Wednesday, 29 August 2012


Yay!  Today has been a good day.  At lunchtime I went to a yoga Class at the Therapy Centre.  It was wonderful.  A darkened room, incense, relaxing music and a small, friendly group of people.  The session was just an hour long which was one of the things that attracted me to it.  All the yoga was done either sitting or lying down which sounds lame but is where I'm at right now.  I couldn't help but smile to myself during the class just because I was happy to be there taking part.  Earlier this year just 20 minutes of a Qi Gong left me feeling horrible and knowing I couldn't go back as my body wasn't ready for it.  Today I left the yoga session after completing the whole session, but,  not knowing what effect it was going to have on my body.  I felt light headed afterwards and a little spaced out when I reached home.  I could easily have gone to bed and slept, but couldn't as My littlest was around.  So I did feel a bit wired, but what I didn't feel was I'll - no sickness and no malaise.  I need to wait and see how I recover now.  Hopefully I will be feeling a little stiff tomorrow after all the stretching I did today.
My activity levels have definitely gone up.  In the last week I have walked a mile on three separate days.
Had a good Perrin session yesterday.  I decided to walk down to the appointment, but I'm not sure I'll do that next time, the walk home was hard.  Normally I have about 30 minutes to an hour after the session is finished before I start to feel the full effect, but by the time I had walked home yesterday I was completely spaced out.  I managed to eat dinner and then went straight to bed.  I never sleep well the night after a treatment and last night was no exception, but I was feeling good again by this morning.
I'm soooooo nervous about overdoing it, but also very excited by the extra activity.

Friday, 17 August 2012

Cranial osteopathy calms my system

So, yesterday evening my bubble burst.  My heart rate went up and I couldn't bring it down.  I laid in bed so disappointed and thinking that I'd blown it and I'd have to go back on medication etc etc.  It was still up this morning.  Fortunately I had an appointment booked with Carl my cranial osteopath so I left he house at just gone 7am to make the 50 minute drive.  I haven't seen him for while so filled him in on how things have been.  Within 10 minutes of being on his table I could feel my body calming down.  He was generally pretty pleased with how I was doing, saying that it felt like just a small blip, not a massive relapse.  He likened what he was feeling inside to how someone's body feels when they come off a hairy scary theme park ride.  It's just that My body just doesn't calm down as quickly and easily as most peoples would.
The stomach tightening that I experience when he touches around my left bottom rib is definitely lessening.  I hope this is a sign of something releasing in my system.
He did comment however on how I was holding so much emotional tension around the solar plexus area and encouraged me to meditate on my relationships and in particular the difference between my expectations of my roles in these relationships and the reality.  Wise man.
Sometimes I'm never quite sure how I manage the drive back from these treatments, but I do.  I could feel that Carl had worked his magic and my heart rate had calmed down again before I had finished the journey home.  I spent the rest of the day on the sofa completely wiped out.  That night I slept for 7 hours straight, can't remember the last time I did that, it felt brilliant.
DS1 is really keen on riding his bike at the moment and I find it really hard to say no to something like that, so yesterday I took him to a little off road track near where we live.  It was his first time "off road" and he had a ball zooming through the muddy puddles.  I couldn't say no again when he asked to do a second circuit, but I had to put my foot down at the request for a third circuit.  My legs could do no more.  Just getting the bikes in and out of the car is a real effort for me.  Fortunately ds1 went  off to a three hour party in the afternoon and I took myself off to bed for 2 hours.  The difference these days seems to be that I can do these little bits of exertion now and although they take their toll and I have to rest and my body feels internally agitated, I don't seem to get that horrible feeling of malaise and illness that I used to.  This is a definite change since starting the Perrin Technique.
I have spoken to Dr Myhills office about having my mitochondrial function retested as it has been a year since I started my supplementation program and I would be keen to see how my results would look now.  I think I will organise it soon.

Thursday, 9 August 2012

Perrin technique, symptom changes?

In terms of my symptoms, there are three ways these generally show themselves:
1) straight away - I can be doing something and all of a sudden my legs turn to lead and I'm instantly hit with overwhelming fatigue
2) A night time attack - if I have done something in the day that has upset my system then I can be woken in the night with night time shaking followed the next day with fatigue
3) delayed fatigue response - 2 or 3 days after my body has exerted itself in someway I will get the delayed fatigue commonly associated with ME / CFS.

The reason I am listing these is because I am getting the first two less and less.  This wek  whilst on holiday I have walked so much more than I have in recent weeks.
Yesterday I trooped around Paris in 25 degree heat - something unimaginable for me 6 months ago.  Don't get me wrong, my walking is laboured and my pace very slow, but I kept going.  By early afternoon I was feeling a little hysterical.  I had a manic smile on my face knowing that if I let it drop I would burst into tears.  My legs were soooooo tired. As we approached our destination, I welled up a few times as I thought about the fact we still had the return journey to do to get us home, it seemed overwhelming.  I kept smiling and putting one exhausted leg in front of the other.
Something was different about this experience.  From the hips down my body felt completely exhausted, but from the hips up my body felt fine.  Normally my whole body would be effected.  My legs were heavy, but they were also aching with the effort of exercise and this is something I was very happy to experience in some sort of masochistic way.

I obviously didn't attempt to climb the tower, but the 45 minute wait that I had whilst the others did climb the tower gave me some recuperation time.  I made it back to the train and home to the apartment.  We were late back and then there was dinner and recounting our day to those who didn't come.  By 10.30pm I started to feel I had overdone it and said my goodnights.  I laid in bed and could feel my heart pounding in the way it does when i am fatigued and it is too much effort just to lie there.

The point is, I did make it through the day without my legs turning so much to lead i couldn't put another step forward, I didn't have a night time attack either, so now I must wait and see whether number 3, the delayed fatigue will get me.  Or maybe my leg muscles will just recover over the next few days and be stronger as a result of all the exercise they have had.

I can't help but feel a little nervously optimistic.

Wednesday, 1 August 2012

Beta blocker free

Feeling a bit rubbish today.  Woke up feeling like I'd been run over by a bus again today.  I ached all over my back.  I've Ben wondering if I overdid the Perrin back stretches with my back wedge yesterday.  For the last week I have Ben raising my arms into the air and behind my head whilst on the wedge, maybe  I'm doing it wrong.  Shame I've not got a treatment this week so I can check.  Took DD1 and DS1 out in the car this morning, by the time I was coming home at lunchtime I was completely washed out.  I was driving along thinking I've just got to get home, I had no energy.  Another afternoon on the sofa...thank goodness for the Olympics : )
On a much more positive note I have now not taken any beta blockers for a whole month, "hooray!". It has taken me a year to ween myself of them very, very gradually.  The best of it is that this month my heart has felt really calm.  It has been up a few times when I've been really tired, but mostly it's felt really good.  I'm so pleased about this, it is a worry when your heart is doing something a bit strange and nobody can really tell you why, so it is a relief that things appear to have settled down.  This is an important step in my recovery.