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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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Well, for the first time in a VERY long time i had a proper night out! I have been out for a meal once in the evening in the last year with a friend, but it was a very early meal. I have been out for some afternoons but am usually home by 6pm. The last time i can remember being out late is my sister’s wedding: May last year. So this was a big deal!

My partner goes out to concerts sometimes and when buying tickets always asks me if i think i could come. I always say no, as previous attempts have resulted in trauma at the event, or more usually a wasted and expensive ticket. This time i thought maybe it was possible as i was feeling a bit better at the time of booking. Also with the new wheelchair i would hopefully be more comfortable/supported and have less pain during and afterwards. The venue is nice, familiar, small and accessible. Plus we got one ticket free as a disabled person plus carer so there was less pressure. All good.

The day before yesterday i felt really awful, very dizzy and light-headed with the weakness that accompanies that POTS state. I was in bed most of the day. Yesterday i woke up feeling better but still spent the morning in bed and did as little as possible until getting ready to go out. I felt ok and it was so nice that my body was co-operating.

The concert was really good. I did not find the noise too loud as the acoustics are great at the concert hall, it is a clean sound. The last concert i went to was in an arena and it was so loud and bad quality that i was actually reduced to tears – it was so painful and i could not believe all the other people there looked fine and like they were not noticing anything wrong! I did manage to stay (just) but i found it very uncomfortable. I knew this time would not be the same but i took ear plugs anyway! I was so pleased to be in the wheelchair as the chairs there would have been no good for me at all. So glad i have it at last.

We had a good view and when Eliza Carthy came on stage i literally started crying (for a good reason this time!). I was suddenly overwhelmed to have made it out, to be there at all. All the good memories/feelings associated with her and the times i have seen her perform in the past came over me in a flood and i just wanted to give her a hug to celebrate seeing her again (of course i did not, if only because the stage looked too high to scale!). After a little cry i felt more able to relax and enjoy the concert without all those feelings getting in the way; more like a normal person would enjoy it, rather than a fun-starved ill person! The lyrics at the start when i was crying were something like: “thank you lord for letting me live another year” and i felt my own gratitude for being able to go to a concert again.

The concert was called “Murder, Misery and then Goodnight”, after a Kristin Hersh album. She was there, as well as Handsome Family, Tim Eriksen, Eliza Carthy and Howe Gelb. It was ” an evening of the darkest twisted murder ballads” which sounds miserable, but they actually sometimes had a darkly comic edge to them, and there were lots of laughs. It was part of an Americana festival and the tone was a mixture of folk and blues/gospel – i don’t know how to describe it; a bit like Oh Brother Where Art Thou soundtrack! There were some great songs where we all sung the chorus and in that small venue it worked really well. A man played a saw, as well as some other odd percussion things and it worked really well with the sinister lyrics. I was amazed!

Tim Eriksen started the concert standing at the front of the stage in a cloud of smoke holding just a tiny battered book and just sang in that real southern style, completely unaccompanied and it felt like being at the theatre! I knew then it was going to be a great night. What a powerful start. He looks like a really interesting artist too, i had not heard of him before but his biography is very interesting and varied and he worked on the music for Cold Mountain and helped teach the actors to sing for it, apparently! You can hear a bit of him here.

Eliza Carthy was just amazing. My partner says that they all lead on a similar number of songs, but it seemed like she had a much bigger input. I think this is because she was able to join in with other’s songs, either to sing or play the fiddle as back up to the lead artist. Sometimes it was clear that this had not been practiced and she just joined in, tentatively at first to get a feel for the chords and song then just went for it – amazing to watch. There was a spirit of just joining in on each other’s songs, having a jam, but some looked more confident to do that than others.  Her own songs often started with just her voice, singing to a light foot tap and it was spine-tingling, then the song would gradually build to full instrumentation. I rarely listen to her music at home (I only listen to a very few select artists actually as i often find it hard to listen to music, and can rarely multi-task – i.e. listening to music is an activity in itself, not a background thing which limits when it can be done) but i am a huge fan. Her talent and what she has done to shake the dust off folk music is admirable. If she is playing near you,  and you are able ,go see for yourself! Even if you are not usually a folk music fan, you will not regret it. Quality like her do not come along often.

I felt the concert was really long, in a good way, I felt that the effort of going was worth it as they gave us so much, so many songs and a great performance. It filled me up with good experiences/feeling that i can draw on for a while. It also gave me some confidence that I might be ok to do the odd different thing while on holiday (coming up in a few weeks) as i have been worried that i will just feel so awful the whole week it will just be a change of walls rather than much in the way of new experiences. We shall see. Anyway, i am so happy and grateful that i went out last night, whatever comes next.

ME/CFS Awareness

ME/CFS Awareness

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