Hi Barbara,
I know I’m not really ‘black -balled’, I just had a ‘moment’ or so. I think it’s frustrating having elusive medical situations and I become more frustrated (reliving medical experiences). I also want answers so desperately – concrete answers.
I also feel embarrassed that this much is wrong with me. Doesn’t ‘jive’ with my self-esteem and identity. I think it gives me a bit of a ‘chip on the shoulder’ at times. ‘The Perfect Storm’ is not a scarce or unfamiliar term in my life.
Then I go through feelings of denial or not wanting to admit. Sheesh, I still remember back some years ago when I couldn’t turn my head properly and was worried about admitting to that -can you imagine. Wow, it’s just been ‘heaped’ upon me since then.
Anyway, regarding the CSF/water, it’s not confined to allergies. I’m sure it doesn’t happen every time I lean – then again, I can’t really lean without having a host of issues strike. It’s tough to compartmentalize. ‘Divide and conquer’ doesn’t really work so well either. Goal setting – a thing of the past. Time management – forget it (a 10 minute menial task could take hours with all the pausing, having to sit, catching breath, pain, exhaustion, possible heart stuff, nausea, dizziness). Very disgusting and very ridiculous. So unbelievable too.
Anyway, I digress. I don’t have my heart stuff segregated from everything else and nothing seems to be stable. Makes it tough to even figure out patterns (not to mention there really aren’t any dependable patterns). I can’t even allot a standard 70 minutes for something that should take 10 minutes because I can’t count on my body for any predictability. Migraines, pressure, pain, GI issues, yadda yadda.
So weird. I think I just get desperate for a formula. My health does ‘get the best of me’ and, at times, it certainly ‘runs the show’. I guess I’d just like more sensibility and stability. I’d like to have a better ‘handle’ on what’s going on with me. I’m diagnosed with EDS a little over a year ago. Though for quite awhile before that, I’d been spending time enduring health trauma and the stress of doctor mistreatment. I just want to be in control of something that makes logical sense – my own body. It’s something that is almost impossible to grasp – the desire to have control of ones own body (even down to the basics of the autonomic system being afforded its own proper regulation and control).
I phish for answers though I think I am often too confused to put the pieces together. My brain just wants simple logic. I do appreciate the support.
Are You My Mother? remember the book?
Wag the dog. Another title that enters my mind somewhat regularly.