An outing and continued sickie woes (and moans)

I thought I'd post a photo of me having fun. When the ice went out on the bay here, my roomie and I went on an outing. Most the ice was gone, but one beach had these huge floating ice chunks (in fairly shallow water) which we had fun floating on. They were like little rafts.

Otherwise, life has been pretty difficult. I have a decent day here or there (meaning maybe 20-30 % of the energy I had as a well person on a bad day), followed by days of more like 10-15% energy. I can't discount the awful deconditioning I must have gone though over the last 8 months.

My main frustration is just with my inability to do much but lay in bed. I tried a few little 5 min sessions with gardening tasks in the yard, but stuff I could have done 2 years ago is undoable. My legs get weak and shaky, as do my arms and it's much more than weak muscles...it's sick muscles....like with influenza.

It probably doesn't help that my calorie intake is so low (although it is improved). Can you believe 6 weeks after a stomach infection I'm still not able to eat anything but liquid and soft foods? I still don't have my biopsies back (they said 3-4 weeks and it's been 2), but it's

hard to believe some small ulcers and mild gastritis are causing all these problems.

I'm living on mashed sweet potato, soup, soup, yogurt, soup, and avocado with the occasional smoothie thrown in. I've stopped loosing weight, but I'm not gaining any.

I had another tele health appointment today with my specialist. She really is a very caring soul. Sometimes I feel so terribly alone with this illness. People treat it so dismissively on the whole. It's nice to have one medical ally. However, after almost a year of hoping, she was unwilling to prescribe florinef for my OI/POTS due to the fact that a side-effect is ulcers. So I'm back to square one with the dizziness. Extra salt, compression stockings, wiggling my legs.

However, she does want me to undergo an echo cardiogram both sitting and standing. I hope this isn't just more useless testing that will tell me nothing and will end with no treatment.

On the positive, I'm loving the weather (sunny and coolish) and getting excited for gardening (2 months too early for this zone), so my roommate built me some cold-frames. I'm going to have a fun time trying to grow some things early.

I'm even doing a little reading these days for my PhD.

I'm very frustrated by how sick I am after almost 10 years with M.E. I'm mostly frustrated with how few options I have and how little control I wield over my own health. So often I feel at the mercy of every strange whim of this illness and I'm just sick of it. There are 4 things I want to do this week and I just don't seem to cope well emotionally when it comes to "paying the price" for doing too much. I'm just not a good sick person.

Perhaps the wise thing would be to pick one of the four outings and fore go the rest (unfortunately one of them is my taxes...which means an outing...such a stupid thing to have to "crash" from).