This post was contributed by a community member. The views expressed here are the author's own.

Health & Fitness

Drinking Through A Straw - Hiding

Everything takes sooooooo long these days.  Simple chores like eating breakfast can take an hour or more because I move slowly in the kitchen as I make my "instant" oatmeal, carry it to my desk, wait for it to cool enough to not burn my tender mouth and then feed myself small spoonfuls that can take forever to swallow.   By contrast, it takes very little time to "feed" myself through my button - less than 5 minutes for one or two bottles of supplement and a pint of water. But not nearly as tasty going down.
Getting dressed is becoming more difficult, especially buttons.  I wore a button-up shirt today, and it took forever to get it on.  My usual wardrobe has become T-shirts and shorts or sweats. 
Typing is also harder as I am starting to lose control of my hands and fingers - I can do it, just with much reduced speed and accuracy.
Going anywhere requires twice the time it used to need.  I walk very slowly, take extra care going up and down stairs, and carefully navigate getting into the car.  Means I must carefully plan my days, do less, and consume more energy doing it.
Frustrating.
But (and not to be pollyannish) I am grateful that I can still get into the kitchen, cook myself something healthy and tasty and enjoy eating it.  I am grateful to have a closet full of clothes, even if I choose to not wear most of them anymore.  All those suits, with all those memories, will soon have new homes.  I am grateful to still be able to share my  thoughts. I am grateful for my mobility and independence driving allows.    
I have learned to accept and be grateful for so many little things.  The hour Roz and I spent the other evening cleaning the refrigerator.  A silly text from my favorite grandson.   Hugs from my son.  Not too long ago the true significance of these events would have gone right over my head.
Roz and I have been to a couple of large social events this week - a 50th anniversary party and a big local art gallery opening fund raiser.  We saw many old friends at these crowded and noisy events. I passed on the food and drinks. I could not really have a conversation, but folks knew that about me.  I was so humbled by how open and welcoming all my friends were -  waves, nods, smiles, "How are you?", and lots of hugs.  Megahugs!
I decided months ago as my symptoms got stronger and more visible that I would not hide away.  I am so grateful that so many of my friends and loved ones have also not been hiding from me -  they are accepting of my limitations, do not shy away or turn corners to avoid me, and just make me feel so loved and welcomed. 
So to my friends reading this - you are each an important source of strength for me, and I am so grateful for your love and caring.

We’ve removed the ability to reply as we work to make improvements. Learn more here

The views expressed in this post are the author's own. Want to post on Patch?