Unanswerable Questions

If you know me, you know I talk a lot. When I was a child, my mom said that if there was no one for me to talk to, I would probably talk to a brick wall. She was mostly right except that, instead of the brick wall, I it is more likely I would talk to myself.

Because of this, I was stunned twice this week when I was left with absolutely nothing to say.

The first was when someone asked on Facebook about what it physically felt like to have FTD. I can't remember ever thinking about that before. Sure, I often think and talk about the emotional, psychological and medical issues but physically, not so much.

Of course there are the usual physical issues like falling, tripping, loss of strength and energy, tremors and general lack of coordination, but those lead more to emotional and mental frustration, embarrassment and discomfort. .

There is pain involved when falling but, thinking about it, I kind of don't even focus on physical pain. Except for the FTD headaches...  there is no ignoring those. My answer to the question was something like, "Huh? I don't know!"  It hit me as strange. I know I do experience physical pain. When my muscles are weak, my arms and legs hurt if I push them to keep going. They will often feel heavy and uncomfortable but it is the mental frustration that comes to mind, not so much the physical discomfort.  

I am usually covered in bruises from bumping into things, like furniture, not only from falling. If I look at the bruises, I know they should hurt, but I don't feel it. I am guessing that the pain doesn't register with my brain. To further confuse things, there are times that someone will gently touch me and I feel it as horrible pain. I can grab a hot pan without a potholder, but don't touch me!

One day this week, my daughter came to my room because it was past the time I am usually up and about. She asked if I was okay. I answered that I didn't know, that I just felt like something was not right. She inventoried the possibilities and I just kept saying "I don't know." She encouraged me to get up and see how I was, which I did. It wasn't long until it was very apparent what the problem was and it related to scallops we had for dinner the night before. I won't go into the physical details, but there was no doubt that the scallops were off.

How could I have not known? My body had to be feeling at least discomfort and probably pain. Between this experience and drawing a blank when asked about physical feelings of FTD, it was an "Aha!" moment.  I still don't have an answer. Yet, when trying to think about it, all I come up with is examples of when I am physically worn out enough that I cannot keep going. I will go for days of simply existing from the lack of energy.

That would have to be my answer of how FTD physically feels, "Exhausting."  It is exhausting both physically and mentally which leads to a lot more emotional and mental issues that drag me down more than the physical.

The second question of the week was when I was getting my Covid vaccine. The nurse, after my daughter and I needed to explain my FTD due to some confusion I was experiencing, turned to me and asked, "So what do you do to keep busy?" What came to mind is that most days, just continuing to live is enough. Knowing she would not understand that, I said "I guess nothing."

She turned to my daughter who, fortunately, has a much quicker thinking process. Paraphrasing here, she kindly said that I still do pretty much everything that I used to, just not as well and much more slowly. She went on and explained how much of my energy goes into advocating for FTD and for those of us with FTD. God bless this daughter of mine! 

My reaction was, "Huh, yeah, that. I guess I do have things I still do." The truth is that I have so much frustration that I CAN'T do everything I used to be able to, I don't really stop to think of what I still CAN do.

So what does having FTD physically feel like to me? The answer would have to be it makes me feel totally exhausted because doing anything most often requires more energy and ability than FTD has left me with. When I get busy, I forget to take breaks, rest and drink water, which all add to feeling things physically. Everything else is frustration. Even when I experience pain or discomfort, the frustration that I do feel those is stronger than the actual physical feelings. How can I explain to anyone that FTD leaves me so physically and mentally exhausted that I am unable to know or  express how I "feel"? 

There are just things that FTD does not allow me to understand, feel or express.