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Well it’s been a rollercoaster of a week, but I have emerged fairly unscathed. I have surprised myself actually!

On Sunday, we went out to a concert (yes, again! Second of the year – get me! I know!). It was Frazey Ford and her band. The venue was wheelchair accessible, although it was not that easy as space was tight to get around as it was an old building. The good thing was how small the venue was in terms of audience, it was nice and cozy. I was really unsure if I would make it and the run-up was not good. I did make it, though I was in quite a lot of pain during the concert despite the painkillers and was constantly writhing about. I am sure the percussive sounds my joints were making added something to the music. I really enjoyed it and I actually love her album “Obadiah” even more than I already did as I heard lyrics I had not previously noticed (she does not always sing so clearly, not a criticism, just a fact) and also I am remembering her singing it in person now when I listen to the CD. Her voice is just amazing and we were front row (wheelchair is good for that).

 I am left in particular with some lyrics from Gospel Song going through my mind, which I find very calming and take me out of my body quite nicely: “Oh, beautiful clouds, I’ve been sailing through. Oh golden clouds, I’ve been sailing through you.” Check it out for yourself!

On a musical note, I just got Antony and the Johnsons new album “Swanlights” and I love that too though I have not listened to it many times yet. I am enjoying music more these days, though I can only tolerate certain things. It is so good, as for a while I really could not bear music at all due to my neurological problems. I am even listening to it really quietly now as I type. This is a big deal for me as I find it hard to think straight when there is music on, or tv, or any noise. It is nice to challenge myself occasionally!

Another good thing that has happened this week is that despite the difficult appointment on Monday (the day after the concert) and the fairly drastic emotional response I had to it (plus the usual payback from doing two things in a row) I managed to go for a walk with my partner in the woods along the road from our house on Wednesday. I was in the wheelchair and it felt good and did not make me feel any worse. In fact it was a great stress-buster and we were both smiling despite the greyness of the day. Well, my partner says she was smiling, but I cannot see her when we are walking. I took a few pictures along the way. They are taken with my phone, so not brilliant pictures and it was a cloudy day but I just wanted to remember it and maybe you will enjoy getting a flavour of it.

This one is of me with the apples we scrumped!

Another good thing, somehow among all the stuff I have been doing, my more erratic than usual sleep pattern and feeling quite bad at times I have managed to read How To Be Sick by Toni Bernhard. I have really enjoyed it. It is the first book I have read on my Kindle, which I think made it easier. I might write a bit more of a review soon.

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Yeah! At last i went out in the snow! My partner shovelled the snow away so we could get the car out and drove me up the road to the woods. The snow was crunchy and quite deep but not too hard to walk in, the sun was out and I felt well enough to wander about for quite a while. I sat on a bench a while and the snow beneath me did not even melt! It was pretty cold but the sun made it feel not too bracing. It was such a relief to get out of the house and to be able to seize the moment when there was sun and fresh snow. It was breathtakingly beautiful.

I took some photos on my phone, some of which i will post here. I took others on film so i have not got them yet.








And here I am in action with my holga! I did not take this one, evidently. Oh, it was such therapy!

(I don’t care how bad i feel as a consequence, it was worth it.)

ME/CFS Awareness

ME/CFS Awareness

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