Worry, the thief in the night
Yesterday, I asked Mister three times for cuddling. This was not a question from the void; he had woken me up with a kiss and a promise to cuddle. Well, we go through our day without a lot of it - in part because I am in pain, in part because he is relaxing doing his own thing (which is important to an introvert like him), in part because we didn't gravitate toward each other until the evening.
When we finally curl up on the couch together, me laying against his chest, he asks me, "Do you feel settled now?" And, boy, was that a striking question. Many who know me know how flighty and unreliable I can be. Of late, this has a great deal to do with my body just not having enough energy to even try. I have to measure, carefully, the energy I do use, while at the same time trying to build it up so I can be stronger. In the past, this was simply because I am emotionally high-strung - again, anyone who knows me knows I feel intensely and deeply...it has often been an intimidating factor in friendships, in their gain and their loss. It took a moment for me to answer properly, but when I did, I answered honestly: "Yes, I do." I clarified by adding that he grounds me. I heard the surprise rumble through his chest when I explain how anxious I had been (and have been for some time, for many reasons, not the least of which many of my family face issues with their health).
It honestly doesn't take much for me to worry, and not being able to ground myself with affectionate touches only increased the anxiety. I begin to feel adrift and isolated, and somewhat lost. Usually I console myself with reading; recently I picked up my journal again (though writing is getting harder). I don't think many studies have been done to examine how physical touch affects healing, and effects healing. I do know we see positive results in re-homing abused animals with loving humans, who take on their care with determination, and kindness, reinforcing love with pats and hugs. I do know we know the negative effects of isolation in prison and in life - how loneliness can beget madness or violence. Something in us yearns for comfort. For my part, touch is a craving. It is essential to my nourishment. In leaning against my husband, a part of my center refocused. I felt rooted again, felt tension ease in muscles I did not know had remained tense from the pain and apparent frustration. With deft hands, he massaged my shoulders and back, further relaxing the pain and easing my inner anxiety. Later, as we fell asleep listening to a podcast, one of the hosts said something that really struck me as an addendum to my husband's question: "Don't let worry steal your joy." How much more pleasant could the day have passed, if I had shared what it was that bothered me? How much time have I wasted in the last four months, worrying over this, worrying over that, worrying over whether or night my apartment will burst into flame from lightning, or whether I will fall down the stairs? One of the battles Spoonies face is emotional. Behind the physical pain is emotional, too: the physical pain is a significant driver of it, actually.
It is hard being unable to be committed, or reliable, or being able to give your word honestly (anytime I do I have to stifle a sigh, knowing the possibility of flaking is very real).
It is hard looking into your healthy loved ones' eyes and not being able to keep up in energy: no, the walk I mentioned earlier cannot be taken, I feel like I am about to fall over and sleep for days.
It is hard fighting to figure out how to pay for necessary appointments, fighting with the doctors, fighting to understand what your body is telling you. It becomes, eventually, a feedback loop: I feel bad, so I (physically) feel bad. One feeds the other in increasing tension until something gives. In my life, it's typically the emotions - I have burst into tears in more than one doctor's office, to their and the nurses' chagrin (do they get training on how to deal with panicked patients? In the times I have cried, I didn't get much more than embarrassment and a few tissues). In essence, what I am describing is the endless battle behind the battle: beyond fighting to keep well physically, Spoonies fight to keep well emotionally. There is not very much support or understanding for the mental health behind the physical health in general; even less for Spoonies newly or yet-diagnosed, or whose condition is getting worse or getting to be too much. Last night, my emotional pain was relieved by touch. But it won't, or can't, always be. I am learning now how to articulate appropriately, and wondering what I can do to push for a better resource - I know it begins with us, to express the need and the fight for it (I know, I know, one more battle to add to the others but if we don't show we need it, no one knows we do, or can make an effort for change).
If you have an autoimmune condition, or chronic illness, please, feel free to reach out. If nothing else, expressing your pain can help exorcise it (though, as per one Albus Dumbledore, it does not do to dwell overmuch).
