Hi Barbara,
I, too, kept telling myself that I would ‘ramp up’, I would ‘ramp up’ while doing an hour a day, few times per week Bible study, library, or church, volunteering. Could not figure out what on earth could possibly be wrong due to it all being way too illogical. Tried the ‘delusional way out’ but, no matter how much I tried to pretend, I could not function. No matter how much I told myself in an internal fakey cheery voice, ‘Oh, that’s ok’ about the staggering deficiencies I was experiencing. No matter how much I tried to not worry about it and it would go away – NONE OF IT WORKED!!!
Yes, I understand CFS. I suffered from it for a long time while doctors acted like I was a liar and told me I was making myself depressed by thinking about something bad. What a load of horse ….! My body was, randomly, shutting down and failing me in a vast assortment of ways, every single day. That is what alarmed me so much – I WAS NOT thinking about anything sad or bad. It was just happening. Now, that’s pretty scary – I don’t care who you are or how stoic! My genetic doctor told me, in a non-insulting ‘duh’ sort of way that chronic fatigue is part of EDS.
Like you describe, I couldn’t figure out why I wasn’t ‘ramping up’. Who can’t ‘ramp up’ from 4-5 sedentary hours per week?! In single hour intervals!? You’ve gotta be kidding! That just seems impossible and is completely illogical! Logically, one would be able to ‘build off of’ the base and enhance; add an additional hour, add another day, SOMETHING!! ANYTHING!!
Thank you for your feedback. I need concrete proof for these %^%$^%$% doctors. So sick of it. I hate having to be this proactive. If I can only wring 4-5 hours out of myself, I for …. sure don’t want to spend it as an advocate for my own health. I always thought that is what doctors were for. I’m not a doctor and I surely don’t get paid like a doctor – heck, I don’t even get paid like an earner – since my body won’t allow me to work/earn. I don’t want to be a doctor, I just want to be myself and learn to accept some of this mess that I can’t ‘blow off’. Sorry, can you tell that someone feels a little frustrated. Anyway, I think I’m also going to try to match my bloodwork results with the ones you mention. They’ve not been reviewed with me so I have no idea of what the significance of highs and lows are. Maybe I can post the test abbreviations and someone can tell me what they mean (or what they think they might mean, since it’s not their job to review my labs with me nor should it be their liability). Also, my tell-tale skeletal deformities, etc – are being seen as more benign rather than a sign of something more global. I know, from living in my skin, how badly I hurt and how dysfunctional my body is. I AM POSITIVE THAT TESTS WOULD SHOW THIS! I don’t believe that the highs and lows are no biggie. I don’t believe that having a massive knot of bones that hurts like crap and prevents me from lying on my back (sometimes hurts to sit) is normal. I actually think it might be pinching nerves because I’m having some pretty major leg problems (I think circulatory also). It really gets old.
I went through a stage of thinking I had the type of AIDS that existed in the 1980s (but knowing that I couldn’t have acquired it). I went through a stage of thinking that I must be systemically poisoned. My whole body is a disaster area. Sick part is that, throughout my life, if I’ve said that something is wrong – it’s been ‘ALL OF THAT AND A BIG BAG OF CHIPS TOO’. I’ve never exaggerated anything medical and it’s always been significantly worse than I’ve stated – as PROVEN by DIAGNOSTICS!!!! Where’s that life?? Where are my diagnostics?? Where’s my proper course of treatment?? Where’s my knowledgeable physician??
It’s like all of the diff doctors just want me to be positive and don’t worry. What they don’t realize is that they aren’t collaborating with one another. They don’t realize the global affect of my health situation. I can’t sound crazy so I have to choose one thing to talk about – what a joke! That’s actually the policy too – pick one thing! Seriously! They sometimes act as though if they pat me on the head and cheer me, it will disappear. Don’t they know that I’ve already tried that – for over a year!!! I didn’t try for help until my own, incredibly strong, personal will to be ‘just fine’ had been completely exhausted!! More than anyone else in the whole world, I want to be positive and don’t worry!!!! When a person’s body is blowing up in their face every day for years, it just isn’t that way anymore. As you said, Barbara, it affects everything: social interactions, ability to go outdoors, ability to stand/think/sit, PLAN, set goals, accomplish basic tasks, self-esteem, identity, earn a living, and EVERYTHING ELSE you could possibly imagine!! There aren’t even words to describe it.
I have a bit of a tough time calling it fatigue because the general population believes they can relate to it and thinks, ‘well, take a nap’ or ‘get some rest’. I have to call it weakness (though that doesn’t describe it either). Exhaustion, however, people think that after a good night’s sleep it resolves. It shouldn’t be described by a mainstream word. There is no escape, no relief, no end… It’s a trap that makes no sense. It’s as if I haven’t slept in years. I realize how incomprehensible that is. I am fully aware of how illogical it is. I, myself, am dumbfounded by what I experience. I can’t believe it myself – and, yet, I am trapped in it – every day! Crazy, right?!
Thank you so much for posting, Barbara!