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.

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.

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.

Tag along

Well today the bicycle did come out of the shed : )  Not only the bicycle, but also my sons tag along bike that attaches to the back.  We cycled together down to the village to the library and shop.  Getting there is easy as it's mostly down hill, still, when I got off the bike in the village I felt light headed.  We did the few things we had to do and then mounted our bikes again ready for the return journey.  Coming up the hill I realised that my gears 1 to 7 weren't working.  I anticipated that we would have to get off before the top and walk but actually we made it all the way.  I had to shout lots of encouragement to DS behind me to peddle like billyio as my engine was running out of power.  Pedal he did and together we made it all the way home.  I felt quite emotional when I got inside as I thought about us coming down a slope in the lane both exclaiming "Wheeeeeee" as our bike freewheeled towards the final incline before the house.  Doing something physical with him like this felt great.
This situation came about following a Mickel therapy session I had this morning via skype.  We talked about my sleep patterns.  Also about not feeling guilty about my current need to put myself first.  I need to look after my own needs so that I will be stronger and be able to do more for the family.  We also talked about my fear to commit fully to Mickel because of it's conflict with lots of the medical advice I've been given.  This is a tricky one.  Anyway, I was inspired to get on my bike.
My challenge now is to not think about what negative effects the cycling will have on my body, but to enjoy the fact I've done it and look forward to and plan my next activity.  It is about retraining my brain to have positive thoughts associated with physical activity and get rid of all the horrible thoughts of symptoms and funny turns that my brain currently associates with physical activity.  Hopefully today will have gone some way to helping that.
Earlier this week we took in a delivery of logs.  They are emptied on to our drive and we have to wheelbarrow them around to the back and load them in the log store.  Eighteen months ago I tried to help Ant with this task and made myself ill with a relapse that lasted several days.  This week however I'd like to think I was a real help.  I moved about a quarter of the logs in the wheelbarrow before realising that I'd done enough and stopping.  This was a good achievement.  It's really useful to have a like for like comparison with such an activity to see how much I've come on.  The only negative effect?  My body was aching for the next two days, but how nice to have a body aching from some physical activity : ) 

A visit to the cranial osteopath

This morning I have been to see my cranial osteopath.  It takes me around 50 minutes to get to his practice and fortunately as Ant is on holiday he offerred to drive me.  This is just as well as I think I would have struggled to drive back today, it certainly wouldn't have done me any good.
Lots of positives came out of my appointment.  I explained that I had been feeling really good even though I'm showing all sorts of symptomns and he thinks these symptomns are all signs of change taking place in my body.  He also doesn't think that my body is struggling with the decrease in betablocker.  He thinks that my circulation is infact benefitting from the reduction, so that's good.  We talked about ascorbic acid and I mentioned Mickel Therapy.  He is concerned about me overdoing it a bit.  I need to be mindful of this and not too impatient.
The treatment was slightly different today.  He spent the whole time on my head and towards the end of the session his activities seemed a bit more forceful than usual, it is usually such a gentle treatment.  When he'd finished he said you're probably going to feel some after effects from  today's session.  See how it goes over the weekend and just go with it, but if there's anything that your concerned about still on Monday then call me.  So, this could be bad timing as this afternoon the whole family have driven off to Yorkshire without me.  I'm now worried I'm going to get some symptoms or even one of my funny night time episodes following the treatment and Ant isn't going to be around.  I feel so much safer when he is there because he knows just what to do and say when these things happen.  When I hear myself saying this I feel really pathetic.  I have been such a strong woman in the past, but now being on my own concerns me.  Anywho, the positive side of this is that I can just spend the whole weekend recovering and relaxing and not under any pressure to do anything else, which is probably a good thing.
I finished my appointment at 11.30am  and was completly wiped out when we got home so have spent the afternoon on the sofa.  Five and a half hours later I'm starting to feel some energy return. It was a good appointment today, I just hope I don't get any nasty response, but if I do, i'll deal with it : ) 
A tv dinner beckons.

Update

Well the bike is still in the shed, haven't gone as far as getting that out yet, but I have walked down to the village this week.  It's been a bit of a mixed time since last posting.  Everyone has been telling me I look so well and I have such a good colour these days which is great to hear, but at the same time I have had mouth ulcers and cold sores and spots and my hair continues to fall out!  Despite all this I DO feel better than I have for two years.  Very strange.  I know that my cranial osteopath will probably say that this is a sign of infection trying to leave my body, I hope that's the case.
Sadly, my heart rate now seems to be responding to the fact that I've cut down my betablocker medication and my heart rate now seems to spend alot of time at around the 100 bpm mark.  This didn't start until about three weeks after I'd reduced my medication so I had thought all was going well and there wasn't going to be a reaction.  So, my plan to reduce the medication again at the start of September was put on hold.  I'm going to wait a little longer and see if it settles back down.
This week I heard from a friend who has CFS.  She has been so well for years and was back to doing things like exercise classes at her local gym.  I always took much encouragement from this as she had been so bad at the start of her illness, far worse than I, so it was very motivational to see her doing so well.  Unfortunately she has had a relapse over the summer and been unwell for about 8 weeks.  This shocked me.  She seems to have taken it in her stride and says when this happens these days she knows she will get back to her previous activity levels again.
On a positive note I went along to a lunch time meditation session today, just for half an hour, but it was very interesting.   It was a small group, but a real mixture of people.  I'm not sure I will go again, but I'm  glad I've gone just to see what they get up to.  It sort of illustrated to me that actually my meditation is going along okay just as it is, me and my ipod 

It's been over a week since I last posted.  After feeling weak on Sunday it took me Monday to recover and I felt much better by Tuesday.  On Wednesday I had a follow up with my Mickel therapist which was probably quite timely to try and keep me back on track after my wobble at the weekend, the rest of the week was good. 

Yesterday we went to the forest for a walk.  I walked a mile and a half, but my legs felt tired and weak. I don't know now whether what I'm feeling is fatigue or whether it is deconditioning because my body hasn't done anything physical for the last two years (my thighs are so much smaller than they used to be).  This situation is creating a bit of a crisis of faith in the Mickel therapy.  It goes against all the traditional pacing advice that I have been given and have followed for the last 6 months and I am very nervous of that.  Ant says I should combine the two and continue with the Mickel stuff but pace myself too.  I can see how this might sound sensible, but actually I feel it would probably mean not doing either properly.  I am going to persevere with the therapy I need to give it a good shot.

One good thing is that I have manged some weeding in the vegetable patch this week which felt really good.  I have missed gardening, it is something I struggled with because of the continual bending, but this week it has been fine.  We have a fine harvest of onions, potatoes and courgettes which have been adorning our plates for a few weeks now.

I'm on the verge of getting my bike out of the shed.