Sunday 10 August 2014

ME/CFS charity donations

Last New Year I set myself the target of trying to raise some money towards one of the very worthy ME charities.  I didn't manage it last year, but I am happy to say that today I have sent £274 to Invest in ME's Rituximab trial research project and $452 to Dr Ian Lipkins Microbiome research project.
This money came from  a Charity Curry Night which raised £548 and it feels really good to be able to send this money off to these really important pieces of research.  I hope to be able to do more later in the year.   The Rituximab trial has now reached it's initial target for the early stages of the project to begin.  Dr Lipkin's still has a very long way to go.  They are trying to raise $1,000,000 and have just passed the $100,000 mark.

Wednesday 6 August 2014

Muscle acid and ME/CFS

Yesterday I had my second "go" at the "normal" yoga class.  Whereas last week I spent the whole lesson smiling because I couldn't believe I was taking part and managing so well, this week my face was more serious,  showing much more earnest concentration.  I'm not sure this was a good thing as a couple of times I had to check myself from pushing and trying too hard.  I can't help that, it's in my nature and something that I have struggled to deal with mentally - the having to hold back and pace oneself.  I enjoyed the class and managed about three quarters of the poses.  I was most happy with the fact that there was quite a lot of bobbing up and down from front lying, to forward bends on the feet to completely upright and then down again.  Normally this sort of activity induces nausea and post exertional malaise due to Orthostatic Intolerance (OI), but yesterday I coped well.  I didn't manage it all, but, gave it a really good go.  So, maybe the Ivabradine that I'm taking for the OI is having some effect.  Unfortunately, the battery had run out on my heart rate monitor so I  was unable to check what was happening with my heart rate whilst I was doing all this bobbing up and down.
Talking of monitors, I have decided not to wear my fitbit this week, I did 47,000 steps last week another good one for me.  In fact, I'm not sure how I'm managing that as my thigh muscles are so sore all the time, sometimes my knees too.  Most of the time I am ignoring it and Ant kindly massages the knots out of them every morning.  I am convinced this discomfort is acid build up in the muscles, this is an interesting article about that  In my case, exercise of the thigh muscles seems to mean walking!  I am going to buy some beetroot juice today as I have read that drinking it helps to remove acid from muscles.  Ant has also been encouraging me to breathe more deeply as the pain you feel in your muscles can be caused not by the acid but by accumulating too many hydrogen ions in the muscle, getting more oxygen in and more carbon dioxide out can help with this.  Anyway, my muscles are struggling with activity and it's difficult to know what to do for the best - push through or rest them.  At the moment i'm pushing through, because if I wait for them to be "OK" i'll be waiting a long time and not doing anything.  Back to the Fitbit, I've been wearing it everyday for 18 months and I love it, I just thought I'd give it and me a week off!