Here I go again, lots 'o' words. Hope it connects for you
Knowing that others also may be tormented, does not make my experience any easier to deal with. Now I am on a new search. I am not under any delusion that my situation is singular, that I am the only person suffering this pain and fatigue. (back of hand to forehead with mournful expression). With that understanding I have been searching, for people whose experience is sufficiently akin to mine so we can support, discuss or just really understand what we are experiencing day to day. It is a challenge to put my experience into words that are straight forward enough to allow for language and cultural differences. I cut and pasted some of my rantings and embroidered them together.
Right now I am using my iPad to get these thoughts down. I am tickled by all my techno aids. For some of these notes I am using
the iPad keyboard and for some I have Dragon, a voice recognition program so I can write while lying on my back. (Talking for a manuscript is different from conversation I have discovered.)
Fatigue, back to the topic. So many fragments of thoughts to try to organize into complete ideas. For example, I started from the idea of fatigue as a Parkinson's symptom. It is that, but it also exists as elements of many other illnesses, of course.
When Fatigue strikes it requires that I pay attention,
immediately. A cartoon image comes to mind, I'm not sure where I saw it: the character is running along, suddenly there is a wall, s/he runs right into it, slides down to lie in a puddle at the bottom. That perfectly represents my experience. In the real world I recall many times when I made it home from walking my dogs to spend the next hour on the floor inside the front door hoping no one would want to come in.
The feeling itself, Fatigue, is only one aspect of fatigue: the syndrome. All of us know tiredness, that "I just want to go back to sleep" feeling. The fatigue I experience is so much more. This morning I knew I was going to have a "fatigue day". I had plans. They were pretty mundane, but I needed to get them done. Errands: needed to get to the post office, pick up a few items at Albertsons or Target. Instead I spent most of my time resting, dozing and trying to escape into some TV program I recorded earlier for just this scenario. My body hurts my mind is clouded, I can not deal with the pile on my desk, it might as well be Sanskrit. I can not remember what I had planned to take care of and if I can remember I'm not sure I trust the results.
For the person I once was, someone who juggled work and school and three children reasonably well, one of the hardest things this morning is to accept amicably my inability to do nothing, as the fatigue demands.
Fatigue also has made me unreliable. I cannot recall canceling an appointment with a doctor in the past. I have missed or rescheduled 6 visits in the past 2 years.
When I retired and moved west I had intentions. I have always given a substantial percent of my working hours as a "volunteer". For me that meant getting involved in anything requiring my credentials and my training. There were many options, I looked forward with anticipation. I had not factored in Fatigue. There is no way for that puddle at the base of the wall to do anything but find a reasonably comfortable position and wait it out.
As I examine my life, I come face to face with my ego, ...again and again. I don't like having so little control. When my life was moving forward and I was very busy, working and going to school and raising three children it made perfect sense to experience fatigue at the end of a busy week. And, it felt as tho' I was in control, I was running my life. An illusion. It brings to mind the game "Jenga” in which we take turns building towers by finding logs in the structure which can be removed without causing a major collapse. The tower did rise and the gaps grew larger. Now it seems any log I try teeters at the edge of the collapse.
However, I am blessed (or cursed) with a personality that refuses to stay down. I have some errands (remember them?) to run, and for the time being I have left Madame Fatiguee somewhere. Hope she is comfortable. I am going to Target !!!