Tuesday, 29 November 2011

More good steps forward

On Friday the relapse finally came.  I had been expecting it, I have been rushing around like mad for about two weeks really.  Not physical exercise, but more driving and rushing from here to there along with quite a bit of mental stress too, tied in with buying houses and trying to get solar panels on the roof before the governments Feed in Tariff changes in December.  By Friday afternoon I knew I was coming to the end of my energy, but I was due to go out to a friends house for a small get together in the evening and foolishly that's what I did (when will I learn?).  That finished the energy levels off of course and by Saturday morning I was really fatigued.  It's the weirdest thing, at times like this my thighs which have always been so strong just feel so weak and jelly like .  I was due to go out for a meal with friends on Saturday evening and  rested all day in the hope that enough energy would return for me to do so, but it didn't.
Fortunately Ant knows that I am good for nothing when my body is like that and he springs into action taking over all those things I would normally do.  He ran the children around to their different musical and sporting events all day and made all our meals and put little one to bed for me.  He must have been shattered.
Two big positives came out of this episode though.  Firstly, whilst I was fatigued on Saturday I did not have the horrible feeling of "malaise" or illness that normally accompanies such fatigue which was good.  Secondly, I recovered very quickly, by Sunday I was feeling much better, normally this would take 3 or 4 days.  These I am taking to be more signs that my recovery is moving in the right direction : )

Friday, 25 November 2011

Translocator Protein Function results

On Tuesday the translocator protein function tests came through from Dr Myhill's office.  It all delves far deeper into the science than I pretend to understand, but the general message is that I have "quite marked damage to mitochondrial membranes, almost certainly because of oxidative stress secondary to poor antioxidant status.  A further feature of this are the high levels of aldehydes and trace malondialdehyde."  There is also lipid damage and diolein.  I have low normal levels of potassium, very low magnesium and low zinc, all essential in the production of energy.  I am already supplementing all of these.
The main treatment suggestions which have come from these tests are to improve my antioxidant status (not sure how that's going to happen yet) and FAR infrared saunaing, little and often, to try and mobilise the chemicals which are stuck onto the mitochondrial membranes and possibly the DNA.  It is supposed to be good for cell health in general.  So far I haven't managed to locate a FAR infra red sauna locally, it's looking a bit like I might have to purchase one.  This weekend I am going to try an epsom salts bath it is supposed to be very good for magnesium absorption.
Yesterday I went to see my GP to organise taking some pancreatic enzymes.  These will help me to digest my food better and hopefully take more goodness from it.  He is getting to know me now, second guessing that I probably wouldn't want to take another tablet (an anti acid) with the enzymes if I could avoid it.  So I went home and took the first one with my lunch only to sit with heart burn for part of the afternoon...perhaps I should of taken the anti-acids after all!  It wasn't bad and I'm going to try without.  I have also re-added Selenium to my supplements.  I was supposed to take it at night and I felt it was disturbing my sleep so stopped taking it, so now I'm taking it in the morning.
Energy wise I've had a really good week this week.  Doing more physically and mentally than I have for a while.  I'm almost waiting for the kickback in the form of fatigue, but interestingly even though yesterday and today I can sense my body's need for rest and relaxation, it has not yet fallen into fatigue.  I need to take it easy for a few days and not push it.

Saturday, 19 November 2011

A Positive Day

I had a really great appointment with my Cranial Osteopath (CO) on Thursday.  He said that evreything in my body is moving better than it ever has since I started seeing him (about two years now).  He was very upbeat and commented on how far my system has come since my initial visits.  Of course, I know that everything is slowly moving in the right direction, but it's always encouraging to hear someone else say it : ).  There is apparently just one area of resistance in my body now and that is around the upper left side - ribs, shoulder, diaghphram.  It's like my body is being overly protective of itself in this area, interesting as it's the area connected to the heart.  Anyway, my CO doesn't normally say very much, so when he does I take notice.  I am sure he will sort this left side issue out.
So, I was on a bit of a high driving home.
Had a few hours at home taking it easy - sometimes seing the CO can completly wipe me out - then it was up to the hospital to see the heart specialist.  Haven't seen him since January so there was lots to talk about.  I told him that I  now cut my betablocker in half so am only having half a tablet every morning (have been doing this for about two weeks, down from three quarters) and we talked about what effect this might have.
He is also keen for me to come off them in time.  He is organising a tilt table test for me and also going to do another scan.  I asked him all my silly paranoid questions such as is playing the bassoon putting a strain on my heart? - It is really hard work.  The answer is that it shouldn't, infact it might help - hurrah!  So, another upbeat appointment.
I'm reading a book at the moment called Bounce: The Myth of Talent and Practice by Mathew Syed and it is making me re-evaluate the way I am looking at things.  In particular my illness.  One of the problems of CFS/ME is that you come to see yourself as a sick person and that is not neccessarily a good place to be mentally.  It becomes part of your identity.  I have heard myself a couple of times over the past few months when relevant in conversations saying to people that "I have ME".  As I say it I hate the sound of it, yet I still say it.  Why don't I say "I am recovering from ME"?  Bounce has made me re-think things.  Most people who set out to achieve something in the world have a strong belief that they are going to achieve  it.  There is no room for doubt and I do occassionally have doubt.  I must put doubt aside and take on the principles of sports psychology...I AM going to recover from this.  It's a fascinating book, well worth a read.

Thursday, 3 November 2011

Follow Up with Dr Myhill

Earlier this week I had a follow up telephone appointment with Dr Myhill.  It was very useful as we were able to talk through all my test results thus far and discussed many things.  The outcomes are that I am going to have a Translocator Protein Function test done which will hopefully give more information about why my energy cycle isn't working efficiently.  I'm also going to take some pancreatic enzymes to help with digestion.  Interestingly Dr Myhill said she thought it was too early to embark on the Graded Exercise Therapy suggested by my physio, she said that ideally I should wait a year after starting the supplements!  That's still 8 or 9 months away.
She also suggested that when I've finished my current batch of supplements I should start taking them transdermally (this will mean I don't have to try and digest them all).  This will be provided for me in a spray form which I just spray over my body after my shower in the morning.  Wierd, but it will mean that I can stop forcing down  the half pints of warm orange juice I'm currently taking lots of my supplements in. 
So, we'll give all this a try and see how it goes.