Break in the Gloom

The worst part of a seemingly never-ending flare is that it starts feeling like a new sub-normal. You almost forget what it’s like to feel halfway decent, but remember just enough to make you doubly miserable about your new low. It is during those times that all I wish for is a glimpse of the light at the end of the tunnel. If I only knew that the light existed, that the tunnel had an end, the darkness would be so much more bearable!

Luckily, I was able to get just such a glimpse recently.

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Drawn into the Light (7X14, oil on canvas)

For the second time this summer, I went up on my medication to combat the high pain and fatigue levels. Hopes were low this would help. But lo and behold, I noticed a definite improvement in my fatigue levels and less pain/stiffness overall! I was also waking up more days feeling a bit more refreshed than I was before.

That was relieving, but it all really came to a head last weekend.  Last Saturday, to my own surprise, I was able to drive out to a luncheon with a friend, do some grocery shopping and drive us back; and then be able to sweep one room in the house and paint the Sunday after!!

I realize this may not sound like much to a “normal” person, but this was more activity than what I could spend my weekends doing in over a month! I used to be so completely worn out from the work-week, that all I could do over the weekend was stay collapsed and try to recharge for the coming week. Besides, grocery shopping and housework are some of the most flare-inducing activities for me, given the repeated bending/stooping they require. So being able to do all of those things in one weekend – hell, I almost felt normal normal again!

The best part of this was the magical effect it had on my mood! I knew that kind of a high cannot last (and it didn’t – last couple of days have been pretty low again), but even in the current return of the darkness, I do not feel nearly as hopeless as I was before. I was able to catch a little break, a small breather, in the middle of getting my ass kicked by fibromyalgia. And now I feel like I have returned from the edge of doom. I have a renewed sense of vigor to fight this brute, and not feel like I am sinking into oblivion.

I know now that the light exists at the end of the tunnel. Though I may never see it for long, it casts enough of a glow so that the tunnel is now dimly lit. And that is enough for me for the moment.

Love,

Fibronacci

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)

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.

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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.

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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