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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.

I had a fantastic afternoon out with my partner and the dog – we all love the beach – and for once I got to walk around on it WITH THEM!

Usually I walk a short distance from the car to the dunes, sit there while they walk along and then they come back for me. Occasionally I will walk directly to the water’s edge and back if the tide is not too far out to get close to the waves…

This time my partner suggested that she drive us to a different place that she discovered recently, about twice the usual drive. So I lay in bed all morning and waited to see if it felt possible. At 2pm I got up and felt I could give it a go. I have not been good in cars and have only once in the last year (again, quite recently) been in the car for more than 20 minutes each way, but this time it was 40 minutes and (on the way there at least) I felt so relaxed and untroubled by the usual neurological issues that make it so stressful that I almost forgot I was in the car at all! The way home was slightly worse, but still bearable despite going at 70mph or over which usually does my head in and makes me feel awful.

So, a good start. Add to that the beautiful warm day, a light breeze and a slight haze that took the burn out of the sun but left it pleasantly warm even on the coast which was quiet and still. Add to that beautiful rock pools to explore and a marked lack of POTS symptoms. Add to that my new spectacles which we picked up on the way which made me feel a little more unsteady due to the slight prescription change, but feeling stylish all the same. Add to that the pub overlooking the beach for refreshment and conveniences at the end, watching swallows fly right in front of us with forked tails and brown bellies flashing.

I honestly feel like I have been on holiday for a week, not for just a few hours. Holiday from illness and from the norm. Spending such nice time together as a “family” (inverted commas there not for Section 28 style pretend family; but for “family” of two women and their dog!). Holiday from the mundane and predictable. Holiday that brings hope of some change in the air. A realisation that try as I might to make the best of my limited life and value what it gives me; I have not felt that ALIVE for some time.

I am enjoying this recent trend of being able to get out of the house more. It feels so alien to me and so surprising; yet at the same time I can feel that I am getting used to it already, which is worrying. I am trying to take each opportunity as it comes and to enjoy this time. For now it is so joyful to be able to do some new things. The future is unknown (for us all!).

I had doubted myself sometimes over the last year in particular when life was so hard with little let-up. I thought: “Am I really worse than a year or two ago that I can barely go out at all, or am I not going out of fear or anxiety?”. I find it so hard to judge whether I am “better” or “worse” as main symptoms change and evolve which I partly why I write this blog: to help me look back, to remind me of what was possible at different times etc. I can now see that as soon as I truly feel able I jump at any chance I get. I should not doubt myself. It is hard to judge when to try something and when to rest, but I have been doing it for a long time now, and usually I DO know what is best even if I cannot explain the subtle difference in sensations in my body to anyone else. I do know that now I need to rest, happy that it is because I had a great time out and about.

Last week my partner went away for the week to work elsewhere. The week started well and i was pleased that i felt able to look after myself (bearing in mind i had been left with meals already prepared for those first few days). I managed to do some creative things one day and it felt good. My Mum was due to come visit to look after me after a few days so i made sure to pace myself and not do too much. It was hard as i felt pretty good when not doing much. It is hard to hold back when you feel a bit better than usual! In the end i did not feel as good by the time she arrived despite being so careful, which was a disappointment but also perhaps good as she was not feeling well either. We went for my hospital appointment to see the POTS/ME specialist and then rested all weekend until Monday, when my partner was home and we all went out together for the Bank Holiday Monday!

The trip to the hospital was a struggle and i was exhausted from the sustained stimulation of navigation, bright lights, noise, talking, remembering what to say at my appointment, waiting for medications (which we out of stock after half an hour waiting!) etc etc. It seemed like we were out for hours but we were home by half past eleven in the morning. Still, it was quite a trip.

The good thing is that the specialist gave me a new drug to try for my POTS symptoms. It is to slow my heart rate. Also she took my increased pain seriously and in six weeks i need to go back (to assess how this new drug is suiting me) and she will start me on another drug, all being well, which will help with pain and also, hopefully, with my itching. That one is Gabapentin (I think, after i got home i doubted i had remembered right what she said – must get her to write things down next time, as i always have this issue) which I also read can help with deep-stage sleep; that would also be welcome!

On the bank holiday we went out to a local stately home type of property  – there were various art installations (interesting!) and lovely gardens. The sun was out and i took some photos (yet to be developed). I was pushed in a wheelchair all around and it was pretty accessible even if it took two people to push me up the steeper parts! It was a nice day, but i really can’t wait to get my own wheelchair with head-rest: my neck was really painful and did put a damper on things as the visit went on, despite taking painkillers. I was glad we managed to something fun while mum was here, as i had hoped to be able to do more as i have been feeling so much better – i think that “so much better” is put into perspective when i actually try to do things though!

ME/CFS Awareness

ME/CFS Awareness


June 2010
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