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I have had a pretty good summer! As I said in my last post, I had a great visit from a friend. I then had another friend come for a week and although I felt quite awful at times and had lots of sensitivity to noise, light and sensory overload as well as other things, she is the kind of friend who made the experience more pleasant. She just kept me company and we still had fun. It is hard to be around people when symptoms are severe so I was so grateful to have someone so chilled out and who knows me so well to be here with me. After that I had a few days to gather my self, my strength and my essential belongings before heading up to Scotland for a week. I was really surprised that although the travel was hard (and I slept literally the whole day after we got there) I managed to go out briefly three times during our stay and really enjoyed the things we did and saw. After that we again had a few days break before my partner went away with work, and my mum came up to help me cope with my daily needs and keep me company. We had a good time, and it felt quite busy despite only going out to a doctor’s appointment one day and a quick trip to see the sea and sit in a cafe another day. That was last week and this week we have the builders in – they may still be here next week actually. So it has been really busy!
I was a bit daunted by this summer before it happened. I worried about how I would feel, whether I would be able to enjoy things or if I would feel too bad to make the most of things that were happening and feel I was missing out. I have been pleasantly surprised by what I have done and how I have recovered quite quickly from each thing. I have been very careful, of course, but think my post-exertional malaise is not as severe as it used to be, particularly looking back to last year. I do get a flare up of symptoms, more pain and neurological symptoms rather than fatigue, per se. The sleeping all day the day after travelling was really unusual for these days, though so was such a long journey. It took three hours.
So here I am back at home and contemplating what I want to focus on over the next few months. Some things have come out of the GP appointment which will take some time and focus. I will talk about them in another post. It has been interesting to be without a computer, or accessing it less over the last couple of months. I really want to keep my blog going and interact with my online friends, but I also want to be online less and do more creative things. I did not really miss the extra internet hours and think I need to set some boundaries for myself so that I am only online at certain times of day and for short periods. I doubt I will miss out on much and it will focus my attention to the important stuff.
I really want to actually DO more creative stuff rather than just think about it and I need to make some space. The health stuff is going to take some time each day, so I need to make a plan! I would love to go with the flow more, as I expect I have expressed in previous posts, but with such limited functional time each day it is really hard to do that. I also find it really hard to remember what I need to do, so unless I have a plan I use my energy on non-essentials and forget the important stuff. Not good and does not give any sense of achievement. I have a new creative project with a friend so I need to make time and space for that. I am quite excited about it!
I subscribe to Sustainably Creative, by Michael Nobbs who is an artist living with ME. He is trying to earn a living through creative means in a way that fits around his energy issues. He has helped me to think about how I can fit in more creativity and work out what is important for me to focus on. He sends out regular digital postcards, an illustrated newsletter and daily podcasts which I really enjoy. This month new members get a free copy of his latest book! (He has produced others too). Whilst I do very little and could not contemplate trying to earn money from creativity right now, it is really good for me to do little bits and bobs and feel some sense of identity as an artist, not just as an ill person. While the latter wins out most days, the creativity and ideas are always there bubbling beneath the surface, even if I am not doing anything about them. It is good to see how others are trying to navigate these issues.
So, while I am back to the old routines in many ways, I hope to shake up a few and make some small changes, hopefully for the better.
I see on reading my last post that well over a month has passed. I had a great time with my sister and hope she will come again soon as possible!
Since then I have had a nasty cold virus which knocked me back a bit. Very frustrating as although I am now recovered it took much longer than a cold should and I have not had the stamina I had previously. I still don’t actually. So much for the stability I was talking about in my last post! Things are stable, but only because I am doing very little most days.
I have been out in my wheelchair for a few walks, and that has been lovely. I hope to do that regularly now that the weather is warming up as even half an hour out of the house can really be beneficial. I like it when I see unexpected things. The first one I met two horses, one was very interested in my wheelchair and it only just missed being covered in horse drool (I had stood up to say hello to them, and was glad I did as horses are a bit intimidating close up, especially when curious!). The second time I saw a frog popping up to the surface of the water at the pond, presumably to breathe, then disappearing back into the murk. It did that several times. Then the last walk it was sunset (I got very cold!) and I saw fish noses or fins then a ring rippling out from where they surfaced to feed. There were lots of them, making circles all over the place. The water was very still so the ripples lasted for ages. It was very peaceful.
I have also been having some massages and they have been great. After the virus I just ached all over, right in between my ribs, front and back, from coughing and like I had strained myself from the neck down really. Also due to my blocked nose I was better sleeping on my back as it seemed to stay clearer but that made my lower back pain flare up quite badly. I cannot have massage on my legs due to my neuropathic pain and general tenderness, but have really felt the benefit on my upper body. It has taken about three sessions to feel better though, to convince my muscles to give in to it. Obviously I will always have pretty much constant muscle pain and tension but I think it does help to ease it off every now and again. I have not had acupuncture for a long time but I will go back in May and stop the massage again soon (maybe just one more?!). I am not supposed to be having them as my acupuncturist said he did not think deep massage was good for me – shhh! Well I am sure it’s only moderate massage (not deep) so it’s FINE! Also it feels so good, so tough bananas…
In my previous post I also talked about wanting to use my energy for more creative things, having put so much into my benefits application so far this year and having had little energy left for fun or creativity. Due to the virus I have not done a lot, but I have been making some postcards for my friend, and that has been fun though each time I do one it creates much neck and upper back pain for a couple of days – I need to find a way to sit that is better but there seems no magic answer. I need to try some office chairs in a shop and find one that is supportive in all the right places, but have yet to make that trip out. I think that drawing (and other creative activity) by nature is hard to manage as when you concentrate on something like that you cannot help but tense some of your muscles as you draw. When those muscles have the stamina of a gnat, that causes pain very quickly! I have been enjoying the challenge of the postcards though and the sharing of it with a friend (she sends me a card she has done and I respond in kind).
The other thing I am classifying as creative activity is gardening. The weather has been lovely and I have been getting that spring feeling and my partner has been helping me by weeding, chopping things back and preparing pots for me. I have sown some flower seeds for the garden and also some herbs indoors. My cold frame is up and things are coming along nicely. I hope we will tackle some veg seeds next weekend – carrots, beetroot and spring onions!
I have also started taking some digestive enzymes over the last couple of weeks. I will blog about that separately…
Yesterday we went out to The National Glass Centre. I have been really struggling mood-wise (and physically as usual) since Xmas/New Year. Mostly I think I have just been in recovery from the festive period but I have been surprised by my little depressive bout, as I have been fairly stable lately on that score.
Anyway, I have been resting up and struggling on in equal measure and just feeling more and more trapped in the house so I decided the time had come to prioritise mental health over physical (a.k.a “to hell with the consequences!”) and do something fun. My partner reminded me that apart from going away over Xmas (involving travelling by car, being in a different house for a few days, then coming home – so not really giving the feeling of getting out and about, strangely) I had not been anywhere except the odd health related appointment since November when we went into town. That explained a lot.
It was great, a bit of detail can be found here.
I feel so much better today (granted physical payback has not really hit yet). I am buzzing with enthusiasm for creative things, and feel much happier. Just managing to go gives me a renewed sense that fun things are possible every now and again, and need not be stressful if they are the right size of outing in the first place.
I am hoping that the flurry of snow that fell this afternoon does not mean we are going to have a repeat of December’s weather, as I would like to leave the house again sooner rather than later!
I have started something… check out the last two posts on my creative blog for the details… (birders welcome)!
I have started a new blog which is focussed on my creative activites… It is called Energy Sparks: Check it out!