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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…
Well, it is the end of February. One sixth of the year has disappeared and it has happened pretty fast. I do know where it has gone, I have been working on my Disability Living Allowance form for most of this time, when I have been up to it.
This form has taken over my life, along with appointments with all the medical professionals involved in my care to ask them to write supportive evidence for me in support of my application and also to talk to them about what is needed (as usually knowing about my medical conditions does not mean a doctor knows about how it affects me personally, which is what the benefits people need to know).
Last time I got help from a charity as it was the first time I had applied and had little idea what was required. This did help a lot in terms of energy for filling in the form, though not the outcome. This time I have largely filled it out myself, which with my physical and mental stamina has meant it has taken me a very long time. My partner has helped me type some parts and has physically written up the form, as well as checking what I have written and suggesting things I have forgotten, and that help has been really helpful but she is so busy that I could not ask for more and frankly, I am the one who knows the most about it and how it needs to be done. She could have gained that knowledge but it just seemed above and beyond to ask her to do that on top of everything else she has on her plate.
I know that my facebook friends and others are probably sick of hearing me talk about it as I have vented a little during the process and all will be relieved to hear that it will be sent off this week! Hurray! I cannot wait to see the back of it though I know that next time I hear anything it will be a request for a medical, which last time I found VERY traumatic and lead to the denial of my claim and I had to go to appeal. The whole process took a year. It was successful in the end, but I am really not looking forward to that all over again. It really takes over your life and energies and it was a hard year for me. I have filled this form in so thoroughly and carefully in the hope that it will go through and I can avoid that year of hell this time. I am crossing everything but I know that just about everyone with ME goes to appeal. Even my CFS specialist said so, so I should not get my hopes up. I know that so many people are going through benefits processes and appeals at the moment, the whole UK system is in a mess and people are being treated so unfairly. It is really inhumane.
Anyway, two months of my available energies have been used up already and I really want to use what I have now for better and more creative things. I have several new arty books from Xmas that I want to look at for inspiration as well as projects I have been planning for months (actually years) that I want to get on with. I also have a lot of fiction/non-art books that I want to read – I love having a pile of books waiting but at the moment it seems a little too high and I keep dipping into new ones before finishing the ones I am on! I need to focus on the ones in hand and ignore the temptations of the bookshelf or I will not fully enjoy each one as I go as I will have half an eye on the next one – no way to be!
One of the best things to happen so far this year was a couple of weeks ago I went to see The Imagined Village. I have seen them before and knew it would be good, but it exceeded my expectations (except it seemed to be over far too quickly) and it was a night to remember! I always love to see Eliza Carthy live, and they are all such talented and enthusiastic performers that it is a real joy to see people doing what they evidently love. There are more concerts planned by them and other related artists to raise money for Norma Waterson (Carthy) and family who is Eliza Carthy’s Mum and who is very ill in hospital. Details here.
Other news, my sister is coming to visit me this week! I have not seen her for nearly two years and I am looking forward to some fun! Also my garden is coming back to life after all that snow in December and I am feeling a little hint of spring in the air… I hope to be able to get outside a bit more soon.
Also interesting to note that though I don’t feel dramatically better, I feel that my condition is more stable in terms of energy at the moment. I do not seem to have much variation even after I have been to an appointment (or been to a concert!). I do still get post-exertional malaise, but it is not as severe as in the past (relative to my overall function levels) and I am finding I am getting more pain instead, if anything. This change is actually welcome. (I think one of the worst things whatever level of function is the unpredictable and ever-changing nature of this illness and not knowing what is ok to do and what the day will bring). I do rest more before and after an event and I am careful in what I choose to do and cannot go out often, but I feel it is not such a big risk to go out occasionally. I don’t mind taking more painkillers occasionally for a good reason. I think my wheelchair is helping me not have such a dramatic reaction to being out, and also perhaps my Alpha Stim and Acupuncture are helping me. I am sleeping better in general and I think this has a lot to do with it. My nerve pains are also more under control with the Gabapentin dose I am on and this of course helps a lot. Anyway, it is nice to have some calm and I hope it continues like this a while, especially if it means I can do some nice things at home and pop out a bit more. I could do with some fun, and I am sure I am not the only one!
Please support a new project “Art 4 XMRV” by buying Greeting Cards, Matted Prints, Laminated Prints, Mounted Prints, Canvas Prints, Framed Prints and Posters. The images are donated by artists who have been affected by ME/CFS.
Art 4 XMRV is a collaboration between artists who have all been impacted, directly or indirectly, by Chronic Fatigue Syndrome also known as Myalgic Encephalomyelitis (CFS/ME). Leading healthcare professionals have stated that symptoms can often be more severe than late stage AIDS, Multiple Sclerosis and Cancer. This illness is a great deal more than ‘feeling tired’.
In October 2009, the Whittemore Peterson Institute in Reno discovered, thanks to their groundbreaking research, that up to 90% of all people with CFS/ME and up to 7% of the healthy population were infected with a recently identified retrovirus called XMRV. XMRV has also been linked to Autism and Prostate Cancer.
Once a retrovirus infects a person it becomes part of that person’s DNA and stays with them permanently. HIV is the most widely-known example of a retrovirus. It is estimated that over 17 million people worldwide currently suffer from CFS/ME and they are all looking to the Whittemore Peterson Institute for answers. The sad truth is that the WPI are not being supported by Government finance. Public funding is therefore desperately needed for further research and clinical trials.
Art 4 XMRV is an attempt to help raise money for the cause. 100% of all money earned through sales will be donated to the Whittemore Peterson Institute.
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 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.
I was planning on writing a thorough review of the book How To Be Sick by Toni Bernhard, but I am taking advice and guidance from Michael Nobbs in his new ebook Sustainable Creativity and I am keeping my tasks simple and manageable. If I write a short review I can get it done today and have a sense of achievement, rather than not finding the energy for days/weeks and having the task hanging over me. He also encourages us to not care if something is not perfect, allowing us to get on with our day. This review will not be well honed but I hope it will be good enough. I am not even going upstairs to find the book to refresh my memory before I start!
In How To Be Sick, Toni combines the experiences and challenges that chronically ill people face day-to-day with Buddhist teachings in a very effective and seemingly effortless way. It does not feel like the chronic life is being forced to fit into a paradigm, it is as if these two things were meant to be thought about together.
I found that I did resist buying this book, despite the good reviews. As someone with very longstanding ME/CFS I have become wary of self-help advice. Often it is forced onto us, inappropriate, claiming to cure, patronising, making assumptions about us and so on. Or we seek it out ourselves and get “self-help fatigue” on top of the illness itself as we work so hard to challenge ourselves, examine ourselves and change ourselves and just end up twisted in knots feeling no better, calmer, stronger or healthier. We then feel a failure and I for one no longer take part in these activities. I suspect I am not alone. Who, when chronically ill, has the energy to keep constantly looking at themselves in such an intense manner?
So against this backdrop, Toni has bravely approached the problem in a new way. It really does feel so refreshing and when I actually picked up the book and started reading I felt no resistance. It is written in an easy to understand, absorbing, humourous way (I laughed out loud at a bit about Sarah Palin!). Most importantly she takes us on her personal journey and explains how difficult she still finds some of the practices, rather than saying she has reached some level of perfection (enlightenment!) and therefore effortlessly copes with all day-to-day stresses and restrictions on her freedom. Of course she doesn’t, she is only human, and that approach allows us all to have a go, Buddhist or not.
It is really refreshing to read the examples she gives as I had also found myself in these exact same situations. Perhaps it is because Toni has ME/CFS and POTS as I do, that our experiences are so similar, but I expect that actually the experiences of chronically ill people are more universal, regardless of our specific conditions, than we realise. Which begs the question: Why is our experience so marginalised and misunderstood, even by people whose job it is so see us regularly, ie medical professionals? (See previous posts for where this issue is coming from for me!)
I have occasionally done Mindfulness of Breathing meditations over the years, in phases. I first started before I became ill when a monk came onto campus once a week when I was at university to do a guided meditation. I found very powerful and energising at the time. While it is harder to do in a body which is constantly uncomfortable and without your own monk to guide you (!), I have found that being guided by a recording is also good. The book made me see this practice in a new way and I feel encouraged to keep doing it and getting more and more from it.
Lastly I would like to say that even if you know nothing about Buddhism, this book is very accessible. It has sparked an interest in me to look at it further, especially the specific concepts that Toni works with in the book. (Michael Nobbs actually posted a link on his website to Audio Dharma and a talk about Embracing Imperfection, which echoed some ideas from Toni’s book. I just went to find the link to post here and see that Toni has done her own recording on the site! Small world.)
What really felt encouraging for me was that although I had not heard of many of the Buddhist ideas in the book, I found that I could relate to the practices. I realised I have been doing some of them by myself. For example, I do enjoy the joy of others more than I perhaps did at the start of my illness, even when I cannot participate in the source of that joy (although there are some people with which this is easier to do, than with others who make no acknowledgement of your own situation! I still have work to be done.). It is nice to feel that you have made some progress yourself inadvertently just by living with illness so long.
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.
feel the need to empty my thoughts, and thought here would be as good a place as any.
Woke up in lots of pain again today. my back hurts all the way from top to bottom, spreading out from the spine, under my shoulder blades, around my waist, over my shoulders, up into my skull. this pain seems worse recently, though it is always present to some degree. It is also more in my arms and legs than usual, the heavy aching that feels like my muscles are clenched and i should stretch, but i don’t know if that will aggravate it and finding the right positions is hard when standing makes me so dizzy.
I have has some benefit from the Gabapentin, itch-wise if not straightforward pain-wise, a few days with just a few odd sensations but nothing that developed, plus bad for a while after a bath. A big improvement. Then the last two days i have had quite long-lasting attacks in the mornings, and a bit more discomfort at night, though not too bad. I just hope it is not creeping back in. I tried not to get my hopes up, but it feels like a blow. Now i wonder how reducing the anti-histamines will go – are they doing anything or not? I don’t want to have to endure more itching to find out.
Starting to worry about our holiday. Less than 3 weeks to go and i wanted to be feeling better than this. Obviously. Had hoped to get out and about more this summer but it feels like it is slipping away while i battle these pesky but surprisingly incapacitating symptoms on top of the usual fatigue etc. I do now have a wheelchair which is comfortable, and have been out for a little trial run around the local streets and my partner is happy with how it feels to push. I hope we can get out to use it as it took three days to feel able to do that 15 minute “walk”.
I know that i will enjoy my holiday and will have fun during my better moments. My friend is coming to join us for part of it and i only see her once a year and i can’t wait to see her (though she will need re-training now that hugs are so painful if done in the usual way!). It will be good just to hang out, but i suppose i cannot help but want to do a little bit more. I have seen some boat trips that go to a nearby island, for example. I would really like to do that. They say there is a disabled-friendly path on the island, so maybe my wheelchair will go on a boat! Maybe i am being unrealistic. The thought of getting on a boat right now is not apealing, but perhaps my body will comply when the time comes? Sometimes these things come off… but will the rest of the holiday be worse if i do a big thing like that? Can i just have a week where i don’t have to face these conundrums? no? i thought not.
One thing i am really looking forward to is sitting somewhere and doing some drawing outside with my friend. She has agreed to come with me. it will be fun to sketch with a friend. I am pretty sure i can manage that.
Just a quick and fun blog post (to distract me from other posts i could write which are less fun, say about ITCHING!Arghhh!).
I discovered the other week that if you type “ME symptoms” into Google Images, my Symptoms Picture from ME Awareness Day last year is the top hit! I just did it again and it is still in the prime location. Also the two other images i created for the occasion are on the first page of results. I wonder how long they have held that position?
This really cheered me up when I saw it. I know it is silly on the one hand, but on the other hand it does suggest that many people are seeing them. Some of them may not have ME/CFS and may be learning more about it, which was the point of putting so much work into the images in the first place. It was hard work and it is nice to see it has possibly been worth it.
I have been wondering what to do next year as I was concerned that recent efforts were not having much effect. Maybe they are having more effect than i thought! It is the International Top Hit!!
Also, don’t companies pay lots of money/make lots of effort to get the top slot on Google and other search engines? Granted the other images there are a bit rubbish so my competition was weak, but ha ha anyway.