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Hello all,

I am not sure what to write about today, or how much to say. I am bored of writing how I am, which symptoms are bad and so on, though I know it serves a purpose for me in terms of tracking my symptoms and health, which is one of the reasons I do blog. I am bored with it though, and so it seems is my partner, understandably. We want to escape the never-ending discussions of how I am, which parts hurt and so on. But how? I honestly do not think it is possible.

I do not need to tell you readers who are also ill and living with other people the difficulties of being in any relationship when there is an unwanted entity (the illness) hovering around affecting everything we do, or more usually cannot do. Things are ok, and we are coping but I am just feeling a bit emotional at the start of this year.

As well as wanting me and more especially my partner to have a break from it all, I am deeply worried about a friend of mine who is in hospital. I have heard from her dad that she has had an emergency operation and is very unwell, but nothing for a few days and I cannot help but think about her and her start to 2011. She has not even been able to open her Christmas presents yet. She is on my mind a lot.

I think I am also just in recovery from going away at Christmas. I feel a sense of achievement and adventure at having gone away – I spent a few days with my partner’s family. It was good and I am very glad I went in many ways. I was made to feel really welcome and they tried really hard to accommodate my needs and it was nice to feel part of something but it was also pretty hard for me at times.

The main issues were the travel (which took 4 hours on the way there and 3 on the way back; even as a passenger that is really a lot for my poor brain to cope with. I find it very challenging neurologically to be in motion and to have such a lot of visual stimuli rushing past at the same time); the heating, which despite other people saying they felt cold was on really high and it was the hottest house I have been in for a long time (which obviously is really bad for me in terms of POTS as it means my blood pools more easily and less gets to my brain which makes me feel worse and have lower stamina and more neurological symptoms, like tolerance of noise…); and also the noise!

When there is noise my stamina is very limited and the combination of Xmas music on a loop and/or a tv turned up loud for some of the family who can no longer hear very well (and refuse a hearing aid) as well as the conversation of up to twelve people on top was at times hard to bear. Added to this was the noise of a house full of people when I was trying to rest, especially when a few drinks had been had, despite my ear plugs! People really did try so I am not blaming them, it’s just that normal festive behaviour and this illness do not mix. It is not like everyone should sit and shiver in several jumpers in silence just so that I can “do” Xmas!! It would not be fun for me or anyone else that way.

Overall it was a successful visit and I would take on the journey again when things would be quieter and hope that perhaps I could be able to leave the house when there next time to explore the city a little. It did feel strange to just be in the house all the time and not be able to situate it or explore; which seems ridiculous as I rarely go out to explore my own city, but when you go somewhere new I suppose you feel it more keenly that it is the normal thing to do. I know there were art galleries within a ten minute radius, and that hurt!

I have been feeling a bit stir-crazy actually and the trip away almost added to it for the reason given above. It gave me a sense of adventure if anything! I have not left the house much for a long time, other than for appointments, and the weather has been a big part of this. It has been just freezing with snow and ice everywhere – hardly wheelchair-friendly. I did go over to see a friend before Xmas and that was really nice, though it felt so surreal and I realised it was nearly a year since I had visited her home. She has had to visit me most of the time in the last year. Another reason is that my partner is just so busy and there is no-one else to take me out. I really find it hard to go anywhere without my wheelchair and that means being accompanied. I need to perhaps just take a taxi sometimes and sit somewhere interesting and comfortable for a while, but finding somewhere comfortable (in terms of chair, but also noise etc) is quite tricky.

Good things already planned for this year are a lecture about printmaking at a local university at the end of March. It is just an hour so I am going to give that a try if I can. Also we have booked tickets to see Iron and Wine in concert, which is also not for a while, but something to look forward to. Some of the most memorable and best things I did in 2011 were going to concerts, which has become easier now that I can sit in my wheelchair, so I hope to keep finding good people to see this year. It is great to go out with my partner and share such experiences with her. We don’t do enough fun things together.

It is my birthday this month and some time has been kept clear to do “something”. It is not yet clear what I will be up to doing, or what the options are but I am looking into it!

I hope to continue with my art immersion at home (see blog post on my creative blog) and finish the painting I am working on and move on to the other many creative things I want to work on. So many ideas, so little energy and ability! Never mind, art is a good distraction from illness. I also want to read more. I have got a Kindle for Xmas, though I had it early, and I am really loving it and how much easier it is for me to read with than a real book.

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.

Some good news!

1. I am getting a wheelchair in two or three weeks after being assessed (it was not a gruelling assessment – just a nice woman who had a quick chat and then measured me up!). It is an NHS wheelchair, so it will be on long-term loan to me and they will pay for upkeep/repairs. It will be lightweight and have a headrest and a cushion! I am hoping it will be comfortable.

2. My application for a Blue Badge (disabled parking permit) has also been successful! I think this will be really useful and take the stress out of parking in many situations. It may open up some new options for places to go.

3. The itching has improved. It is still coming and going but is much better and almost as significant is that the night-time (drowsy) anti-histamines i am on seem to be really helping my sleep. The combined effect is that i seem to be sleeping better and my baseline for activity has been raised a little and i feel less manky in general. I have had some really bad days, but in each case it has been one day of payback which i can directly attribute to having done something; rather than just a bad day for no apparent reason. I am liking this new phase very much!

I have left the house a bit more than usual (at least once per week if only for a gentle/brief thing) whereas before i was not going out other than for essential appointments for weeks on end. A big change for me. Things seem a bit more possible and i feel i am recovering faster from doing things. I am still needing to have a sleep in the day, but i am finding it harder to get to sleep until a bit later in the day and am sleeping a little less. Before, I would often get up, have breakfast and check my emails etc. then have no choice but to just crawl back to bed. I feel more alive now. It is not a giant leap, but it is such a welcome break from the drudge of the past year really, which has seemed so retrograde overall, maybe this is the start of a better phase… Early days, it has only been two or three weeks! I know i am getting ahead of myself and am probably overstating the change, but it feels dramatic to me. Fingers crossed this “side effect” of the anti-histamines does not wear off… my mood was really struggling before – the itch was really driving me into depression as it was hard to cope with. I am feeling so relaxed now in comparison and my other pains are better too!

The best things have been going to a local art gallery and seeing the Hokusai print “Wave off Kanagawa” with a friend, and then, a week later, going to Cherryburn with my partner, where Thomas Bewick the local woodcut print-making legend was born. The afternoon at Cherryburn in particular I felt really good and my stamina was good. It was the best I have felt for many, many months. The sun was shining down on us and I felt so lucky to have made it out and to be enjoying a day trip with my partner. It was fun. We even stopped off in a pub for a cuppa on the way home (yes, that is two separate locations in one trip out!).

3. I have some lovely visitors coming to see me over the next few months, some end of May, some Mid-June and then another in August and we are going on holiday with her to a cottage up the coast from here – I am counting the days til my summer holiday! I did not think I would be able to go anywhere this year as I have been finding travel impossible, and also the itching has really limited my ability to sleep anywhere but my own bed (if i am lucky) and i cannot go anywhere without a bath, as showers are also a big no-no. I am still a little concerned about it as my skin is so sensitive to “lumpy” mattresses (and a million other things), and painful even if not always so itchy, but things are much better than they have been and now i think i will survive. We will be close to home anyway if things go wrong, but far away enough to feel like it’s a holiday!

4. I continue to be able to read and have just read The Colour Purple, by Alice Walker. It has sat on my shelves for over a decade and i am so glad i decided to read it at last! So well written, interesting, moving and grounding. I loved it. I have also bought two books in a second-hand shop (it was so great to be able to go in and browse them last week on a quick trip out!). Lolita, by Vladimir Nabokov who several people tell me is worth reading but i have not read anything by him before, and The Lovely Bones by Alice Sebold. I don’t know which to start with!

5. Just remembered another good thing! I am doing more drawing. I have been inspired by Michael Nobbs and his “75 ways to draw more”. The results are a bit mixed but at least i am doing something rather than waiting til i feel good enough to do something i think i actually “good”. A few minutes here of there can produce something, and something is better than nothing! I am being brave and posting them onto Flickr, as there is a “75 ways…” group there. I have had some nice comments from people who are evidently much better at drawing than me, which is generous of them!

So in summary, life doesn’t feel so bad at the moment, long may it last.

Just a quick post to share my joy at recently purchasing a book holder to help me to read in bed. I will not put the brand name here as i try to avoid product placement, but it is like a beanbag that the book sits in. It is lightweight and quite adjustable in terms of the angle etc (though perhaps not so much as promised). I am very happy with it.

The only position i can read a book in is to be lying flat on my back, this is because my neck is so temperamental that if i put any strain on it, or hold it at the wrong angle too long i get lots of pain and it can trigger nasty headaches that last for days. My weak upper back and shoulders as well as my neck are nicely supported if i am lying down, the only issue was that i had to hold the book up on my elbows which caused muscular pain on the front of my upper arms, as well as in my wrists and hands. My little finger in particular used to go quite numb from holding the book open – some books really don’t like being open and resist with some force!

With my new book holder i do need to prop my head up slightly higher but this has been fine. The bean bag thing sits on my body and my arms can relax between page turns. (There is a plastic bit to hold the pages open). They still ache but i think that will fade or at least it will be from doing other tasks!

I am really enjoying reading at the moment, and am finding it easier than i have in the past, despite my general health levels being fairly static. I really find it helps me to get to sleep and switch off thoughts from the day, or anxieties about the next day, by taking me into a fictional world. I am currently reading two books by Tove Jansson, whose writing i absolutely love. I am considering The Blind Assassin by Margaret Atwood soon, as i have been wanting to read it but we have the hardback copy – not a problem any more!

(have just corrected my incorrect spelling of Jansson, apologies!)

ME/CFS Awareness

ME/CFS Awareness

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