I found a gem of a post called 'Illness Etiquette', on the Abide Site, a blog focusing on CFIDS and Fibromyalgia. Some of you have been ill and will relate immediately, as I did. Some of you who haven't yet faced a health crisis that changed your life, well maybe this will be informative. Whatever your health background it, this post is worth a read.
One of the hardest concepts for me to explain to people is 'hitting the wall' with CFIDS in simple conversation or in cognitive chores. It's easy to understand being tired briefly after an intense physical activity, but not a mental task. I can start out a conversation feeling clear, 'normal', etc and, depending on how talkative the other person is, or how many different ideas they're throwing at me at one time, I start to fade slowly at first, then it hits. My mind is fuzzy. I can't follow what they're saying. I need to close my eyes and be quiet.
I've worked long hours until I dropped in the past, taken 26 mile bike rides, sailed all night with no sleep in rough seas. No fatigue, both mental and physical, has ever been his intense or this long lasting after a rest.
Most of my long time friends understand and respect this, but many still can't understand. If I say, on the phone, that I've reached my limit, I'm serious. I've reached it. I can't go through a ten minute, 'let me tell you one more thing' bit at the end. I've crashed. I need to go. Goodbye. Ta ta. Unfortunately, I've had to make the decision not to talk on the phone with some people for that reason. They've never gotten it and my explanation hits deaf ears. Fortunately, enough people DO get it. And it's much appreciated! Ditto for my working on things such as this blog, answering email, etc. I go to a point where not only does my mind no longer function clearly, but my fingers refuse to follow commands and I start typing gibberish. One reason I also rarely do IM. I hit the wall, then have to type repeatedly that I have to stop as the other person continues to type away, ignoring three 'I have to stop now' messages. When that happens, I have no choice but to simply type goodbye and sign off.
That blasted wall. I'm hitting it right now.
Pris
11 comments:
Hi Rae
Yes, we all have our own different limits and walls. The frustrating one to me is the darn mind fog at that point. Can't even just relax and watch tv.
The "Illness Etiquette" is excellent, and should be posted on every hospital door, or better yet, maybe everyone should read and sign it before entering the hospital. The day I had surgery for something fairly routine in high school, I had a bunch of people, most I hardly knew, trapse through my room. I was barely aware of their presence. When I was told how many and just who visited - I was a mortified teenage girl - felt violated.
Thanks and rest well Pris.
I agree completely! When my mother was in for what turned out to be her next to last hospitalization before her death, a cousin arranged to fly down for the weekend. She always brought at least five jammed packets of photos when she came and wanted to go over them one by one. I was already sick then so could only go over for a limited time, but mother and I talked several times daily by phone.
She told me to tell her niece that she wasn't up to looking at the pictures. She was worn down. What she needed was a quiet loving presence in the room. I told my cousin this repeatedly and she nodded her head. She went over separately. After the visit, mother was so exhausted she was on the verge of tears. She told me that my cousin had insisted mother see every photo she brought and listen to every story.
I don't know how people can be so insensitive.
That was a good link. Thanks! We all need that kind of a reminder, even those of us who frequently hit the wall themselves, like me! It is so easy to think one is alone in the world of invisible walls. I also empathize with the phone thing. My hearing is one of my problem areas. When my folks were still alive they would call and each get on a different extension. They would be talking at the same time, mostly to each other, bless their hearts, because I couldn't grasp it. I have the same trouble in a room full of people. Too much input and not enough time to sort it all out!
Arg, yes!! I am too aware of the blasted wall. Wish the thing would crumble & go away forever... 'passes the sledgehammer to Pris...
Yes, I know you are! We'll slam it down together.
yes, isn't it like that?? the two year old who's missed a nap.
P, if ever we meet, I promise not to say a single damn word - after Hello!
I've never had a serious illness, so just can't imagine what it must be like to be in that state permanently; but you still amaze me, how much you get done. When I had that virus thing in December, I think I hit your wall, scrabbled up one side, sat triumphantly on the top shouting 'I made it' - then promptly fell over the other side :-) I'm just picking up the scattered pieces now.
Keep smiling, when you're not sleeping. G.
hi g
can't smile...the tmj hurt:-)
I think I can kind of relate to this... I have on-going, chronic pain in my left hip joint... it comes and goes, on a few occasions has been so bad that my entire leg gives out (yes, I see a chiropractor regularly)... at other times, it feels almost completely normal... but I know about hitting that wall. I've come to accept it rather than fight it. The pain is my warning signal to pay attention to the wall so that I don't smack into it by not giving my body the break it needs...
Anyway, I just want to say that I'm sorry you have to go through this. It sucks to be sick. It just sucks. I wish you healing and strength to deal with your situation. I admire you for keeping up a site this good when you must feel like shit half the time... I really enjoy reading your work and thoughts, even if I don't always comment... keep on keepin' on...
Hi Coloratura
I have to admit that I'm still struggling to learn acceptance. I wish you the best in dealing with your pain issues, too!!
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