Thursday, 21 February 2013

Buteyko breathing

So, I'm starting to feel vaguely normal again today, the Wednesday routine still feels like its taken a little bit more out of me than it normally does though.
I had a Perrin appointment yesterday and we discussed Buteyko breathing.  This is a method of retraining the breathing, most commonly used with asthma sufferers.  If I have understood correctly, the Buteyko method can be used to rebalance acid levels within the blood and this can help more oxygen get to the cells.  It appears that many people with ME "over breath".  This makes it sound like too much deep breathing is going on, but actually it's the opposite, too much shallow breathing which results in too much carbon dioxide being expelled and the blood becoming to alkaline.
Feeling really rubbish again today.  Woke at 4.45am, 25 minutes later than the previous two days so that was good.  It was so hard to get up when I finally did at about 7.30am.  My legs are like lead, I felt sick after breakfast everything is so much effort.
I'm trying to do all the right things, there was not much food in the house this morning.  The easy breakfast choices when I got to the kitchen were toast or cornflakes, neither of which offer much nutritional value.  I sent one of the children to borrow an egg and made the effort to mix up some four grain pancakes which I had with blueberries. I've done my massage, I've popped my 8 morning pills and I'm sat here with a cup full of minerals.  I don't know what else I can do.  I need rest now.  I know that if this was the weekend and Ant was here, I would still be in bed. And that would be another day written off.  As it is, I have one hour to myself this morning then I will have to do some "creative" parenting so that I expend the minimum energy whilst doing my bit.

Saturday, 16 February 2013


It's a beautiful morning outside.  there was frost on the ground this morning, a gorgeous blue sky with just a few wispy pinky tinged clouds.  this is the sort of Saturday morning when we would normally get the kids out of bed and go to the forest for a walk.  this morning i just don't have the energy to do that, my legs are too weak.
So, I guess a fitbit tracker is only any use if you take any notice of it.  Yesterday I had done over 8000 steps, way over my 5000 step baseline.  Foolish on a day when I was also going out to a friends in the evening.    This is a predicament of my own making.  I chose to go for a walk down to the village with my friend and our children yesterday morning and I probably shouldn't have knowing that I was going out in the evening.  I just hate to make these decisions and in the morning, when I made that decision, I was feeling fine.  By the time it came to the evening I was already tired and not really great to go out.  It didn't help that our evening event wasn't even starting until 8pm, fine for everyone else, but I was already ready to retire to bed at this point.  I went because I wanted to catch up with my friends, because that's the calculation that you make, constantly.  I stayed too late as I often do and left at 11.40pm.  As my friend was seeing me out she asked if I had lost weight, "no" I replied.  "Your legs looked thinner"she remarked, "maybe it's just those jeans your wearing?".  "I've lost all my thigh muscle" I said " I used to have such lovely muscley thighs".  Her response...
"you need to get exercising", "I wish" I replied and left.
  This morning as I sit in bed with not enough energy to go out with Ant and help him choose a new coat, this conversation upsets me.  It hurts me,  I would love to be able to go to the pool and thrash up and down or play squash with Ant and the kids tomorrow morning or ANYTHING that vaguely makes me feel like I've exercised!  Anyone who really knows me and remembers the real me, would know how much I want to do these things.  What I really should have said to her was, "Do you even realise how much of an effort it was for me to even be here tonight?"  Of course I know the answer to that question, it's no.
I've shed a tear this morning, not in anger, but in frustration about this condition and in fear that it might never go away.  I've found this article about post exertional malaise
that I should probably send on to my friend, but I won't.  I might just have a chat to her next time we're on our own though.

Monday, 4 February 2013

Impatience and breathing in ME / CFS

I'm starting to feel a bit "fidgety" about how my recovery is going.  I know it's not possible, but I want to feel a constant forward motion and since Christmas I haven't really felt that.  I am 9 months into my Perrin treatment and recommend treatment time for me was 12 to 18 months, so potential still only halfway through with plenty more time for further improvements.  Someone I know with ME said to me the other day that steps forward often happen in bursts, so a plateau then a burst then another plateau and so on.  I know this is sometimes the case, but I just feel impatient.  I feel I need to personally refocus on what I can do to help things along.  I guess I was on a bit of a downer about this when i attended my Perrin appointment last week.  My therapist asked what my current recovery goals are and I didn't really know.  So, I need to sort that out.  I am a list maker and a box ticker.   I get a great sense of achievement striking things off a list, and I currently have no list.  It needs to be small achievable things leading to a bigger goal.  We discussed the idea of looking at my breathing patterns as she had come across some interesting information about it and the effect on the autonomic nervous system.  I will write more about this when i have read more, but here's one of the sites I've been looking at: Disordered breathing in ME  This morning I started a new breathing regime 25 minutes of deep diaphragmatic breathing twice a day, breathing in for 6 seconds and out for 6 seconds at a time.  It feels good and it makes me feel like I'm doing more to help myself.