Plugging Along

It seems I rarely write here anymore.  I'm not sure why, maybe because I feel it serves little purpose, or perhaps now that I've recovered from the flu (took about 6 weeks) and am doing better I don't need the outlet?

Or perhaps because I'm not trying anything new and don't expect to any time soon (there really aren't any treatments for M.E and given research and testing take years, and funding remains abysmal, my guess is it will be at least another decade until treatment is available).

As for POTS drugs I've tried most of them now.  I can tolerate a very very low dose of beta blocker and it helps slightly.  It took 8-10 days of nearly unbearable symptoms to be able to tolerate this small dose (10mg) and given it (unfortunately) lowers my already low blood pressure I won't increase the dose. That said, I do find that it gives me a few hours where I'm a little less panicked standing up. So, I might be able to stand up for 6-8 minutes sometimes instead of 2-3 (or 30 sec) without terrible symptoms.  Like I say, it doesn't take it all away (not even close) but it takes the edge off - perhaps a 10% improvement for a few hours a day.

I am looking forward to spring and more time sitting outside and doing a little gardening.  Every time I try something even slightly physical I find I am surprised at how weak I am. This morning I went out and picked up some spruce cones in the garden and was dizzy and weak within seconds. It is beyond frustrating, there are really no words.  I've been living in the equivalent of an 80 yr old body since my early 30s and if I think about this too much I'm overwhelmed by the anger I feel to be so confined and limited.

I do have good things in my life nearly every day.  I am enjoying not working this semester and sometimes I even feel free of the shame and guilt of it (living off social assistance). I tell myself that it's not my fault I'm so ill and weak and it's not what I'd ever choose (so true).  I'm allowed a few moments of happiness on my good days.  Yesterday I went to a friend's for a 1/2 hour (she runs a rescue) and played with puppies. Two weeks ago I crashed myself to go to a local waterfall with my dad and see it before the ice went out (totally worth it).

I'm signed up to teach an online course in July and August so I've been working on getting that ready when I feel like it - I'm actually looking forward to it.

How are you all doing? Feel free to leave a comment. I hope you all are AWAP.