We all know intuitively that we have little control over much of our lives, and yet we try to control as much as we can in an effort to cope. For some people, this can become an obsession and even manifest as mental illness in the form of OCD, anorexia and more. Fear and anxiety can be temporarily relieved by controlling things that are seemingly controllable, but this is usually an unsustainable approach.
Acceptance, on the other hand, is difficult because it can feel like failure. I remember the year that we moved to Israel because I was shocked at how powerless I was then. That year we had no car and either needed to walk or use public transportation for every errand. Public transportation can be very slow in the form of a bus, faster with a taxi, but also much more expensive. Buying an American-type minivan was out of the question, as these were twice the price of the same purchase in the US. And so it came to be that I could only accomplish one errand at most each day. I felt useless and powerless, having been accustomed to multitasking and accomplishing more before noon than most people did in a day. But I had to accept the new situation. I found myself slowing down, taking some local classes, and spending a lot more time socializing with people. Life got really really slow! This was frustrating in a way, but also healing, as my quality of life improved. Without a car, I couldn’t spend my time shopping, for instance. I spent more time engaging with people because that was the only thing to do.
Now that I have developed this strange disease, Sarcoidosis, I find myself struggling with the fact that I cannot bank on anything. I absolutely cannot make plans because I don’t know how I will feel the next day, the next week or the next month. This is so frustrating. It has completely upturned my social life as it is impossible for most people to understand. To the rest of the world, fatigue means “tired.” Fatigue in chronic illness means overpowering exhaustion like when a person has the flu. It was explained to me that with the flu, the body is fighting a pathogen so hard that it causes extreme fatigue. The same is true with chronic illness. The body is constantly fighting even though there is no pathogen!
Most days I am able to accept my new situation. However, once in a while, I get very frustrated, mostly when it impacts other members of my family. Like my husband who is looking forward to doing something with me on his one day off. Or my children who are tired of having a mother who has no energy. In fact, yesterday I was feeling so much guilt for never going anywhere with them. We spend our weekends at home for the most part, while other people are outside biking or going away for the day. I hate that. I WANT to do so much but can’t peel myself out of bed.
So what do I do when I have no choice? I pack up the coffee and go. Usually I’m wearing some form of pajamas, either a sweatshirt dress or something of that nature.(See the idressmodest fashion blog if you want to know what a sweatshirt dress is). Showering in the morning is out of the question. Fortunately I now have a very deep tub and do not have to stand anymore in the shower. But, still, this has to be done at night when I feel better. Forcing myself to get out to run the errand that has waited too long or the doctor’s appointment that I cannot miss has resulted in multiple car “bang-ups” due to fatique and brain fog.
On the days that I feel frustrated, I try to “talk to myself” and tell myself to just accept the situation. After all, I have nothing to do. It’s been a year since I stopped working, but I still can’t shake the feeling that there’s something important that has to get done.
Also my brain still wants my body to work out. My body definitely doesn’t want to do that. So I have to make sure that I engage in some sort of physical activity each day just for my mental health. I do this by walking my two large dogs about a mile. On the days that the fatigue is not as overpowering, I do more, like vacuum, shop, and clean the house. I might even undertake a project at home. But boy do I pay for those “productive” days! This past Saturday, I woke up at 8AM, went back to sleep from 11-1, ate lunch, went back to sleep from 2-4, woke up and went to bed at my usual time with no problem! Each of those naps is the result of an overwhelming need to sleep that comes on suddenly with powerful force. The sleep is very deep and satisfying, but not restorative. When I wake up, my arthritis is flaring, or I wake with a headache or with an uncomfortable feeling of fullness in my stomach like after overeating. Good stuff!
My neurologist referred me and my family for counseling so that we could learn to deal with this new reality. At first I was worried about what we were supposed to accomplish. I mean, how much can you talk about chronic illness? But, after a few sessions, I am appreciating the referral, as it helps me deal with the daily frustrations and challenges. I am so grateful to have a doctor who cares enough to have made this referral. Counseling definitely helps me accept my situation and deal with it in the best possible way.
My illness has actually been a blessing in many ways. I am finally able to undertake the creative interests that I always dreamed about but had no time to pursue. I have learned to slow down and accept life’s unpredictabilities and find new ways to engage with people. I am so grateful for social media which allows me to post my frustrations as well as my happy moments. I feel that I have led a complete life, that I am satisfied with my accomplishments and that I am ready to deal with whatever comes down the pike. I can only encourage healthy people to use their time wisely, to do the things they really want to do while they can. Because you never know what weird event life is going to throw at you. In my wildest dreams, I guarantee that, even as a doctor who knew something about Sarcoidosis, that I would have never guessed that it would be the card picked for me!