I can no longer cope with dysautonomia: the bleakness, the pain, the feeling of hopelessness. ALL OF IT.
I finally said it. Publicly. The secret I’ve been keeping from myself & everyone else since 2011, after two back surgeries in a row, one in April, one in May, the year that put the R in RELAPSE. Compared to 2021 however, 2011 was a walk in the park. Let’s not even talk about 2013, 2015, 2018, 2019. If you’d like to know the details about how I’ve lived life in the darkness of dysautonomia, and to hear about some parts of my life that were as bright and happy as could be, you’ll find them in my story, Journeying Through Hell & Back – AGAIN!
In the midst of this latest relapse, my ability to deal with the devastation of this condition is virtually non-existent. Twenty years ago when it almost killed me by malnutrition I was much better equipped to negotiate the situation. Spiritually I was resigned to whatever would be. Now I’m in a different place. Cancer surgery in 2015 took away all my hormones which I firmly believe helped me cope in the past.
As a very private person, one who has tremendous inner strength, I am admitting I can’t cope with this condition anymore. This is one of the hardest admissions I’ve ever made. I have done so in an attempt to connect with reserved people like me who tend to go inward when fighting invisible enemies. It’s not a premeditated path, just the coping method of least resistance. I’ve since found out the method may have inadvertently hurt family & friends. I pray they understand my being incommunicado a lot is not to shut them out, it’s to shut me in.
AM I A WIMP OR AM I GETTING WISE?
It’s become painfully obvious pretending to myself that I’m coping is not working anymore. The one person I have burdened with symptom after symptom, day after day, year after year, is my husband. I realized I’ve crossed a line. He is not a therapist & he too is in pain over my condition. I might be in the midst of another frightening symptomatic crisis, nearing syncope or experiencing mast cell overload with its weird systemic sensations, crying about what it’s doing to me physically & mentally, while he’s trying to work from home handling conference calls, dealing with clients, colleagues, investment people, or whoever else he speaks to, even the head of the firm. It’s not fair. My husband can’t always pick up the pieces, If I had to go to the hospital, of course he would drop everything. But if what’s happening is not at that level, it’s time I connected with a someone who works with people fighting chronic illness. Someone who can give me better tools than I currently have because my toolbox is empty.
SHAME IS SOMETIMES SHAMEFUL
I can’t believe I’m saying these words. They feel foreign, weird, wrong & somehow . . . shameful. I feel feeble & incompetent because I got through it gracefully 20 years ago – so what’s the problem now? I know the lack of hormones is the major culprit. By the way, I do NOT think it’s wrong or shameful for others to seek help. But when it comes to me seeking assistance do I feel a slight sense of shame. My amazing parents went through the Great Depression, WWII & tons of difficulties over their lifetimes, including life-threatening illnesses, and they never needed any help. My parents are my heroes & I’d like to be at least as strong as they were. Feeling like a weakling makes me feel bad. But I have to turn that around. I’m gonna get over this self-imposed ridiculousness & do what I need to do to acquire better tools for dealing with the darkness of dysautonomia.
It’s taken me 6 years to admit this to myself. So if it takes you a little while to come to the same conclusion, don’t be hard on yourself. Every individual is different & in a different place & therefore requires different remedies at different times. Praying all of you find the resolution that’s right for you at the right moment.
YOU ARE NOT ALONE
My advice is no matter what’s happening don’t be overly afraid of the darkness of dysautonomia – first, because you are not really alone, even if you’re by yourself – second, because even in the dark there is light just beyond. Those of us with DYS have to work a little harder to see it.
Please leave a comment if you can. I appreciate the feedback. You might want to head over to The Forum to start a conversation topic or just read what others have written – that may be all you need to get through the next difficult hour.
If you’re not feeling up to going out & finding someone to help you cope right now, try Zocdoc, Doctor on Demand, or other medical apps available online. Don’t give up my fellow dysautonomiacs!
Photo by Engin Akyurt from Pexels
