupid, stupid thinking!

Mind over body is all well and good, but the body always has the last say. The exhaustion that comes with a chronic illness is not like regular tiredness. And the pain of fibromyalgia is not like just getting random aches and pains. One does well to always remember that!

Love,

Fibronacci

Featured painting: Dream Passage (8X10, oil on canvas)

Weekly Photo Challenge: Rare

Few things are more rare than snow and ice in the subtropics! But when it happens, the beauty can be breathtaking.

And there’s that thing about beauty – it can hide in the most miniature of things, and bring immense joy when you open your heart and find it!

Love,

Fibronacci

Weekly Photo Challenge: Fun

I know I have shared this painting before in my post about humor for pain management. But it was just too appropriate for this week’s photo challenge theme, so bear with me one more time!

For those who don’t know the story behind this painting, I have described it in detail in my original post (linked above), but here is a short version:

On a recent vacation with my friend’s two young daughters, my husband and the girls decided to play a silly joke on the server by dropping all our spoons in our glasses. The confused look on the server’s face as she tried to gauge the bizarre situation without letting it show in her voice was classic! It was a supremely dumb joke that then became a bit of the tradition with the girls. And since then they have sending us spoons-in-glasses pics from many of the restaurants they now visit.

In order to commemorate the birth of a new dumb tradition, I painted them the picture in the featured image and called it “The In-Joke” (for obvious reasons, since few who weren’t there to witness the event are likely to see the humor in it).

The real reason I wanted to share the painting and the associated story again is this:

I read a beautiful article today on Light Everyday about how we often fail to realize how much fun we are having, all the time, in the course of living our lives, because we get so caught up in the preconceived notions we hold of what “fun” should look like.

At my age, a “fun” vacation is marketed to look either like a luxurious girls-time-out in a beach-side spa resort with a snazzy nightlife, or an adventurous backpacking trip across the mountains at the end of which you are supposed to “find yourself” (whatever that means). Not dropping spoons in glasses with two young children at a tiny diner on a family vacation, as I squirm on the chair to try to ease my pain best I can! Yet that was one of the funnest vacations I have ever been on, and that particular memory is one of my most cherished ever, and one that we keep referring back to every time we eat out!

My current point of view, however, is relatively newly developed. For a long time, in my past life as a healthy person, I was also blinded by what “fun” should look like. And I resented the fact that I never had enough money or the personality to have it!

It is unfortunate that I had to develop a chronic illness to lift that veil off my face and finally see how much fun I was having everyday, just doing everyday things, nothing special or out of the way.

calvin-hobbes-summer-is-doing-things-or-nothing

I have fun every day, just hanging around the house with my husband, sometimes in different rooms with each doing different things, or watching TV shows/films together in bed. Nothing we do looks like “fun” – in fact we might be the definition of “boring” – but it has been a fun life for us in our own way!

Calvin-and-Hobbes-Summer-Vacation-Comic

As I keep coming back to this idea of finding the good things that fibromyalgia has brought into my life, finding joy in small things is definitely one of the big ones! I feel very lucky to have been given the opportunity, even if it came disguised as fibromyalgia, to realize just how much fun my life is!

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

 

Getting Honest about Chronic Pain – Part I

I often struggle to explain what chronic pain really feels like. Yesterday, my husband came up with this wonderful analogy for me, from everything I have talked to him about. I think this works, as long as the reader is a person who hates the feeling of wet shoes/feet as much as we do!

Chronic pain is like going through school everyday with wet socks and shoes, like if you had to walk through a puddle on the way. So you are forced to walk all day everyday in those squeaky shoes that embarrassingly spout water out the front, while your feet feel soggy and icky. After a while, you stop noticing the wetness, but you know they are still wet because you squeak when you walk and the water still comes out the front of your shoes. You look at your feet – and they look an unhealthy shade of pale, the skin all wrinkly from being soaked all day, and you have that soggy, icky, wet smell about you. After a few days, you will probably start developing some nasty foot fungus from never being dry. All you want is one day with dry feet. But you know the next day on your way to school, you will have to walk through that puddle again.

b4ppri

That wrinkly, unhealthy, icky hypothetical foot has been me, recently, as I have been flaring nearly every day for several weeks. The gnawing pain has been so ingrained that I am not even sure I can put a number on it. The exhaustion when I crash could be mistaken for the smell of death upon me. All I want to do is curl up in my snail-ball of tears, let out the pain, frustration and anguish over losing so much that was dear to me to this unending beast. But crying takes some serious energy – energy that I don’t have to spare. The only way I can describe my existence is that it’s like I have a massive worm that is inside of me, and it is eating me alive from the inside – body, mind and soul.

Pain is always a part of life. But when the pain is acute and lasts for a short amount of time, it means something when one goes “ouch” from time to time. I feel like I don’t even have that luxury now. If I had to vocalize my pain now, it would be a long low “ow” moan that is a never-ending background score, with occasionally louder higher-pitched “ouch-es”. But that would also take way more energy than what I have to spare. So I settle for contorted faces and/or unhappy cat moans when things feel out of the new-ordinary.

40f

Though fibromyalgia has given me the unique ability to empathize with others when they are in pain, sometimes I cannot help but feel some envy towards those whose pain will eventually heal and pass. People can sympathize with them when they voice their pain because it is an isolated/recurrent but brief event in their lives. In a few days/weeks, they will feel better and go back to being normal. Their energy level is often also largely unaffected throughout the episode.

But with a chronic illness, people eventually tire of hearing your painful notes and you never go back to being normal. When the energy flags, it is hard to explain why you cannot pop a couple more pain pills and be on the go; because you have been on pain pills while you have been going, and now this is the end of the line for you. At best, people are awkward around you when you express your pain or fatigue. At worst, they openly criticize you or blame you for faking it. So those with chronic pain end up internalizing it, and further isolating themselves in the prison that is their body and brain.

At least I am lucky in that I am not completely isolated. I have friends who are kind to me. Perhaps some can even take a stab at what I might be going through from time to time. I am eternally grateful for a husband who I feel lives inside my head, so he knows exactly how I feel. He tirelessly cares for me, listens to me, and his support is everything I am rebuilding my life on.

What I am rebuilding my life into, however, I am not sure. And I am also not sure I have totally escaped my own mental prison. Those are perhaps the subtler, more indirect effects of chronic pain. More on that in Part II!

Gentle hugs,

Fibronacci


 

Weekly Photo Challenge: Narrow

Where The Mind Is Without Fear

by Rabindranath Tagore

Where the mind is without fear and the head is held high
Where knowledge is free
Where the world has not been broken up into fragments
By narrow domestic walls
Where words come out from the depth of truth
Where tireless striving stretches its arms towards perfection
Where the clear stream of reason has not lost its way
Into the dreary desert sand of dead habit
Where the mind is led forward by thee
Into ever-widening thought and action
Into that heaven of freedom, my Father, let my country awake.


As the cost of education keeps rising in my home institution and other places, as more and more people seem to be engulfed by fear and paranoia in the world, as reason and truth become buried in a world driven by emotional lies and materialism, and as a fibromyalgiac who feels she has lost her place in the world – this poem rings true to me on so many levels!

One day, I hope to awake in that heaven of freedom as well – freedom from the pain, the fatigue, the expectations of me as an academic, as a person battling chronic pain, freedom from the traps my own brain sets for me when I am in the throws of anxiety and depression – and I hope to awake into being a more balanced, wholesome person.

Love,

Fibronacci

Questions I have for Fibromyalgia

As a scientist suffering from a poorly understood condition and as a patient frustrated by its unpredictability, I have spent many miserable days and nights wondering about the many idiosyncrasies of fibromyalgia. On sleepless nights, the patient in me has a conversation such as below with the scientist in me:

Patient: Why does bad weather (actually, a change in temperature/pressure in any direction) make my symptoms worse?

Scientist: Do humans have atmospheric sensors in their body like some animals? How does that signaling work to affect pain perception?

Patient: Why does the pain get worse during my periods?

Scientist: What is the connection between hormonal levels and pain signaling?

PatientWhy does the pain get worse at night, right when I am trying to sleep?

Scientist: Is there any connection between the circadian rhythm and pain sensitivity/signaling? If so, what is it?

PatientI wish I could sleep . . . I am so tired . . . (poor sleep makes pain and fatigue worse)

ScientistIs there a feedback loop between the circadian rhythm and pain sensitivity? Why do patients with fibromyalgia experience alpha intrusions and not get restful sleep?

And the quintessential:

Patient: Why me? (yes, I know it’s cliche)

Scientist: What causes inter-individual variation in pain sensitivity? What genes are involved in those pathways and how does environment play a role in the development of the chronic illness?

As an epigeneticist (one who studies modifications on genes responsible for fine-tuning their function), that last question is especially close to my heart. I have a suspicion that a significant fraction of the population is probably born with genes that make them sensitive to pain perception. But only 2-4% of the U.S. population has fibromyalgia. So what factors are involved in determining who with the disposition actually develops the condition?

These are just questions for now. I have no answers for most (if not all) of them. But we need to find the answers. The more answers we have, the better we can treat ourselves, future patients, and perhaps even take preventative steps. So until then, perhaps that “why me” question is worth asking after all!

Love,

Fibronacci