I want to talk about fatigue

[gran5-]

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.

11/27

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 !!!

[Joealt]

I can identify with everything you are going through because I have been struggling quite a bit with fatigue lately. Some mornings I can't even get out of bed. My mornings are ridiculous. I usually wake up too early, then toss and turn until it's time to take my med. [I stopped drinking coffee because it gave me the jitters]. A new level of servere tremors is playing havoc with my peace of mind. I try to control them because I don't want to upset my wife, which only seems to make them worse and so ultimately end up feeling more fatigued. Oddly enough, when I come to this site I start to feel better. Take care.

[grammy004]

I hear you on the fatigue, every morning I wake up not wanting toget up, even though I slept at least 4 to 5 good hours of sleep.....I am on sinemet and one of the side effects are sleeplissness, my tremors wake me up around 3 am and then I lie awake for a couple of hours going back to sleep around 5am...sleeping for a good 2 to 3 hours I hate this I have never had trouble going to sleep prior to my diagnosis of PD at the age of 48...now I'm almost 52 and SS says I can go back to work cleaning Hotel Rooms like i did for 12 years RIGHT!!!! I wish they could live in my shoes not being able to pay copays and stuff for my medical problem it is hard enough on my husband to just pay our regular bills let alone my medical bills....this site gives me a place where I can vent THANKS for being here!!!

[GrammyC in reply to grammy004]

grammy4... I know what you mean about the fatigue. I had to leave a job I dearly loved after 25 years. I just couldn't do my job any longer and wanted to leave before my boss had to ask me to leave. I had to hire a housekeeper to help me with housework. I can't imagine trying to clean hotel rooms! Keep trying to get your social security. I think they need to automatically give anyone with Parkinson's their disability!

Good luck to you.

[ronn]

Thank you for helping me put a finger on fatigue. I was having a problem deciding what was really parkie fatigue and what was just too many birthdays. You apparently don't acknowledge fatigue or give in to it until you are lying, a puddle, at the foot of the wall. I, on the other hand, use fatigue as an excuse to abandon my excercise bike to see what the guys and gals at the site have to say. ( I wonder how many others are spending their workout time on the computer). Oh, well; in the words of the great Michael J., " I have things I should do, but I'm just so freaking tired, ( his word.not mine). I usually end up going and I'm usually glad I did".

[shakenlady]

I am too tired!! Ha ha!!!!!

[gran5-]

I have decided, a-hem it does not bloody well matter what is causing what I am feeling, I just need to recognize that I need to do what helps me get thru!!! I do enough dissecting and evaluating when I leave the most recent MDs office. Two of my docs are wonderful and the rest (thERe are several) serve their purposes. I am not sure if I ever posted my age I will do that right next to the pic of me in the adaptive ski program. Now, fanfare please, nap time is calling.

[tlongmire]

Someone in Wyoming with Parkinson's told me about ASEA. You can search "redox signaling" on YouTube. She told me it gave her more energy and helped her sleep so I decided to try it. I can say I feel a difference since I started taking it. Whether it is a placebo effect or the real deal doesn't matter to me as long as I feel better.

athletics.redoxscience.com/...

[wifeofparky]

Today is a fatigue day for my husband. He was still in bed when I came home from shopping at noon. He got up for lunch and when I checked at 3 (I work from home) he was back in bed and sound asleep. The lack of sunshine today doesn't help either. Between the SAD and PD, we cannot plan very far ahead. I have learned to be flexible and change my schedule to meet his energy level each day. I will research ASEA. We are willing to ty anything. My thoughts and prayers are with us all.

[gran5-]

Planning ahead no longer exists in my life, rather I express my interest in something and make sure it does not rely on me to happen. It feels OK

[gran5-]

Where did my bit to tlongmire go??? I spent time writing it! Not fair that it vanished. (Don't take this too seriously.)

[gran5-]

Just noticed the above post BIT TO TLONGMIRE ??? any one know what I was trying to say? I, for one, haven't a clue.