"I think we underestimated your neuropathy." My surgeon said this a week into my recovery last May. After the worst week ever. His words could be the story of my life.
It's easy to underestimate my neuropathy. You can't see it. You can't measure it very well. Even I forget the many impacts of CMT. Lately, my CMT gets underestimated (by me most of all) when I get sick.
I don't remember issues with getting sick in my twenties. I caught a cold. I got better.
In my late twenties, I developed bad allergies. I was diagnosed with asthma and given inhalers. In increments of a few years, I got my Chronic Bronchitis diagnosis and I started getting flu shots.
These days, I just can't get better without serious interventions (antibiotics, days of downtime). I had hoped that the issues around my surgery (damaged spleen) were resolved, so my immune system would be back on track. I guess not. This cold sank in deep. Yesterday the doctor loaded me back up with inhalers and antibiotics. I feel a little better today. But I could rest a week. Doing nothing. Which says a lot for me, because 'nothing' is my most challenging activity.
I don't have any research to connect CMT and challenges with illness, but it makes sense. A system that's working its hardest just to get through the day would have a tough time allocating resources to fight a cold or flu virus.
And stress aggravates illness. I know that. I don't need scientific proof (which is hard to quantify effects of stress on ourselves). I know that in my own reactions. And I am carrying long term, heavy stress. My husband is on month 11 of unemployment. The one possible ray-of-sunshine job opportunity disappeared. My boy is a busy three and a half year old with lots and lots of energy. My girl is navigating third grade with reading challenges. My class at school is fun-busy-learning.
I'm not getting a lot of downtime at all. And when I carve out the downtime, I feel guilty or overwhelmed.
So what do I do?
- First, stop beating myself up over it all. I get to feeling like I should be able to manage everything, like getting sick or tripping is part of my own bad decision-making, but I need to take a kinder approach. I do my very best. And I cannot always outsmart or manage the CMT. It is a rollar coaster and I cannot predict every turn.
- Do the ordinary things like take vitamins, get lots of sleep, eat well. Practice healthy habits.
- See the doctor earlier. I tell myself this every time, and every time I feel like I'm exaggerating my symptoms, so I wait for another week to pass and call when it gets really bad. Don't go there.
- Downtime. Don't feel guilty for downtime. (this is the toughest of all for me)
- Stay warm (as much as possible)
- Ask for help. This can be tricky because I don't always know what I need for help. But I did call my mom on Sunday and asked her to take the kids for awhile. And my husband brought me chicken soup. Little help can make a big difference. And I know that I get proud sometimes, or I feel embarrassed, like I should be able to handle it all, but that does more damage in the long run. Help is a good thing.
- Say no. Or trim back on scheduling. Or, however to say it, slow down life. I tend to schedule my days through the winter just like summertime. When the reality is that winter demands a lot from me. And what is possible in summer- chores, social activities, and creative projects- may be too much for a winter day.
- Sleep. Get enough. More than enough. Sleep is wonderful.
A good place to start. The medicine is doing its magic and I feel the fog clearing. My main goal is to be mindful. Thoughtful. Respectful. I will not underestimate my journey. I also will not stop traveling on, experiencing and digging into the juicy stuff of life. Museums, parks, public spaces where germs thrive. I'll bring antibacterial gel. I could put that on the list with washing hands. That feels like common sense.
I suppose as long as I'm teaching, and I have kids, I will be exposed to lots of germs. I'll keep being careful. And hopeful.
And I won't underestimate the big work that it takes. Just to be me.