Tough Realizations (Part I)

What felt like a whirlpool inside a sinkhole around this time last week, is finally looking like just a simple crater (minus the suction) now. For the past month or so, I have not been able to fully shake off a flare. With fewer hours spent at work or recreation, and more resting on my heating blanket in bed, I feel like I am starting to get this down to somewhat manageable levels. My doctor and I are also working on new medication to see if that can help with the daily pain and fatigue management. The upshot of all of this has been a lot of soul-searching, a healthy helping of frustration and some unavoidable, tough realizations about the way forward.

“Pushing Through” – crocus flowers pushing through the snow in spring (digital, “oil on canvas” finish)

Until last year, I had some hopes of being able to graduate and move on to an academic postdoctoral training job. I had the condition enough under control to be a reasonable (though less-than-ideal) postdoc for few years to gain the training I would need to eventually move on to a more cushy, permanent job. But I rapidly realized that those dreams were castles built in air, for two reasons:

(1) My body decided even coming close to that kind of workload is a no-go.

(2) “Reasonable” postdoc jobs are practically impossible to find. The boss wants a publication-machine, not a person with a life. Add a chronic illness to that? Unthinkable!

Which brings me to the tough realization – that unless a fairy-godmother steps out of a pumpkin for me, I am probably going to have to take a real break after graduating and be out of “real” work; or (what feels like a complete non-option), take on a postdoc job that might be the (figurative) death of me.

In case you were wondering what I mean by “real” work, you are in good company. I have been giving that a lot of thought lately too, and may be topic for a future post in itself.

I feel like some part of me knew all along that it would come to this, but I needed the latest flare to remind me to quit kidding around. I spent the entire last year coming up with every reason for why I cannot be out of a job – everything ranging from financial, to emotional, to career potential and innate ambition. But all of that has come to nothing. I realized that the time is here and now for my husband and I to start revising our budget to account for the absence of my paycheck. And I am not looking forward to the pain that changing health insurance plans will inevitably be!

What I do know for sure is that it would be utter stupidity now to ignore the gut-punch that my body has just dealt me. (Talk about tough love!) And that I need to prioritize my health in a very real way – not in the kind of tangential way I had been doing before. I know things are going to be financially tight for a while, but I am hoping that taking a temporary break will help me get back to a different kind of work later on. Otherwise, I am afraid I might crash for good at some point in the (probably not-too-distant) future and never be able to work at all, and then finances will be tight forever!

For now, I am trying to focus on pushing through one day at a time. I try to keep my chin up that this might be the beginning of a new trajectory that might lead on to a fruitful new journey. I am not one who believes in regrets. I believe that every path we choose at a fork leads us down a different probability. And each of those probabilities will have its own ups and downs, and none will be perfect. So take your pick and let life lead you on!

Love,

Fibronacci

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.

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)