Pancreatic investigation and cranial osteopath visit

Two things to mention this week.  On Wednesday I went to the hospital to see a doctor about my pancreatic function.  My heart doctor had referred me I think with the idea of having an efficiency test done on my pancreas.  After discussion with the doctor he decided to do a test for some kind of pancreatitis.   I'm sort of expecting the blood test to come back negative.  I have had lots of blood tests done over the past three years and with the exception of Dr Myhill's mitochondrial tests none of them have really found anything.  He's checking my ferritin levels too as they haven't been done since January.
On Saturday Ant drove me to see the cranial osteopath with the magic hands.  I hadn't been for quite some weeks but the best night's sleep I have had for ages was the night of my last visit to see him and I craved that again.  Normally with two wakings in the night, I have still been waking up between 5 and 5.30am and it's too early.
As usual I'm not really sure what he did, but by the time we got home I was good for nothing and went off to bed, it was about 11am.  I stayed there until about 2pm and then moved to the sofa.  It's such a weired spaced out feeling.  I stayed there for the rest of the afternoon.  In the evening we were due to go to friends for dinner and we did, but I really didn't feel up to it and we left relatively early.
After a nights sleep I have recovered a lot, but still feel a bit "heady" and have that vague sore throat ness that I'm getting used to now.
It's been 3 weeks since my previous Perrin appointment and I'm really looking forward to going on Tuesday.

Perrin technique important reminders

A strange two weeks.  It's been one of those times (which I have experienced before) where my body is showing signs of being run down, mouth ulcers for example but actually I feel quite well.  Not sure what's going on really.  I found myself leafing through Raymond Perrins book about The Perrin Technique last night and reminding myself of some of the key points.  His views on the sympathetic nervous system seem to ring so true to me.  I am lending the book to someone else in the village who might benefit.  It's very difficult not to say to others that I know with the same condition "you MUST do this" because it is working so well for me, but I know everyone's symptoms and situation are different.  I feel so lucky that financially for example I have been able to spend whatever I need in terms of treatment and I am very grateful for that.
One good thing is that I'm finding it easier to meditate again now.  I've also managed a bit more reading which is useful as I have a pile of books waiting for me.  This pile only ever gets bigger.
I've been attending my weekly yoga class at the therapy centre and am coming to enjoy yoga for its own sake rather than just because I think it will help me.  It is the case though that a lot of the exercises we do complement the Perrin Technique well as there is lots of twisting and flexing of the spine.  One of the things that I read in the Perrin book last night was that even when recovered and out of treatment you must still do your spine rotation exercises three times a day for life.
Another important fact I read whilst flicking through the book was about convalescence.  It is important in this recovery period and as you start to feel better to stick to the "half rule".  This being that you should only do half of what you think you are capable of doing, so, if you think you can walk a mile only do half a mile and so on.  This continues to be important in the early days after completion of treatment.  Of course as you start to feel fitter, then half of what you think you can do is still more.
I think it was probably a timely revisit to the book to remind me of these things.  It is easy to get carried away when you're feeling good and push to the limits (Pilates class springs to mind).  I also find that on good days its easy to forget to do my self treatments especially in the middle of the day as I can be busy doing something rather than focusing on my next treatment.  Although this is good in one way, I mustn't let it slip, I need to carry on with the massages and rotations.  I have reduced some of my supplementation though.  I now only take 2grams of d-ribose twice a day instead of 5 times a day and L-carnatine only once a day.  I've stopped taking ascorbic acid at the moment.  I have to say I am struggling with eggs right now.  Dr Myhills advice over a year ago was to have two eggs for breakfast every day.  I've tried to have 2 eggs a day since then and done pretty well, but now when I think of eggs I can feel my body saying "Noooooo, please, no more eggs!"  It'll be Hale & Hearty's gluten free pancakes this morning - delicious.
Look at me blogging about reducing supplementation and recovery and "after completion of treatment".  This is good : )

Tiredness

Today I have experienced the wonderful feeling of 'tiredness'.  Some might think it strange that someone with Chronic Fatigue Syndrome would say this, but the sort of tiredness you get with fatigue is simply not the same as the everyday normal tiredess that healthy people experience and which I think I am experiencing now.
I had a brilliant nights sleeep last night.  I slept straight through from 10pm to 6am.  I honestly can't remember the last time I did that, I normally sleep and wake in three hour cycles and have more recently been waking at 5 am again.
Right now I would like to stay up and read my book group book - The Personal History of Rachel DuPree - but I would be foolish to ignore the normal, natural signs telling me to sleep.

Pilates

On Wednesday I left the house to go to my yoga class but when I sat in the car it wouldn't start.  This was very frustrating but there was nothing I could do.  It made me realise how much I was enjoying the sessions that I didn't want to miss one.  Anyway it opened up a new opportunity to me, I decided to try the Pilates class that happens on a Thursday instead.  I knew I probably couldn't do the two classes in a week so this was a chance to try it.
The pilates class was small, just three of us and I managed to do it all.  The things I seem to have problems with now are those where I'm bending over and my head is lower than my shoulders or where my arms are above my head or if I'm lying on my back with legs raised.  I think it is probably something to do with the POTS syndrome.  Afterwards I didn't feel as good as after the yoga class and unfortunately I had a bit of running around to do in the car afterwards so couldn't go straight home and rest.  I knew by late afternoon that the Pilates class had been too much.  My heart rate raised and stayed up all of Friday, my digestive system also wasn't right.  Both of these now recognisable signs that I have overdone it.  On Friday I felt on the brink of a relapse, with that internal feeling of agitation in my system.  By Saturday I had recovered, heart rate back down again and everythingthing feeling much better again.
Interestingly, this week I have also been under some emotional stress and my body seems to be coping well with that too.  All very encouraging.  Anyway, this week I'll be back to the yoga class.  I know now that I'm not quite ready for the Pilates.  It is great though that I got through the whole of the class this week especially when I think back to my attempts to do a Chi gong class at the start of this year and how badly that went.  A noticeable step forwards.
2/10/12 brain fog today.  

Perrin Technique, a review so far

These last few days I have had a little peak at normality, a remembering of how things used to be and a glimpse of what a fully recovered life might be.
To celebrate a friends 50th birthday we went to a local water park.  Here's what I DIDN'T do...
I didn't drink alcohol or eat chocolate, I didn't camp as I knew the cold and lack of sleep would not be good for me.  I didn't stand up on our raft as it was being rocked and increase my chance of going in the lake and I didn't run and jump off the end of the pier like the others, but...here's what I did do...
I got in a two man Canadian canoe and paddled for between 30 and 45 minutes around the lake.  Then after lunch I helped build a raft and launch it.  I sat on the raft as it was paddled in a race out around a small island and back again.  About a third of the way my competitive nature took over and I had to have a go with the paddle (some of my team mates were just not doing the business).  I paddled for about a third of the way and then stopped when I knew I had done enough.  I sat around the campfire with friends until 9.30pm and then went home to my warm comfy bed for a decent nights sleep.  On Sunday morning we drove back out to the lake for breakfast and then helped with packing up tents in the rain before setting off home.
Now, when I woke on Sunday morning, I didn't feel brilliant and thought I should probably spend the day quietly and not go back to the lake, but, by the time I had taken a shower and had some food and thought about what I had done the day before I felt much better and did want to go back put to join the party.  I did have to go to bed for two and a half hours as soon as we got back on Sunday lunch time, but felt fine when I got up.
At no point over the weekend did I feel ill and at no point during the activities did my body do that thing where it just turns so heavy that I can't take another step forward.
This morning when I got up it was as if I was looking at the house with new eyes.  I could see lots of jobs that needed doing and that I wanted to do.  Things that in the past were just too much of a strain on energy.
The only thing I can put all this down to is The Perrin Technique.  Nothing else in my routine has changed.  I started back in April and the first few months were hard.  I did feel worse after each treatment.  I still feel bad after each treatment, but my recovery from that has got faster and faster and recently the effects have worn off by the time I get up the following day.  Since mid summer though my activity levels have just gradually increased and of course I have been able to stop my heart medication.  It is difficult not to be evangelical about something which has made such a positive change in me.  I'm not back to where I was before all this started.  In terms of lifestyle I don't want to be.  That's probably what put me in this position in the first place, but energy wise, I would like to be and I can see some light at the end of what has been a long dark tunnel now.  I can't remember when I last cried, but if I were to cry now it wouldn't be those horrible sorry for myself tears for what me and my family have lost, but happy tears for the positive changes that have and are happening.

Co enzyme Q 10 and sleep

Normal service resumes.  Since last Wednesday my energy levels have been depleted.  This has tied in with my monthly cycle.  When I was really bad, Ant always said that things got worse during my monthly menstural cycle.  I guess when your feeling really bad you just don't notice the difference, you just carry on feeling rotten, but now I am generally feeling much better I definitely noticed the effect it had on my body.  Anyway that all passed by this Wednesday morning and my energy levels recovered quickly.  So much so that by yesterday I felt able to dig three holes for rhubarb plants I was kindly given, then I harvested blackberries, raspberries and tomatoes.  I went on to iron 6 of Ant's shirts.  Bare in mind that not so long ago any one of those activities would have made me feel bad and finished me off for the day.  Then...I pushed a big arm chair out of the front door and one of the kids helped me load it into the boot of the car.  I drove it to the dump and helped unload it there, then, I drove to a furniture shop and helped manoeuvre another chair from the first floor through a rather cluttered shop and out into the boot of my car.  Then I drove home.  I didn't do anything else for the rest of the evening, it felt like I might have overdone it, I was sat holding my iPod and my arms were shaking like the muscles were over stretched.  So, I had a quiet evening, Ant did all the running around with the children and this morning I feel fine.  Of course I may still have a delayed effect from all that activity, but right now I feel good and amazed.
Two to three weeks ago my sleep deteriorated.  I was waking more frequently and waking very early, between half four and half five and not being able to go back to sleep.  Yesterday I was reading an article in Autumns InterAction magazine about coenzyme Q10.  This is a supplement I was recommended by Dr Myhill.  I currently take 100 mg a day.  Co Q 10 is vital for energy production.  It is normally found in the mitochondria, the part of the cell responsible for producing energy.  The lady in the article commented on how when she stopped taking Co Q 10 she noticed how her sleep had deteriorated.  It suddenly struck a chord with me that the week my sleep was so bad was the week I had run out of Co Q10.   I didn't re-order it straight away as I was waiting for some of my other supplements to run out so I could combine postage.  As soon as I started taking it again my sleep improved almost straight away.  It's an interesting observation, but unfortunately probably illustrates that my body still needs this supplement.  Maybe I should try stopping some of the other supplements and seeing if there is any effect.
I'm really enjoying my 50 minute yoga seasons at the therapy centre .  This week I was even contemplating whether I might manage a "normal" yoga class, but I know I am inclined to try and rush these things.
Had a Perrin appointment yesterday afternoon.  My practitioner seems very pleased with how things are going.  In theory I should be able to start having my appointments less frequently really, but I don't want to risk slowing progress.  I'm going to have 10 days between appointments instead of weekly for a while.
The session wiped me out as usual and I spent the afternoon on the sofa, struggled to eat dinner and went to bed at 7pm.

Tired thighs and meditation

Back on the roller coaster today again then.  Yesterday I was on such a high, today my body is in charge.
 I Put the bikes in the car and took DS1 to a local country park for a ride.  As soon as I got on the bike and tried to pedal my legs just lost any energy they had, they felt so weak.  The slightest pressure exerted on the pedals just made my thighs scream.  As we'd made the effort to drive there and unload the bikes I persevered on a mainly flat circuit around the park.  After a suitable distance I managed to distract him with yummy Marshfield Farm ice creams (worth the previous 10 minutes torture) then we cycled back to the car and loaded up again.  He must think I'm such a lightweight.  Tomorrow its the weekend and his Dad is going to take him on a proper big ride.
When we got back to the house I didn't have the energy to unload the bikes and headed for a pack of oven chips and the closest chair.  I could tell I was going down hill because my patience desserts me and I snap at everyone.
This evening I had planned to go to a meditation session with DD1, but my thighs were just not strong enough to drive me there.  Kindly, Ant said he would deliver and collect us. It must have been obvious to him that an hour and a half meditation session might be beneficial!

It was a very relaxing session and I'm hoping it's going to help my sleep tonight.