Monday, 10 October 2011

Taking action & supplements

Not sure what's going on at the moment, another rubbish Sunday energy wise and still a little fatigued today.  Two nights of waking with symptoms and I'm feeling a little down about it all.  I can't help in my mind but link it to the activity.  So, rather than sit here pondering on it I have sent an e-mail to my Mickel therapist and I'm about to phone and make a follow up appointment with Dr Myhill.  I'm also going to make an appointment to see my Cranial Osteopath, he always makes me feel better.
I've mentioned my supplements several times in my blog, so I thought I would document what I'm actually taking right now.  These were all suggested after results from mitochondrial tests that look at how your body converts energy.

D-Ribose 5 times a day this is to help my ATP levels.  The body uses d-ribose to make brand new ATP as opposed to recycled ATP which is what my body is supposed to be doing.
Magnesium Once a day, magnesium is necassary for ATP to release it's energy and for oxidative phosphorylation (making ATP)
B12 once a day to help oxidative phophorylation
Niacinamide one a day to help vitamin B3 levels, again important in the oxidative phosphorylation process
L-carnatine twice a day to try and increase my levels.  It is essential to transport glucose in the form of fatty acids across mitochondrial membranes and into mitochondria where it acts as a fuel source for oxidative phosphorylation.
Co-enzyme Q 10 twice a day, this is essential for normal cell metabolism
Gluathione once a day, this is imortant for the process of detoxification.  It is required for GSH-Px which is an important frontline antioxident
Ascorbic acid I'm taking this once a day as my stomach is not acid enough and is therefore not digesting things properly.
VEGepa twice a day to replace contaminated fats in the cell membranes and fatty organs with clean fats.
Mineral Mix 3 times a day, a mix of 12 essential minerals
Biocare multivitamins 1 a day.  A mix of 23 vitamins and minerals.
That's it. 
Listing these has been a useful process, reminding me of why I'm taking them and what they do.
Follow up appointment now made with Dr Myhill.

Friday, 7 October 2011

Another go at Qi Gong

So, it took me quite a while to recover from last weeks expedition to the Qi Gong class.  My sleep patern didn't really return to it's usual until Tuesday night (6 nights) and I had a classic delayed reaction on Sunday when I had to resort to the sofa..  Strangely I was not put off by this experience, not sure why.
I decided to return again this week and only did 20  minutes of the class.  The teacher is very understanding and said that he understands the thin line I have to tread.  I also avoided one of the exercises which I did last week so I was a bit more sensible.  It feels pathetic that I had to leave such a gentle class after only 20 minutes, I can't believe it's me having to do that, I've always been so sporty, it seems so unreal in that respect.
I didn't feel good afterwards and had to stand down from my evening duties of transporting DD1 to her music class.  Then there is a sense of guilt that Ant has to be at work all day then come home and put DS to bed and transport DD1 to music and later back again.  I did mange to cook some pasta though.   The positive is that I actually slept very well, so that was an improvement on last week.  When I awoke this morning I wasn't fatigued and my heart rate was fine, but my muscles, particularly in my legs had a horrible feeling of agitation.  I await to see if I am hit with delayed fatigue in a few days.  Delayed fatigue happens when your body has to make ATP from scratch rather than recycling it from ADP which is what happens in your body if you don't have ME.  There is a good video that explains it here:http://www.freedomfromme.co.uk/blog/?p=307
I didn't manage to do any of the half mile walks for my GET therapy last week because I spent most of the week recovering from the Qi Gong.  I'm going to try and start this weekend.

Sunday, 2 October 2011

Qi Gong

I've got quite alot to blog about since my previous post.  The first thing to note is that following my fairly strenuous uphill cycle with son on the tag along bike last week there was no major reaction.  This is excellent news as my heart rate was definately increased during this activity.  So, no strange night time episode that night and no completely flooring fatigue in the following 2 or 3 days.
On Thursday I had an appointment with the CFS physio to discuss increasing my activity levels - a bit of graded exercise therapy (GET).  Although GET is one of the NICE (National Institute for clinical excellence) guideline approaches for ME it is also a little controversial within the ME/CFS community.  My physio says that this is because in the past it has been applied in a one approach suits all kind of a manner and that these days your  own body's response to the activity is taken into consideration.  Anywho, her plan is for me to walk half a mile a day at gentle pace for 7 days out of 5.  If after two weeks of doing this I have no negative response I can increase either the speed or distance by 10% for the following two weeks and so on.  I must alongside this be able to continue with my current baseline of activity at home.  I will give it a go.  When I asked about her experience of people using this approach I'm afraid it wasn't overwhelming - some people normally see some sort of increase - type of reply.  She was however very interested in my supplements and I told her that I thought they were having a very positive effect.
There is a class going on at the local sports centre called Qi Gong which I picked up a leaflet for some weeks ago.  It interested me due to the fact that it is similar to Tai Chi and I have a previous interest in martial arts (Karate black belt).  The class is also only an hour long and takes place in the early evening.  All these things I thought were in my favour.  I mentioned it to the physio at our meeting and she thought I should have a go if i wanted too.  So, on Thursday evening I pootled along and explained to the instructor that this was the first sort of formal exercise I had attempted for over two years and that I wasn't sure how it was going to go, but I wanted to give it a try.
The class was very interesting and I joined in with everything and it was all going fine and then all of a sudden 50 minutes in I instantly knew that I had overdone it.  There was no warning or gradual build up, just BOOM, that was it, I knew I could do no more and that actually I had gone too far.  I said my goodbyes and left.  I slept really badly that night, constantly waking.  It took me Friday to recover but by Saturday morning I felt okay again.  I have not been put off by this experience, I am going to go back this week but will only do 30 minutes of the class and then leave.
Yesterday I attended a day long introduction to meditation and visualisation workshop with a friend.  It was nice to spend a day relaxing and meditating, but it also showed me how far I have already come with my meditation practice.  I think what I'm doing at home is fine.