Monday, 25 March 2013

Relaxation and Thai massage

Last night I indulged myself for an hour and a half in a relaxation with Thai massage session.  In the whole session we adopted just 6 yoga poses each of which were held for 10 or 15 minutes.  Whilst we held the poses the instructor visited each person and gave Thai massage.  It feels fantastic and I always feel invigorated after a session like this.
I am feeling a bit better in general.  I don't feel sick any more, the nausea has gone, now I just have to regain my strength.  Each day it's getting better.
I spoke to Dr Perrin today on the telephone.  I wanted to speak to him about the osteopathic treatment I had a week ago and how it had affected me.  He has suggested I go and see him at his practice in North London, but it's the problem of getting there and more so of getting back after a treatment.  I'm not in any rush to go and see him, but maybe if Ant is off on holiday in the next few months we could take a trip.  It was kind of him to give me some time on the phone today.
I've been reading Coping with Chronic Fatigue by Trudie Chalder.  It focuses on graded exercise therapy and cognitive behavioural therapy.  The information about graded exercise therapy doesn't sit very easily with me at all, but it has useful sections on managing activity levels and challenging negative thinking.  Reading the book has made me think that I should monitor my activity and fatigue levels by the hour for a while and reassess my baseline activity.  I haven't done that for a couple of years and I think it might be useful.

Saturday, 23 March 2013

Brain Fog

When I woke this morning at 5.30am  my head seemed so much clearer than it has been.  One often hears of the ME symptom "brain fog" and it did indeed feel like a fog had lifted this morning.  there are some interesting explanations of why we get brain fog in answers to a query about brain fog (including one from Dr Myhill) HERE 
It's now a week since the Osteopathic manipulation that seemed to effect me so badly and my body has still not recovered, everything is still weak, especially my legs.  Today Ant drove me the 50 minute drive needed, through snow, to get me to my Cranial Osteopath.  I had an hour long treatment and an interesting discussion about green energy, before Ant drove me home where I spent the rest of the day snuggled up to my youngest on the sofa.  There's nothing like a poorly child to take your mind off your own discomforts.  He promptly threw up on the sofa / floor / clothes / his DS.

Wednesday, 20 March 2013

Not the best week

Yesterday morning was my second Appointment with the local osteopath who I am visiting to manipulate my spine.  I was very impressed that since my first appointment with her two weeks ago, she had taken the trouble to purchase the Perrin Technique book and had come to our appointment armed with notes she had taken.
The treatment took about 35 minutes with work on my neck, thoracic spine and ribs.
In the afternoon Ant and I went to go and look at stone tiles and worktops for our kitchen, but I was acheing all over and just couldn't focus on the job in hand.  There are too many decisions to make around this new kitchen, I don't want to have to think about it.  Today I couldn't even decided if I want a round roll or a baguette roll for my lunch!  Pathetic.
I went to bed really early with my youngest and he read me a bedtime story : )
Today I feel so nauseous, worse than I remember it from when I started my Perrin Technique almost a year ago now.  My back aches from the manipulation and I feel sick.  It's difficult to remember that feeling like this is helping to make me better.  Today I feel like i don't want to put myself through another treatment and feel like this again, its yet another lost weekend.  In Perrin terms the nausea is my liver dealing with all the toxins being pushed through my system - a good thing, but it feels yucky.
It's now Wednesday and I still haven't recovered from Saturdays osteopathic treatment.  In fact I have given up trying to battle on and will spend the day in bed.  I will have to call in help today.  One daughter needs to get to a singing lesson this morning, another needs picking up from college later so she can get back in time for a music lesson and I'm hoping that a friend will take my little one out with her son for a couple of hours at lunchtime.  He thought it was amusing this morning when I told him he was going to do his schoolwork up here in bed next to me.
I try not to have to call on people too often.  In fact I can't remember the last time I spent a weekday  in bed, whilst Ant is out at work.  I try and hang on until the weekends, but today I just can't face it.
I woke at 3am this morning and laid there for nearly two hours before I woke Ant and told him how rough I was feeling.  "What if the treatments gone too far this time?  What if I've set myself right back to the beginning?  What if I've reversed all the good I've done over the past few years?"  He tried to talk some sense into me, I shed a few tears.  It's scary when your body feels so weak just lying there, not even trying to do anything, just lying in bed.
I must try and think positively about all those nasty toxins that have been released from my system, that are coursing around my body, soon to be expelled for good. Hurrah.

Tuesday, 12 March 2013

Perrin Technique - post treatment exhaustion

Today I went for my three weekly Perrin technique appointment.  I walked there which is a good sign, I haven't walked down to the village for some time.  She spent lots of time working on my back today and also did a very strong and quite long chest massage.  We talked about all the things that were going on, my recent trip to the Osteopath, my cold and the Buteyko breathing exercises amongst other things.  I walked back home feeling very positive.  I feel I am being very proactive again now which pleases me.
By the time I finish my walk back home, the effects of the treatment are beginning to show themselves.  The setee was calling out to me, but I knew I had to prepare myself some lunch and a drink before I sat down or I wouldn't want to get up later and do it.  These tasks accomplished, I made for the sofa and spent the rest of the afternoon there.  As the evening has arrived I've begun to feel worse.  It's difficult to describe, but my heart rate is erratic and high, my legs are heavy and weak, my neck is aching and my head is fuzzy.  This is the result presumably of the toxins being released into my system.
I've retired to bed in the hope that by the time I wake up tomorrow I will be feeling better and my body will have dealt with the worst of it.  I'm sat here now thinking back on my first ever few Perrin appointments and the gentle treatments I had in those first few sessions And how my body used to take several days to recover.  I've come along way even just to tolerate the treatment that I had today and now I'm expecting that my body will shake it off by tomorrow!
I am going to ask my GP if he will refer me to the local hydrotherapy pool when I see him next.

Sunday, 10 March 2013

Anaerobic threshold and ME / CFS

I didn't have a brilliant reaction to Friday mornings yoga class.  I felt washed out on Saturday morning and had to go to bed for a rest in the afternoon which I haven't done for a while.  On a positive note my legs were aching in a stretched and worked sort of way, which is a feeling I enjoy as it happens so infrequently.  So, the yoga did push my  body and the weariness I felt on Saturday morning is probably a sign that i did too much.  This has not put me off, I will go again and maybe not do quite so much of the class until I find a comfortable level that i can build from without creating symptoms.
I have had a lovely mothering Sunday today, the family have been so thoughtful all day.  I had some lovely presents too...a new bassoon reed (I'm practising alot at the moment), some white chocolate (I don't eat brown chocolate because of the caffeine content) AND a heart rate monitor that I have had my eyes on for some time - it was more like a birthday than Mothering Sunday!

Polar FT7

 It's not too big and bulky, it looks just like a normal watch.  I won't wear it all the time, I'm going to use it for two reasons:
  1. To keep an eye on my POTSyndrome and see what sets it off
  2. To log my heart rate when doing any physical "exercise" such as going for a walk as I have read that if you keep your heart rate below your anaerobic threshold you might be able to exercise for longer and I would like to try this out. There is an excellent blog post explaining this: click here to read more about this     

Friday, 8 March 2013


Today was a good day.  This morning I went to a "normal" yoga class.  The class I normally attend at the Therapy Centre is all done in lying or sitting position and I have been finding this very manageable - with no increase in symptoms as a result of attending.  So, I figured I might be ready for something more.  I decided to attend a class that was taken by the same teacher that does the Therapy Centre class, so that she would know what the situation is and what I'm capable of.
I didn't feel brilliant when I got up this morning, my body felt very heavy, so it was a bit of a gamble going today.  I remembered something someone said to me a couple of weeks ago - when your body doesn't feel like it wants to do yoga, that's the best time to do it.
I strapped myself up to a borrowed heart rate monitor and went along.  The class was one and a half hours long and I didn't manage every element of the class.  I sat and rested at a few points, but never for very long and I had to adapt lots of the moves, I did lots on my knees or sitting rather than standing.  My legs felt very weak at points in the class, they struggled to support me in warrior or triangle pose for example.  I sensibly didn't do anything where I dropped my head lower than my chest - I've learnt my lesson on that one.  But, I did enough to make it worthwhile going along.  I still find it sad that my body can't cope with a yoga class, but it doesn't get me down as much as it used to, there is much more acceptance, or maybe I'm just used to it, it doesn't shock me anymore.  On a positive note I managed lots and its a starting point, my goal now is to get through a whole class, doing all the exercises.  I will know when I can do this that it will have been a significant step forward.
The yoga class was followed by lunch with girl friends, a very nice way to spend the day.

Saturday, 2 March 2013

Manual manipulation

My body seems to be shaking off the cold pretty well.  I feel better today than yesterday so hopefully this will continue in normal fashion.
Today I went to see an Osteopath for some manual manipulation of the thoracic area of my spine, to try and get more movement into that area.  I hope that this will help the Perrin technique to continue working for me.
The manipulation felt very satisfying, one in particular in the left side of my neck has definitely increased mobility in that area.  My left rib cage and shoulder are skewed and the left side of my diaghphram tight.  I guess we won't know if this is as a result of my fall in the park in August 2009, but it seems quite coincidental.
Amanda the Osteo was not familiar with Perrin technique so I showed her the book and some of the photos and she could instantly see what Raymond Perrin was aiming to achieve.
There were a few  uncomfortable techniques one of which was a lymphatic pumping technique.  A finger applied pressure near my left clavical whilst my left arm was moved in circles - still aching there now.  Luckily we dont have much on this weekend so if it does wipe me out a bit tomorrow, it won't matter.  She wants me to go back again in two weeks.
Unfortunately,I seem to have shared my cold germs with almost everyone else in the house now.

Friday, 1 March 2013

Immune system and ME/CFS - I have a cold!

Finally, an answer to why my symptoms have been worse than usual with seemingly no physical trigger.  It has been like this for just under two weeks.  Two days ago I began having PROPER cold symptoms, my body has obviously been trying to fight off some sort of cold infection.  This cold feels significant because as I think I've mentioned before I haven't had any sort of cold or bug since I fell ill  three and a half years ago.  This is due to the immune system being overactive.  So, I am hoping that the fact that I have caught a cold means that my immune system is calming down and maybe normalising, that's my hope anyway.  So, I was really pleased to have caught my first cold, however, today is morning three of my cold and I have to say the novelty is wearing off!  I am full of it and may well run out of tissues today.
The thing I am interested in now is how my body deals with it and seeing how it will effect my symptoms, how quickly will I recover.  I also have a little concern about what happens next.  If you have ME there seems to be two general ways the body responds firstly, as I found, you tend not to get bugs as your overactive immune system is fighting them off constantly or secondly, some people almost seem to have a per enact cold.  The reason for this is that the normal symptoms that we associate with colds - runny nose, sore throat, swollen glands etc. are not the cold themself, they are the immune systems response to it, so, for some people with ME their overactive immune system is constantly producing these"cold system" responses.  I'm just hoping that my body doesn't now somehow not recover properly and fall into that second category.
The good thing is, I have absolutely nothing on today.  I need to give my body every chance to fight this cold and clear it away.  I am going to do as close to nothing as is possible with a home educated 7 year old In the house.  I am aiming to do under 2000 footsteps.
On Wednesday I went to the hospital to see the gastroenterologist.  He was pleased with the previous blood tests he had done.  I don't have pancreatitis and my ferritin levels although low normal were good for me.   I also asked him to check out the hormone level results that my heart doctor recently requested.  I thought they had come back normal, but It turns out that the lab had refused to do them.  The Doc said he thought that this was because the lab thought there wasn't any point doing  a one off hormone level test on a woman of my age.
The gasto doctor is organising a new prescription for me for my  pancreatic enzymes.  I currently use Creon 25000 and the new ones are Creon 10000, a smaller dose.  The idea being that I keep both and only use the higher does when I feel I need to and see if I can use the smaller dose in between.  I am happy with this.  Not keen on taking meds, so a smaller dose is good.