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Oh yea - Friends... They gave up on me. I just could not jump up and run out to have lunch or go shopping with them when invited. They got tired of hearing how tired I was or me telling them "I don't have the energy to move". They eventually quit calling. In a way I can't blame them. Who wants to hear someone talk about what is wrong with them all the time? Nobody can possibly understand this unless they are living with it! Ten years later and I still hear from my husband, "If you would get up and exercise you would feel so much better". When I have tried the 'excercise' thing if not the following day then the second day afterwards I can barely get out of bed and I certainly cannot run a vacuum cleaner! What I do get done I have to force myself to do it even on my good days. I always know if I over do I will pay for it, yet there are times I over do anyway just because it feels so good to be productive! I just started working again. Three 12 hour night shifts a week. Last night he came in from work and told me I was going to have to pick up the slack because he is going to be working a bunch of over time. I just looked at him and said, "It takes everything I have to get up and go to work and I am not worth a s*** after working one shift, I can only do so much - just be happy I am working but don't expect even more out of me around the house because believe it less is going to get done around the house - you have a choice to make - either I work for a paycheck or I stay home and work - those are your two choices! I told him I wish he could live in my body and with my brain for just a day or two - but I damn sure did not wish on him what I have! He just shook his head - I know what he was thinking... 'oh brother here we go with the excuses again'. He told me a long time ago he was tired of hearing me complain about everything that was wrong with me so I quit telling him how I was feeling, what was going on, when my brain wasn't working. I stopped telling him anything. I only tell him what is going on with me now when he makes his little comments that are suggestive of me just being lazy and the cycle just continues <deep sigh>. I have sent him so much documentation regarding CFS and he has read it. I even took him to my doctor with me once and she explained it to him. He refuses to accept it as real. My doctor even told him that at the time my NK cell count was currently at 63, that it was 26 when I first came in to see her, and the highest it has been since I had been since she had been seeing me was 123. She told him the normal values are between 300 and 500. At that time he talked and acted like he understood and was accepting of my diagnoses. Let me tell you how short lived that was - LOL My kids don't understand it either. I have given up trying to explain it to anyone - it just causes me frustration or I start feeling like they are looking at me like I am a hypochondriac, or a weirdo, but mostly like I am a hypochondriac! I just keep my mouth shut about it all as much as possible and do my best not to think about it. I have tried to deny it to myself a zillion times. I have even questioned myself thinking maybe it is all in my head... So if I can question myself and not want to believe this is real how could I think for one minute anybody else could believe this is real! Just as all of you we have lost our lives as we once knew them to be. Like a major part of us died and is never coming back! Isn't that enough to make anybody morn - isn't mourning the loss of something precious to you a normal human response? Isn't gettind depressed and feeling helpless and hopeless a normal response when we know what we used to be, what we used to be capable of, what it was like when our brains processed things normally and we were never at a loss for the right words, when we could focus on a conversation or the subject at hand, when we could participate in conversations and follow the discussion just like everyone else around us. Know what we used to be capable of... Jumping out of bed in the mornings, getting a shower, putting our make up on, fixing our hair, getting out and running errands and not one time ever thinking twice about it. Sitting around now and wishing we could do those things again... I want to know who would not mourn - who would not get depressed - who would not feel helpless and hopeless under these conditions? Who? Who? Who? Because if there is someone who could I want to meet them in person! Boy have I ever gotten on my soap box! Ahhh - I know what started it. After getting all of 5 hours of sleep last night, waking up feeling like 'The Mac Truck' hit me again last night I have to go take a shower, fix my hair, put on make up, get dressed, get in my car, go stand in line at the post office, go to Target to get new socks and some white granny panties (to wear under my white scrub pants at work), and go to the grocery store to buy food because people around here need to eat. AND I DON'T HAVE ONE OUNCE OF ENERGY TO DO ANY OF THIS! Going to school right now - trying to learn something and RETAIN it? I would not dare even try! By evening time I can't even remember what I did that morning! If I don't make a note of things to remember to do and post it on the fridge it won't ever get done because I will have completely forgot about it by the time it comes to do it! Such is life - I live with it! You live with it! We do the best we can! We constantly battle with ourselves, force ourselves to swing the first leg off the bed then the other... We choose to live and to do as much as we can when we can and what more could we or anybody else expect from us? Question - What gives anybody the right to even expect anything out of us healthy or not? Oh Dear - here I am on my soap box again! I'm sorry for rambling on and on. Going to sign off on this one. Wishing you all a wonderful day! Hugs, Lustrious |
