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I had a really great appointment with my GP last week. I have only been seeing her for a short while so we are still getting to know each other, and it was great to feel that my hunch that she is really great seems to be ringing true.

She spent a long time with me, and she does not rush me when I am trying to explain things which really helps me to concentrate and not forget important things, as well as it being less exhausting. She really listens and her response to things I suggest is usually positive, such as “yes, that is certainly something we can try” or “I will speak to a colleague/look that up and get back to you”. It really is a breath of fresh air after my last GP surgery.

This time was really a drug review and a review of symptoms to find what combinations might work best. I have come away with plans to make several changes in my own time, one at a time and to experiment with what works best for me. She really treats me like and intelligent adult and is not patronising at all. It is so great.

(Has anyone tried Clonazepam and do you take it in the day for muscle tension/pain or sensory overload/neurological symptoms? I have started taking it at night and sleep better but my symptoms remain…)

I also asked her about stretching and gentle exercise to maintain what function I have over the long-term. This was also related to the risk of osteoporosis of being indoors so much and not being physically active. She said that any movement is better than none, however small. I have been told before that stretching is pointless unless you can hold it for 20 seconds, and that doing exercises is also pointless unless you keep increasing the amount you do (like graded exercise therapy). My GP says she will ask a physio friend of hers about the best way to stretch very weak and trembly muscles, and how to build strength gently. She said I won’t be able to tell any difference for a long time as things will be so slow, which is a good attitude I think, rather than the pressured approach of people I have met before. I am willing to give it a try. I told her that I have a heart rate monitor and would wear it to be sure I was not stressing my body too much, and in order to keep my heart rate low I will have to do most of it lying down. She said that was excellent. I have dug out the exercise sheets given to me in the past by physios and the CFS management team, which I failed to do regularly before as the approach was not tailored to my severity. I just need to work out what I can actually do and also which things it is most important to focus my energy on, as I won’t be able to do anything on days where I am in recovery from doing something, or having a flare up: I need to choose wisely which stretches/movements will have most all-round benefit. She did say that even stretching would probably cause increased pain initially but not to worry about it if being very gentle. I hope that longer term I can reduce my pain levels through being a bit stronger and my muscles being less tense. I do think that there are various causes for muscle problems in ME and that it is just not possible to exercise all the issues away, especially nerve related issues. I can only see how my body reacts. I don’t think anyone should try to exercise unless they feel up to it, and I certainly will only be doing a little bit during my best time of day and on better days… I use the word “exercise” very loosely!

It’s worth a try, even though there are other things I would rather be doing with my time and energy! I will be starting with just a few minutes so will just have to discipline myself… again. Maybe some stretching then a treat!

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.

ME/CFS Awareness

ME/CFS Awareness


September 2011
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