If I Had One Wish . . .

. . . I would wish for perspective. It is so hard to gain and so easy to lose, especially in difficult times.

Over the course of the past year, I had been able to slowly piece back together some of the shreds of my old hopes and dreams – only to feel like they are now being shattered all over again. And the only thing that feels worse than losing your life, is thinking you have it back and then losing it again.

Featured image: Contemplating the Darkness (12X16, oil on canvas)

91_Contemplating the Darkness
What do you think he is wishing for?

I don’t think I had ever quite fully appreciated how much my FM symptoms had improved over the last year or so. With medication, reduced work load, regular exercises and prioritizing rest, I was able to attain some level of normalcy. It was a new normal, but it was a normal. And for the most part, I was feeling better.

In some ways, I was really thinking that I had this thing under control . . . that I was ready to move on to a full-time research intensive job – something that had seemed unthinkable to me just a couple of years back. I knew I could not stay in that high-stress environment forever, but thought I could manage the less-than-ideal position as a temporary stepping stone to something better. I was finally starting to plan for my future again.

But as the work load quickly ramped up this semester, in preparation for graduation, all hell quickly broke loose. What started as a mild flare is now feeling like a full-blown relapse. The bad weather spell we seem to be in is not helping either. And yes it has been stressful. But if it is just the weather or the stress, I am reacting to them far worse than I have in a while.

The pain levels have risen sharply, becoming more widespread, and staying that way most days even with pain medication. The stabbing pains in my chest, diaphragm and back have made breathing a laborious affair. Talking can take much effort, and sneezing, hiccuping or coughing is making me cry out in pain. The fatigue can feel bone-crushing in itself at times. But sleep is a precious commodity that is not easy to come by under severe discomfort (especially when you’re a side-sleeper and the nerve pain is raging on that side!) – thus perpetuating a vicious cycle.

I can already feel my mental state suffer, despite my efforts to stay calm and carry on. Despite a conscious effort to be friendly and social, I am feeling more moody, less patient, and snapping more easily than I would like. I am genuinely afraid that I am more or less back to square one in my fibro journey. And that it is all my fault for pushing my body too far, as soon as I started feeling a little better.

I feel like I had lulled myself into a false sense of security when I was beginning to hope again. But I am realizing quite acutely that the lifestyle I would need to maintain to continue feeling better is not one conducive to the life of a scientist! Very few grad students, and barely any postdocs, can get away with coming to work around 10-11 AM, working barely 6-8 hours a day, and taking large chunks of time off in the middle of the day for PT/rest. Most work 60-80 hours a week. I am entering a relapse after a couple of months of not even 50!

This was an important lesson for me. I learned that I cannot slow down, feel better, and decide now I can pick up the pace again and all will be well. Fibromyalgia requires a lifelong management scheme. And while I had made some level of peace with that, I was just not prepared for the violence with which my body would react to the idea of temporarily deviating from that plan.

In a weird way, when I was working those ~50h/wk for the month or two, I felt a vague sense of accomplishment. I was trying my best to still squeeze in some rest, and trying to only start work during my “best hours.” So I felt a renewed power, a sense of vigor, from feeling like I may have beat my condition and risen on top of it. I was able to snatch back from it some fragments of my go-getter self that I hated losing the most. But alas, that was not to be. And that feeling of loss for a second time feels like a slap in the face. Like I have been put back in my place.

At a time like this, I keep reminding myself that this current low is not going to be forever. I can still plan for other things in my life. I have changed plans before and I can change them again. There is a lot of things I can do, and this one setback is not the end of the world. This closed door may even open new windows. In other words, I am striving to remind myself to not lose perspective. Yet, that is the one thing that is gained with so much difficulty . . . and yet lost so easily!



14 thoughts on “If I Had One Wish . . .

  1. I am sorry to hear of your condition, and it sounds awfully frustrating as you juggle a full time job. Life is hard that way, and it can feel like you are not getting anywhere. But you have come far in managing what you have and working with it. Hopefully the pain subsides soon. Take care πŸ™‚

    Liked by 2 people

    1. Hi Mabel! Thank you so much for your sweet words. It has indeed been especially frustrating last month or so – those extended flares can be the worst because you can never tell if it’s just turned into a new sub-normal! But I am trying to keep my chin up. So I really appreciate your thought. Thanks again, and take care! ❀

      Liked by 1 person

        1. I understand that well about anxiety. I have a history of panic attacks, and anxiety and depression disorder. Sometimes I know I am having a panic attack, probably for no real reason, but that does nothing to stop it!

          Liked by 1 person

    1. Yes indeed! I think it feels more like a loss of selfhood, something we attached so much of our identity with. I think the real challenge now, for me, is to nurture a burgeoning identity beyond work – something deeper, more internal so I can carry that with me wherever, or however, I end up. Of course, that is way easier said than done! πŸ˜‰ Thank you so much for stopping by and sharing your thoughts with me. I really appreciate the support. Hope you’re doing well. Take care! ❀

      Liked by 1 person

  2. I read this in the morning and have been thinking about it all day. I am going through one of the positive phases of my fibromyalgia, energy is up and pain is down and I have been slowly pushing myself with exercise. After reading this, I am reminded of the temporary nature of our ups and downs. I have been there (where you are) and losing yourself over and over again does a number on you. I think I am starting to understand that rebuilding myself in any shape that resembles who I was before, is fruitless…so thanks for the reminder. Its so frustrating. I hope that this is just a very short, temporary set back and that after a reprieve you can start to rebuild again. Sending you hugs ?#

    Liked by 1 person

    1. Hi Rene! Thank you so much for that sweet note. I am so glad that you are going through a positive phase! I hope that you can find a good pace for yourself so it can become a new (better) normal! πŸ™‚ I agree, trying to rebuild to be like before is useless, and I guess I needed this as a firm reminder of what will never be. That is not necessarily a bad thing though, I just had to be reminded of that too! I am going through some changes in medication now to get this beast under control. So far, it may be working – I caught a little break last couple of days (phew!) but I am afraid to hope too much too soon. This latest flare pushed me to the brink of making some very tough decisions, but I think that will ultimately be the best for me. I will write about those soon. πŸ™‚ Love and hugs back at ya! Take care! ❀

      Liked by 1 person

      1. So good to hear! Sometimes I wonder if we are just the lucky ones. I know that sounds crazy because of how we suffer, but fibromyalgia forces us to make changes that are ultimately better for us. It is so hard to see that in the beginning, when we are mourning our losses, but I am starting to see it now. I hope you are having a great weekend!

        Liked by 1 person

        1. I have to admit that the thought has occurred to me before! That in some ways the situation may be driving me towards what might be a better path in the long run. I am glad I am not the only one who has thought this kind of craziness, LOL! Just wish there were kinder means of achieving the same aim though! πŸ˜‰

          Liked by 1 person

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