Are there times in the day that you actually relax all your muscles and release the subtle, yet ever present physical tension in your body? I try to do this. It’s kind of like a mental exercise but I had better be sitting when I do it. As I take a deep breath in and slowly exhale, my shoulders drop, my neck tension lessens, and even my face feels as if it is softening. Most often any shaking, tremors, or chattering of my teeth seem to dissolve. The room seems still. That moment is really lovely.
But then it happens. My eyes begin a campaign of trying to find something to focus on while the double vision becomes very pronounced. The normal sense in my head of always walking on board the deck of a ship in calm seas seems to feel more like a swirling, tossing storm. If I were to stand, I would be wobbling like a rounded bottom rolly-polly doll. My mouth doesn’t feel like mine and my speech is a bit slurred. And, I often I have to pee then, which adds an interesting problem to the mix. At this point I feel a bit like I am living in two dimensions. One has this really lovely feeling of being physically relaxed, whilst the other feels like a very unsettling experience on drugs or alcohol.
What this tells me is that for so many hours a day I am physically on guard, working at compensating for my poor coordination, my wobbly balance, my double vision, even my saliva production.
My research has made me aware of 26 symptomatic manifestations of MSA-C. Research also points out that not every patient gets all 26 but certainly there are some that we all seem to have to some extent. Whatever the combination you might have, are you constantly aware and consciously or unconsciously attempting to manage their impact on your daily life?
Hypervigilant, Hypochondriac, or Learning to Adapt?
Remember, I am not an MD. That stated clearly, I do think (read: lay opinion) that there is validity in my assessment that what we are feeling is not Hypervigilance. Yes, we wisely check our surroundings for things that may make us unsafe and more importantly, safe: hand rails, chairs, our mobility devices. Hypervigilance refers to the state of constantly assessing potential threat to oneself. It is a state of anxiety, as if one is forever in fear of anything that might cause harm. If you are feeling like this is the case then please talk to your health care provider*. There is much that can be done to help you with this.
If you remember when you first approached your general practitioner / family doctor with three or four of the symptoms, you may have felt like (or even told that) you were a hypochondriac; someone fearing an undiagnosed illness, yet with no clear evidence. I know I personally felt that way because I was presenting a set of symptoms that could be ascribed to diverse conditions and issues.
However, MSA-C/P is symptomatically a complex disease with a variable symptom manifestation array.
However, MSA-C/P is symptomatically a complex disease with a variable symptom manifestation array. We are not hypochondriacs. We have a clinical diagnosis of an illness that is just difficult for untrained eyes to nail down. And that is why we advocate for ourselves and our loved ones to be seen by a neurological expert.
MSA research is very limited but is growing. One area that could use some attention by psychologists in conjunction with the neurologists would be this idea of always being “on” or constantly conscious of the disease and the impact this has on our energy, outlook, and sense of well-being. Anxiety and depression have been recognized as a byproduct of this disease. It makes sense. How does constantly being aware and in management mode of the disease play into anxiety and depression? (That’s my free research question for some PhD student somewhere.)
I think when we actually unconsciously can managed or reduce the symptom impact then we are truly learning to accommodate the problem.
I figure that what I am experiencing and maybe you are too is pretty normal given the situation. Certainly what I am physically and mental feeling is different from what my daily life felt like three years ago. Being alert to our symptoms, attempting to consciously control them and actively mitigate their impact, seems to be an expected reaction to the dynamic situation our brain is throwing at us. When we unconsciously can manage or reduce the symptom impact then we are truly learning to accommodate the problem. We are living into the disease with a brilliant capacity to accept what is. Our body is finding new workarounds and we can continue to thrive.
Journal Prompt…
How are you constantly aware and consciously or unconsciously attempting to manage their impact on your daily life? Describe its impact on you? How can you enlist others to support you?
*I had a great chat with my counsellor this week about this subject and it helped me to distinguish the notions of subconscious caution, vigilance, and hypervigilance, and which produces anxiety.
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