I’m just getting through a day at a time at the moment, feeling very MEish and quite unwell. I’m trying hard not to let it get me down, but meal times in particular are a struggle: I have zero appetite, awful nausea and every time I eat I feel like shit afterwards for a good hour. Driving is also making me feel yeugh for some bizarre reason, which is a nightmare considering I live in the sticks with no public transport and I have to drive to survive.
I’m trying a LOT of distraction activities to take my mind off the situation, energy, brain fog and muscle weakness permitting. As you all know, I have a passion for nature photography and at this time of year there is a lot going on. Two weeks ago I visited a local Bluebell wood which is in full bloom. It was a rare sunny day (we’re having a terrible Spring so far weather-wise here in the UK), the insects were buzzing, the birds were singing and the perfume from the flowers was to die for. If Heaven is anything like that wood, count me in:
The stats for my blog show that I’m still getting dozens of visitors to my Hand Blog Post every single day. I have no clue who these people are or where they’re coming from but I’m fairly sure they don’t have EDS so why they’re so fascinated by this particular post is a puzzle. If any of the hand visitors are actually following my blog do fill me in, I’d be interested to know what the similarities between our diseases are.
I saw a link to some research being carried out by the Open Medicine Foundation on ME/CFS, particularly at the severe end of the spectrum, hurrrahhh! I’ve touted my mast cell theory to other leading ME researchers and haven’t even had a reply, but undaunted I contacted Linda Tannenbaum, Executive Director of the OMF, asking her to at least consider that mast cells are implicated in ME. I received a lovely reply and her promise that, yes, she will pass on the link to my Canary post to her research team 🙂
I’d love to be trying out some new recipes at the moment, but my health is making it impossible. I did try the pizza recipe though and it actually turned out not half bad. I used a 250g tub of Quark cheese instead of yoghurt, and reduced the flour to 250g to compensate but still found there was too much flour so would only use 200g flour next time. I used my red pepper sauce with some fresh basil in rather than tomatoes, and added some thinly sliced veg to make it more nutritious. Oh, and 200C was too hot for my fan oven so I’d cook at 180C if I made it again. Made 3 small pizzas with a nice crunchy crust. When I’ve perfected the recipe I’ll add it to my blog.
Well, it’s 8.30am and breakfast, pins & needles, nausea, cramping, palpitations, muscle weakness and generally feeling shite calls!