I have been living more and reflecting less, which is not necessarily a natural fit for blogging, thus the yearlong silence here. After a decade of living within strict chemical sensitivity parameters and another decade devoting the bulk of my time and energy to pushing those parameters farther away, I had reached a place where I could physically do more. And so I did. I have been working and occasionally traveling in the past year. My activities have been limited mainly by my own restraint since I did not want to repeat the pattern of overdoing it and losing hard won improvements.
This phase of my life has come with some mixed emotions. I am so grateful to be able to DO things. I am angry about the years where I couldn’t do these things which feels like wasted time. I am anxious to push and do more to make up for wasted time (though I know it hasn’t been). But I am also tired from pushing so hard for so long that I am happy to enjoy this phase. Some evenings when I am still energetic and clear headed, even though I have been out in the world doing things, I am amazed that other healthy people might feel like this all the time. If most people feel like this, why aren’t all the worlds problems solved? However, sometimes I indulge in a completely nonproductive activity for hours like reading a book simply because my head is clear enough to do so.
You’d think I would be ready to take on the world or at least my long list of things I’ve missed out on. But I find that two decades of living with some degree of discomfort, dysfunction, or pain has made my assessment of risk different than other people’s. There are so many situations I thought I would be excited to try once I could and instead I am uninterested in the physical discomfort it might bring. Kiteboarding? Fancy restaurant? Music concert? Nope, not worth the sore back, the indigestion, or the late night. Instead I am doing rather mundane things but doing them painlessly which feels like such a luxury.
There are also more and more people in my life who don’t even know that I have MCS, or what that means, much less what my life has (or hasn’t) been for twenty years. Yet, it is and will always be a huge part of my self identity – this thing that happened to me, rather than something I achieved.
Obviously, these are all contradictory thoughts and so rather than trying to resolve them, I’m just letting them go. A less examined life has long been goal of mine. I have been similarly lax about checking in with my online MCS community. I know some patients, who are using limbic retraining as part of their recovery, deliberately choose to avoid dialog, including online support groups. I can understand the need to avoid additional stress of other people’s pain as one heals. That was not my intent; connecting with fellow patients has always been a source of comfort for me. I just truly have spent very little time in front of a computer thinking about my health problems. I have spent time with my health care professionals, my weekly health journal, my kitchen, and anything I can do with moving my body outside – all with the goal of staying healthy. I have spent time with my husband and kids, and with my tutoring students and text books (hello, working brain). But less and less of my time goes to preparing for a situation, recovering from an exposure, or tracking symptoms to isolate a new trigger.
For all that it feels like an impressive recovery, I have no magic cure to share with you. I don’t think this illness has a single treatment that would fit us all. And though I have found a combination of treatments that have improved the sensitivities significantly, I am by no means cured and currently see no way to get there. Regardless, I will try get another post out soon that explains what I have been doing that helped me.
In the meantime, consider today’s post a shout-out to all my spoonies, the MCS/TILT/EI tribe, who are probably feeling even more marginalized in today’s political climate. I hope that you find some measure of healing in the future and some moments of grace everyday.