Sunday, 30 December 2012

ME and the everyday balancing act

Haven't posted for a while.  I've been pretty busy "doing" Christmas.  It went well although it was a balancing act that needed good managing and I think I managed it pretty well.  I did have to cancel three social events in the last ten days before Christmas Day.  These were things I thought I would manage but when it came to it were just too much.  I did still fit in quite a lot of social occasions in those lead up weeks and they went well.  I was conscious not to stay at any of them too late and that definitely helped.
I have traditionally visited the Christmas sales every year on the 27th December with friends and family   members.  Over the last 4 years I have done this in varying states of illness/recovery.  The first couple of years involved me doing very little shopping and much sitting in cafes and restaurants. This year however I ploughed up and down the pavements of Bath carrying several heavy shopping bags.  Earlier this year my symptoms would have stopped me in my tracks, forcing me to stop and rest, but not so now,my body did everything I asked of it.  I did feel it for the following two days but even so, it is a sign of how much stronger I am now.
The other thing I noticed after having shopped hard for the day was that I had a better nights sleep that night.  I had had a bit of physical exercise.  The problem is, it's fine line between doing enough to get a good nights sleep and doing too much, and it would seem the boundary between the two can vary   day by day so it's tricky to judge.  Today I have walked one and a half miles.
As the New Year approaches I have been thinking about resolutions.  I like New Years resolutions as I think they help to focus the mind.  This coming year I would like to read more, play my bassoon more and raise some money for an ME charity.

Tuesday, 11 December 2012

Perrin Technique spots

A mixed time again this week.  I Felt good on Friday and then really rough on Saturday and Sunday, not quite right yesterday and today I feel fine again.  At the weekend my rough feeling felt pre-menstrual, but then nothing happenned.  I had had a huge amount of mental activity over Thursday and Friday and it's always easy to underestimate the toll this takes.  I have started taking more detailed info on my activity levels, which I hope will be useful to look back on.
Since my last Perrin appointment I have had some spots.  I seem to get two different types of spots which I associate with the treatment.  The first sort are more just blemishes, red marks on my skin, these tend to be in two places; just below my cheekbones in a line across my face and on my chest.  The second sort are more like normal spots, but they are different to normal spots in that they seem much deeper and very rarely come to a head.  I get these spots on or just to the side of my nose.  I'm sure it is the daily massages that are encouraging them.  Now I am more active one of the problems I am finding is that it is easy to forget my midday self treatment because I am so busy.  I need to set some reminders on my iPod and phone to make me stop and do it otherwise I get to 5pm and realise I have missed it.  I wonder if the spots will get less the more I recover.

Tuesday, 4 December 2012

Monitoring energy levels

It hasn't been a great week energy wise.  Last Monday was the worse day, but then I gradually improved during the week.  I always had the sense though that fatigue was just under the surface and any small exertion would bring it on.  On Thursday feeling somewhat better I went for a small bike ride down to the village but the minute I had to apply any real pressure to the pedals my thighs complained.  I was good for nothing when I got back.  On Saturday night I went to the pub to celebrate a friends birthday and very sensibly left at around 9.30pm and didn't go on to join the others in the curry house.  I came to the conclusion as the week went on that my body was busy fighting off some sort of bug this week.  It never did develop into a full blown cold but it has had an effect on my symptoms.
I rested all day Sunday knowing that Monday would be a big day out, and so it was.  I took a train to Bath and had a lovely day Christmas shopping with a girlfriend.  We pounded the streets for hours, stopping twice to refuel.  I felt good all day until about just after 3 o'clock when my thighs started to weaken.  Our pace had to slow, but we made it to the last two shops we wanted to visit and then onto the train.  I couldn't do anything else in the evening, but I had had a good day.
This morning I'm sat typing in bed.  My body is tired from yesterday's activity.  I woke at 5am which is so annoying.  it's annoying that the fatigue you feel with this condition doesn't translate into sleep.  How I would love to sleep from 9pm to 7am one night.  It's 7.53 and normally I would have been up for an hour and a half at least by now but today I am going to have to take it easy.  It makes me think that the whole Christmas period is going to be one of boom and bust for my energy levels which is not a sensible way to go forward, but at times unavoidable.  I think some of the features of Mickel Therapy will be useful over this busy period.  I need to put myself first, do what I want to do, be prepared to say no and go for it (also known as pushing through and not recommended by many).
I think I need to refocus on my levels of activity.  I found reading this article about exercise levels helpful:
Experiments with exercise
I am contemplating asking for a cheap heart rate monitor for Christmas. 
 I am a bit nervous about this asdon't want to get paranoid about what my heart rate is doing, but
equally I do think it might be a useful tool to monitoring the effect that different activities are having on me.

Tuesday, 27 November 2012

Pushing through

Not a good day today.  It's only 9.30 in the morning and I don't feel good.  Nauseous, weary, heavy in the head and legs.  Not really sure what's brought this on, I've had a few lateish nights (after 10pm) and done a lot of driving in the last four days, more than normal.
7pm now, Ant is home, has fed me and I've taken myself off to bed.  My legs feel so weak.  Had lots of important phone calls today as well as some ferrying of DS1, haven't really been able to sit back and relax.  Today was supposed to be my cleaning day, no way I could have done that.  This makes me a bit sad, I switched the cleaners to fortnightly because I thought I could manage in between, but only three weeks in I haven't managed.  Perhaps I'm not as strong as I thought I was.

Saturday, 24 November 2012

Bit of a mixed week this week.  After a good Cranial Osteopathy appointment on Friday, I felt rotten when I woke on Saturday.  Nauseous and tired.  I'm sure this was once again linked to my monthly cycle which just seems to exasperate my CFS symptoms.  I felt better by Monday and then had a good Perrin apppointment on Tuesday.  I came away from the appointment with two back exercises to do using my newly purchased back roller.
These new back exercises are now incorporated in my daily routine.

Had a lovely yoga class on Wednesday.  I am so close to trying a proper full blown yoga class, not sure what's stopping me really.  It's probably that I don't want to try and then find I can't do it, that I'm not ready for it yet.  It's all to do with state of mind.  At the moment my mind thinks my body is pretty strong (relatively - against where it has been), so I don't want to show it otherwise by doing something I'm not ready for.  At some point I am just going to have to try it and see.

On Thursday evening I took DD2 to the city to see a show.  It was a 45 minute drive away.  I didn't know the venue and when we got there I discovered that there was no seating and that we would be stood for the whole show.  This wouldn't have been so bad except that the start of the show was delayed by 1 hour 15 minutes due to the bad weather.  This delay meant that I stood for much longer than would have been the case, about three hours all told.  For about an hour of that time I was doing battle with an ape of a man who was pushing against me trying to create a space where there wasn't one, for his girlfriend to stand in.  I sat on an uncomfortable step for the final half hour of the show.  My legs were tired, my back ached and I still had the drive home to do.  We got home at 11.30pm where I promptly fell into bed.  I felt rough on Friday morning, but recovered as the day went on which was useful as I had another longish drive to do Friday afternoon.  These events still do have an effect on my body, but I'm sure there is no doubt that they do not make me feel as bad as they used to and that I recover from them much more quickly.

Friday, 16 November 2012

Cranial osteopathy

Had a great appointment with my cranial osteopath yesterday.  He said my system was the best he has seen it since I started going there over two years ago.  This is great news and made me feel really good about things.  I was feeling so good about it I didn't even drive straight home, I stopped to pick up some shopping and at a friends for a drink and chat on my way home.  Even when I got home I didn't collapse on the sofa for the rest of the day as I normally do after a treatment, I actually managed to cook dinner first and then took to the sofa!  The treatment definitely calmed my systems internal agitation again.

Wednesday, 14 November 2012

Energy to clean

Last week I asked the cleaners that had been coming to clean for me once a week if they would mind coming once a fortnight.  I wanted to see how I managed with trying to do the cleaning in the alternate weeks.
Tuesday is the day they would normally come so yesterday I set about the cleaning.  In the past cleaning is something that has eaten in to my precious energy VERY quickly.  A short burst of cleaning often left me with a horrible malaise and complete fatigue.  Yesterday I was hoping to clean my en suite bathroom, the family bathroom, the downstairs cloakroom and the kitchen.  I managed the three bathrooms in an hour and then I knew I needed a sit down and thought I would take a rest and tackle the kitchen later.  Once I sat down however I realised how much energy I had used and decided that the kitchen could wait another day and that I should be happy with what I had achieved that day.  This is the new sensible me talking.  So, I think it went pretty well.  I stopped just before I'd overdone it and I felt good about what I'd done.  The cleaners will be back again next week to mop up what I fail to do.  I've discovered I still don't like cleaning, but that's another issue!

Friday, 2 November 2012


Aaaagh!  This morning I woke at 3.20am and didn't go back to sleep.   I never sleep well the night after a Perrin treatment, but it's not normally that bad.  Yesterday morning it was 4.15am. I laid there for a while and then got up at 5.30am. This morning I stayed in bed willing myself to go back to sleep, but it didn't happen.  I can't understand why my sleep should be deteriorating when my general health is improving?
Recovery from my latest Perrin appointment on Tuesday was good, best ever actually.  I'm now moving to   appointments every three weeks which will save a bit of money, but I'm nervous about doing - I want to keep the pressure up on my body.
Yesterday I took the kids swimming.  There are several good things about this; firstly, I organised the trip on Monday and told the children we would be going to the pool on Thursday and we did!  This is called planning, something I haven't been able to do for a long time.  Two things have changed to enable me to do this 1) I am feeling physically stronger a great deal of the time and 2) as a result of number 1) some sort of mental switch has happenned in my head and I am looking forward rather than just working to get through each individual day.
The second good thing was after saying on Monday that we would go swimming on Thursday we actually did.  I was feeling well enough to go through the hassle of driving there and back, changing rooms, showers and getting cold in the pool whilst keeping a 6 year old occupied and safe.  To someone with normal energy levels this probably doesn't sound like a big deal, but I haven't taken my son swimming on my own in over three years.  If I have been in the pool with him in that time I always have Ant or a big sis there so that when I get cold, which happens pretty quickly I can get out and leave the others in the pool.  Struggling to regulate body temperature is a common symptom of ME and some thing I have previously struggled with.
On top of all the above I also swam 125 metres - one lot of 75 and one lot of 50.  I was going to do one more 25, but wisely stopped myself.  My biceps and triceps are so weak, it is very noticeable when trying to swim.  I also climbed 144 steps to the tops of different slides and got pretty cold, but I spent the whole hour in the pool.
Afterwards my thighs were so heavy, and as if they were full of lactic acid, but other than that I felt fine.  I also slept really well 10pm to 4am with no disruption.  Then I woke again at 5am and couldn't go back to sleep.  This afternoon I was tired.  I think all these early mornings are catching up with me and I went off for a 45 minute sleep this afternoon as I am going out this evening and might be a little late back.  I will also be driving forty five minutes each way this evening.
The swimming expedition could still hit me tomorrow, but I'm really starting to think that it might not.

Sunday, 28 October 2012

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.

Monday, 22 October 2012

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 : )

Saturday, 6 October 2012


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.

Tuesday, 2 October 2012


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.  

Monday, 24 September 2012

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,'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.

Saturday, 22 September 2012

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.

Friday, 7 September 2012

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.

Thursday, 6 September 2012

Perrin Technique Recovery?

Well, no night shakes or funny turn in the night.  This is brilliant.  I can't believe the level of activity I did yesterday.  Could this be my recovery story?
I mentioned to Ant that I was going to do the Pilates class at the therapy centre today and he has suggested that I shouldn't .  He thinks I should have a rest day, yet again the voice of sense.  If I am turning a significant corner, he thinks the corner should be turned slowly.  I will heed this advice.
It would be nice to sort my sleep out.  I woke at 4.08am this morning and generally wake between 4.30 and 5.30am, it's too early.
Feeling like an excited child.

Wednesday, 5 September 2012

Yoga and Thai massage combined

So today was my second yoga session at the therapy centre and it was very enjoyable.  There were only 4 of us in the class so we had a very relaxing session.  In 50 minutes of the class we only did 5 poses, but we stayed in those relaxing poses for a long time and whilst we were in each of the poses the teacher came around and gave us all Thai massage on different parts of our body
The only bit I didn't like was the massage on my head.  It felt uncomfortable almost painful and my body tensed.  After the session I didn't get the normal spaced out feeling I usually get I actually felt really energised and invigorated.  It didn't last long, but that feeling of energy and alertness was fantastic while it lasted.  It felt like I might be normal, like the old me.
If I don't have any sort of reaction overnight I will be very happy as I have done several things today that might have in the past given me night time shakes - a yoga class, massage, being too hot in the sun, going out on a bike ride with DS1 this afternoon even though I was really probably better off resting, getting too cold on my way back from the bike ride and just the combination of all those things.
I am monitoring all my activity by day at the moment, walking, cycling and driving  so that I can have real facts rather than just thinking that I'm doing more and more.  Things are definitely looking up.  Providing I have no bad effects overnight and feel good in the morning I'm going to try the Pilates class at the therapy centre tomorrow.

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.

Tuesday, 31 July 2012

Olympic Trip

Yesterday at the Olympic park seems to have whizzed by in a flash.  It was a long day but all seemed a bit rushed.  Travel was good, no problems.  We saw 2 games of men's handball, my favourite being Spain vs Serbia which was very close all the way through.  There was a lot of walking involved in the whole day and in general I think I held out pretty well, just some pains in my right thigh and heavy legs.
We had a bit of a rush to get back to Paddington station at the end of the day and the girls do this wonderful thing now when they can see I am flagging where they each loop an arm through one of mine and pull me along, it really helps.  
When I woke up on Monday I felt like I'd been run over by a bus, my leg and back muscles ached. Part of the problem now is deconditioning, my legs aren't used to walking that sort of distance.  
I needed a day doing nothing and that's what we did.  The kids and I spent the day on the sofa watching the Olympics on television.
Today will be telling as this is the day any delayed fatigue from Sunday will hit me if it's going to.  If I don't get any delayed fatigue today I will definitely put that down to my Perrin treatments.

Sunday, 29 July 2012

Perrin technique 10th treatment

I,m struggling to know what to write about my recovery from treatment this week. Immediate recovery from this weeks treatment on Tuesday seemed good again, faster than last week. Then I found I had to rest more during the week. I've done more driving this week than normal taking and collecting DS1 from summer school, so that could have taken it's toll. I've been to bed four afternoons out of five this week which is more than normal. DS1 being at summer school has meant that I have been able to do this and it hasn't been a problem. It is obviously harder (though not impossible) to do when he is at home. Today I have been mostly horizontal. It was a late night last night, staying up to watch the Olympic opening ceremony. I stayed in bed until 5 pm trying to recover from last night, but also conserving all my energy for a big day out at the Olympic park tomorrow. I am very nervous about the amount of walking I might have to do tomorrow to and from the tube stations and around the Olympic park. Fingers crossed, the excitement will see me through. Reading stories to DS1 tonight I noticed some suspicious looking spots on his right arm. I'm hoping it might be some kind of heat rash and not anything contagious that might prevent him travelling to London tomorrow. Fortunately he was in good spirits and seems well so hopefully it won't be a problem. Due to her holidays and mine, I,ve now got a three week break with no trips to my therapist. It's a shame as I want to keep going with it, but she thinks it will be a good opportunity to see how things are going. I will continue with my daily self treatments. On Monday I'm going to try introducing a bit of yoga again to see how my body copes.

Sunday, 22 July 2012

Quicker Recovery

Happy to report that I seem to have recovered from this week's Perrin treatment a little more quickly than previously. My sleep was badly disrupted for two nights and Wednesday I felt rough. I was due to go and watch DD1 in a concert Wednesday evening, but didn't have the energy to drive there. Ant kindly said that he would take us and pick us up and all i had to do was sit there, so I did get to see her play. Pains in my left knee and thigh again in the days following the treatment and also a rash down from the bridge of my nose and under my left eye. Yesterday I was quite active. I walked down to the village. It's the first time i've done that for quite some time - maybe a couple of months and I was nervous about it, but I was feeling good and had nothing else planned for the day so if it wiped me out it wouldn't matter. It went pretty well, pace was very slow, but I made it without having to sit and rest. I even did a small bit of weeding, harvested some gooseberries and a game of hide and seek afterwards, but then by mid morning I had reached my limit and had to sit down. I rested for the rest of the day until we went out for a barbque dinner in the evening. I feel positive that recovery from this weeks treatment has definitely been easier than previous weeks.

Wednesday, 18 July 2012

Perrin technique - 9th treatment

So, I moved my treatment from a Friday to Tuesday as we had plans for the weekend and the last two weekends I have had to go to bed both days following treatment. The weekend went relatively well considering I had only 3 and a half hours sleep on Friday night. On Saturday morning I was upset, knowing that I could not stay and have another night like the last for that risked a big relapse. I was frustrated that yet again I was having to opt out of something fun with friends, but I did do the sensible thing and on Saturday night I drove home so that I could sleep somewhere quiet and not be disturbed. My head hit the pillow at midnight and I slept through to 8am Sunday morning before driving back to rejoin my friends. On Monday I was fatigued and didn't make it out to a monthly musical ensemble I play with. I feel like I am letting people down by not turning up, but I am getting better at putting my own needs first. The treatment this week seemed a little more gentle than some of the previous. Again, not so much work on the thoracic area, normal effleurage, cranial work and some time on my left ribcage around the area of my fall. Afterwards I always seem to feel the same, a period of cold shivery ness which passes quickly then I'm fine for about an hour and then fatigue sets in and also a sense of disorientation as if I'm not quite all with it, then the next day nausea and fatigue. Today I made sure I did everything I needed to do early, drove DD1 to singing lesson, school work with DS1 knowing that I would probably run out of energy and sure enough I was asleep by 2pm for an hour. I am waiting now for a time when the fatigue which, since i started this treatment always sits just under the surface, lessens and I actually start to feel better as a result of the treatment and not worse.

Sunday, 8 July 2012

Perrin technique - the after effects

Today I'm feeling a bit more human and some energy has returned.  I spent Friday afternoon on the sofa with the tennis and went to bed at 7.30pm feeling mentally and physically "vacant".  On Saturday when I woke I had a headache and didn't feel too good, but I did get up and decided to go with Ant to the supermarket.  It started well, but just a short time into the shopping I felt bad, my legs just went so weak I thought they weren't going to support me, I had a headache, bad nausea and that horrible feeling of malaise.  I went back to the car to lye down whilst Ant finished the shopping.  When we got home I went straight to bed and just laid there until 4pm, just feeling very, very weak, like it was an effort to move any limb.  I had pains in my thigh muscles.  Strangely as my therapist did less physical work on my spine on Friday and more cranial work, the area between my shoulder blades has been more uncomfortable this week.
When I got up I felt a little better and then just continued to improve as the evening went on, which was fortunate as we were going out to dinner.  We went out early at 7pm and were back by 11.30pm - very wise as it would have been easy to have stayed out much longer as we were having such a nice time with friends.
This morning I feel sooo much better, I've cooked fresh waffles, had a FIR sauna and done a little ironing and although i'm starting to feel a little fatigued, it's manageable.  My brain fog has lifted and I feel so  much better than i did this time yesterday.  How can these changes be so marked and happen so quickly?  It often happens like this, it's like walking around in a suit of armour for a couple of days and then having it removed and feeling like the physical weight has been taken from your body and you can move more freely again.

Friday, 6 July 2012

Wiped out

Not sure what my therapist did at my Perrin appointment today, but I'm feeling really wiped out (in a sort of nice sort of way I think).  Fortunately the Andy Murry tennis game gave me the perfect excuse to spend the whole afternoon on the sofa.  Had to dip out of planned evening out, heading off to bed.  Will blog when I have more energy - tomorrow hopefully.

Monday, 2 July 2012

Being Positive about Perrin technique

So, I'm begining to think that the effects of Perrin technique on the body are cummulative.  I've had 5 or 6 treatment sessions now and have been feeling pretty much progressively worse.  From a Perrin perspective I think this has to be seen as a good thing, a positive thing, that changes are taking place in my body which is what you want.  When I went to my appointment on Friday my practitioner was pleased with my spots, said they were in the right place and all the cold sores and mouth ulcers were good signs too that changes are happening in my system.  The knock on effect of all these"positive" changes is  that I feel rubbish and had to go to bed Saturday afternoon and Sunday afternoon I went to bed at 4pm and didn't get up again.   My body was completly drained  - no energy, the idea of eating just seemed like too much effort.  I'm guessing it was largely a response to recent activity, theatre trip on Thursday, spontaneous bounce on life size inflatable Stonehenge on Friday, drive to watch the 13year old play football on Sunday morning.  The fatigue has been sitting just under the surface and is brought on by just the smallest exertion.  Today I feel fatigued and weak before I even do anything.  I can see how easy it would be to give up on the Perrin technique at this point.  It's just making you feel worse and it would be easy to step away from it.  BUT, I must persevere.  Reading other people's blogs about the treatment it seems that many don't start to feel any better until about week 14.  Sounds a long way away at the moment.
Yesterday I stopped taking betablockers completly.  This is a significant step, but I can't get excited about it at the moment because my heart rate is up.  I'm sure that my heart rate is only up due to my current fatigue which is what normally happens, but it's difficult not to think it might be related to not taking the medication.  I need to forget about it, because if i stress about it my heart rate will be up!
So, the fact that I'm feeling bad is a good thing, I need to be positive and keep telling myself this to get through this little tricky patch.

Tuesday, 26 June 2012

Yay spots!

Feels like a while since I've blogged.  Brain fog is still with me and that is probably why I haven't managed to update.  Problem is I forget so quickly if i don't write down how I'm feeling.
Felt very nauseous when i went to my last Perrin appointment on Friday.  Fatigue is just under control at present.  The minute I do anything slightly exerting I feel the fatigue in my muscles straight away.  Yesterday for the first time I attended a school sports day and didn't take part in the parents race.  Normally my competitive being would be out there, not just to take part, but aiming to win.  Yesterday I did seem to have some kind of comfortable acceptance that it wasn't going to happen.  Just a fleeting thought of I wonder if my son is questioning why I'm not getting up to take part.  He knows I can't run, but he doesn't really understand why.  Maybe it's time to have that conversation with him in a bit more detail.  Anywhoose, he never mentioned the parents race so he obviously wasn't bothered and neither was I.  This is a bit of a step forward for me mentally I feel.  I have been reading about acceptance a little lately, the fact that we can either try and plough on and pretend that nothing is wrong or we can embrace a new way of relating to ourselves and the world.  Acceptance is not about giving in or giving up, but about facing that thing which we fear, turning towards it and taking hold of it.  This gives a better understanding and then hopefully it is possible to see things with a clearer mind and respond in a better way.  Acceptance can be linked to positive change.
That said, I still have work to do in this area as my brain still thinks a lot of the time that my body can cope with more than it can.  This weekend I had the idea that I wanted to do a car boot sale in the village and get rid of some old toys and games that were hanging around.  I was sensible to the point of saying that I wouldn't make a decision about this until the morning of the sale and see how I was feeling then.  When Sunday morning came the weather was coldish and blustery, threatening showers.  I was still up for doing the car boot, but fortunately Ant was there on hand pointing out the reality.  Why would I put my body through three hours of standing out in the cold?  He is only too familiar with the effect this has on me  - hot or cold, these things just zap me and he is the one who has to deal with the consequences.  He very sensibly talked me out of it, me walking away mumbling something about how I thought it might be okay and knowing of course that he was right.  It's  a bit of a running battle between brain and body about what can be done.
  I'm going to take DD2 to my Perrin appointment this week so she can observe how to position the thoracic wedge.
Then once my therapist thinks my body can tolerate it I will take a wedge home and use it every day to help mobilise to top of my spine. I have never been so pleased about discovering a spot on my body as I was yesterday.  Every week when I go to my Perrin treatment my therapist asks if I have any new spots and I normally say no.  Yesterday I woke to three spots around the area where I do the lymphatic massage.  I think this is a good thing, a sign of toxins trying to leave the body.  I shall take great pleasure in telling her I have spots this week.

Monday, 18 June 2012

D-Ribose and ME / CFS / CFIDS

This is the third time I have sat to try and write this blog entry.  Concentration is not good at the moment, although I have been able to read some non-fiction books in short bursts.  I have offered to write a piece on meditation for a local magazine and I really want to do it, but I just don't seem able to set myself down to the task.  The very idea just seems overwhelming.  Thinking about it now as I write, I probably need to break the whole thing down into smaller chunks that seem more manageable such as just sitting down to do some planning one day, maybe prepare an introduction the next and so on. 
This week had been much easier than last.  My fatigue had been back under control again.  My latest Perrin appointment was 7 days ago and I've had been feeling pretty good, some stiffness between my shoulder blades, but most of the symptoms I had last week had subsided.  Unfortunately a late night on Friday and a busy day on Saturday took their toll and by Saturday teatime I was good for nothing.  Sunday continued in the same way, went off to bed in the afternoon, which I don't have to do very often these days.  Felt head achy, hayfevery and my sore throat returned.
Had a bad night's sleep last night, but this morning I do feel a bit revived.  I need to do something to help my brain fog though, I think I need to go back to list writing - I need an action list that I can prioritise as my brain is all over the place and I am jumping from one thing to the next in no particular order and probably achieving very little.  I shall set to work on this today.
On Saturday I had my first cup of caffeinated drink for nearly 3 years.  I have had another today.  One of my supplements D-Ribose is best absorbed when taken with caffeine, but because of my high heart rate I have been avoiding caffeine.  Now my heart rate seems to be more manageable I thought I would try it.  I take D-ribose 5 times a day but at the moment I am just having one cup of green tea in the morning with d-ribose and the other doses I just take with herbal or fruit drinks.  Here is some information about why d-ribose supplementation might help - article

Sunday, 10 June 2012

Perrin Technique - Bring it on

I don't really want to blog today as I fear it will read as a whingey list of irritating annoyances.  I know however that I will forget how I'm feeling if I don't document it.  It hasn't been a brilliant week energy wise, but it has been an enjoyable week in other ways.  Two days this week it has been really hard to get out of bed in the morning.  My body has just felt devoid of energy.  I did have a lie- in on those days, but mentally I don't want to be lying in bed, I want to be up, even if I'm doing very little.  When I'm feeling this sort of fatigue, it is my legs and my thighs in particular where I feel the weakness most.  If I'm lying in bed, then lifting my knees so the soles of my feet are flat on the bed is such an effort and the thought of getting up makes you not want to try.  The hardest bit is getting out of bed.  Once I'm up I know I can get mobile, but there is a balance to be had here, Dr Myhill says that the problem of pushing through this sort of fatigue is that it creates cell damage by free radicals, this is a bad thing, particularly if you have a low antioxidant status.
In the past months I have been feeling relatively well at base line activity levels, so as long as I haven't pushed myself physically, emotionally or mentally I have felt fine.  This week however I have been at base line activity levels and still had fatigue and not felt well.  This is the first time I've felt like this for any length of time for quite a while.  In addition to the fatigue, I have had an ulcerated tongue for 6 days now and the vagaries of a sore throat hanging around but not actually developing into anything.  Generally feeling run down.
Due to a fault of my own I have been without one of my supplements for a week now - VEGEPA.  I  normally take 4 of these a day.  Because it coincides with a drop in my energy levels I can't help but wonder if it is connected.  This thought makes me a bit sad as it makes me think that my body is just being artificially pumped up by all the supplements and if I stop taking them I'll be back where I started.  My current mindfulness reading tells me that this is just my mischievous monkey brain chattering negative thoughts at me.  The more positive view is that the way I've been feeling this week is just down to the Perrin Technique treatment and all the toxins that my body is now having to deal with being released into my system.  This is a good thing to that I say, "bring it on".  Really looking forward to Tuesdays appointment to see what my practitioner makes of it all.

Friday, 1 June 2012

Perrin technique and what a difference

What a difference a day makes.  A quick entry as it is late and I need to go to bed, but I want to jot down how I've been feeling before I forget.  Yesterday I was so high and so I was when I got up this morning.  I felt good and decided to have a sauna.  It was weird, normally I lie in my sauna bag for a good 25 minutes and during the last 5 minutes have a horrible feeling of clamminess and desperate need to sweat before it actually happens.  Today was a little different.  I got hot, but then I had a strange feeling of coolness again and then I got hot and then coolness again.  At first I began to wonder if the sauna was working properly, but then the thought occurred to me that my body might be trying (and succeeding to some extent) to cool itself.  Was my body trying to regulate itself perhaps?  I don't know if that was what was happening, it's what it felt like and that would indeed be a good thing.  Retrospectively though, it probably wasn't a good idea to sauna on a day I'm going for a Perrin treatment, I don't think I'll do that again.
Ant dropped me in the car to my appointment.  I was still feeling great and my physio could tell I was feeling good.  Each time I've gone (this was my fourth visit - third proper treatment) it has got a little more intensive and today she did an awful lot and worked for quite some time on the thoracic area of my spine, trying to mobilise it.  It all felt like one of those likable discomforts, it didn't feel very comfortable, but I wanted her to do it.  Anyway, I think my body went through it a bit on her table today.   I felt a little light headed walking home.  I iced the top of my spine when I got back and after about half an hour of being home fatigue set in, I felt sick and had a headache.  I sat and watched a Star Wars film with DS, forced down some lunch and by 2pm I had to go to bed.  What a drastic change from how I had left the house earlier in the morning.  I slept for an hour and a half and then meditated and just led there for another hour and a half.  I got up at 5pm feeling somewhat better.  It made me think that maybe morning appointments  aren't a good idea as they might wipe out the rest of the day.  So, at least today I do feel that the treatment has had some effect on my body.  Think I might be a bit achy tomorrow.

Thursday, 31 May 2012

A milestone

This afternoon I have been to the hospital to see my heart doctor.  I like him alot.  He isn't patronising and I just like his approach.  He says he doesn't know much about the connection between ME / CFS and Postural Orthostatic Tachycardia Syndrome, but he has been prepared to find out and has obviously enquired around the subject.  He takes an interest in the information that I've had from Dr Myhill and from the CFS centre at the Hospital for rheumatic diseases in Bath.  I get the sense that he's one of those people that just goes the extra mile.  Anyway today I have come away from the hospital feeling very emotional - I managed to hold it together until i got outside the building and then felt myself welling up.  This afternoon I was told I could try and come off the heart medication, stop taking the beta blockers.  Why does this make me feel emotional?  Because, when I was really poorly, right back in the early days of all this, I said to myself that I would know if I was recovered when I could come off the beta blockers and my heart was back to normal.  Now, clearly I am not yet fully recovered, nor would the recent tilt table test results say that my heart is reacting normally, BUT this is a big milestone.  I have been taking these tablets for two and a half years and there have been times when I've thought I would just have to keep on taking them.  To be able to stop is just a momentous sign to me of how far I have come and I feel emotional again just typing this.  I am getting better and I am getting stronger.  It easy to forget this and just get bogged down in the day to day - this week hadn't been particularly good (the fatigue finally subsided yesterday afternoon), but in the grand scale of things the general direction is definitely up.
He went on to say that if it doesn't work out coming off the beta blockers then there are other treatments he could try.  One of them is the Ivabradine which we have already discussed, but he also told me about a doctor in Bristol who is having good success.   He uses a drug which restricts blood flow to the stomach, this process leaves more of your body's blood free to circulate in the rest of your body and this really helps.  So, he basically said there are other options he can look at.
Although the ECG I had done at the hospital today was a bit up (always seems to be when i have it done there), the 24 hour ECG I had done earlier in the month had been good, a low of 69 bpm, a high of 117 bpm and an average of 79 bpm.  This sounds pretty normal to me.  Obviously I did very little that day as I wanted it to be low and I did have the beta blockers in my system, but even so, really pleased with that.  Once I'm off the beta blocker the doctor did say that if I find I'm having a bad day I could just take one as and when I feel I need to, but I'm hoping I won't need to.
He also said he was going to write to a Gastro colleague of his to ask about pancreatic efficiency testing.  I am doing my best to put all the right things inside my body, both through nutrition and supplements, it would be really useful to know how much of any of these are actually being absorbed by my system.
All in all I am feeling really happy about today.  Ant said that he was really pleased for me as I have worked really hard to get myself to this point and it is paying off.  He's right, I have, with his support, the last almost three years have all been about trying to get better, doctors appointments, hospital appointments, blood testing, other testing, drugs, nutrition, supplements, pacing, resting, reading around the subject, positive thinking, meditation, mindfulness, cognitive behavioural therapy, saunaing, cranial osteopathy, mickel therapy, perrin technique and just generally managing the situation.  I am going to carry on with more of the same and hope that my recovery continues to go from strength to strength.  Now I have made it to this milestone what will it be next.  How will I know when I've taken the next big step forward I wonder.
So, tomorrow I will reduce my medication again and take it like that for the next month and then on the 1st July I shall stop taking it all together.  Yipee!

Wednesday, 30 May 2012

Needing a boost

Well, I'm not sure how I'm doing now.  When I went to my Perrin appointment on Friday I felt I was teetering on the edge of a crash.  On Sunday I took the children to the local swimming pool -  a bad move as later that day I had to drive for over an hour to collect Ant from the airport.   So, definitely over did it Sunday.  Low and behold Tuesday - 2 days later -  fatigue set in, in fact it probably started Monday, I was in bed by 8pm and last night I only made it until 7.30pm.  I almost fell asleep in the afternoon sat in the garden except that the noise of my book falling out of my hand and clattering on the patio below woke me.  After the swimming pool trip on Sunday I had to go to bed for nearly 2 hours in the afternoon before my drive.  So, my fatigue is definitely worse at the moment.  I awoke unrefreshed this morning and my limbs, particularly my thighs, are just so heavy.  I've just delivered my DS 250 metres down the road and it was so much effort, especially on a slight incline.  The question is, is this a result of the Perrin treatment or is it just because I have overdone it?
No nausea or headaches after my treatment on Friday, but I have had tenderness under my collar bones during massage.  My sleep has been a bit weird since starting the treatment.  It feels like it has been fairly deep sleep, but then I wake really early, 4.37am this morning.  Then I doze in a not quite asleep sort of way until about 5.30 - 5.45am then I start meditating, so, this has been quite good for my meditation practise.
On Monday I went to see my Cranial Osteopath whom I haven't seen for a couple of months.  He was generally pretty pleased, said my body had responded well to the treatment, but that he could tell it was tired and that I was showing signs of selenium deficiency.  I am already taking 260mcg of selenium a day so I am going to speak to Dr Myhill and see if I can get my level checked.  It could be of course that I'm just not absorbing any of the stuff that I'm putting in in the way of supplements.  No way of telling really.  His treatment really calmed the inner agitation that was going on in my system and I could have fallen asleep there and then on his table.  To finish with he did the weird thing that he does just under my left ribs which makes my whole diaphragm harden and tense, it makes me feel very emotional when this happens, tearful, and then I get this strange rippling sensation as it releases.  The closest I can describe this sensation of tensing to is the uncontrollable urge to push down that you get when delivering a baby, it's the same sort of sensation.
So at the moment my days seem to be the typical rollercoaster pattern that I am very familiar with, really well last week and physically low this week.  Going to the theatre tonight, so need to take it easy today.

Thursday, 24 May 2012

Post Exertional Malaise and research

A strange week really, my limbs have felt heavy all week.  The one minute marching that I have to do 4 times a day as part of my Perrin treatment feels like hard going.  However, despite this I "feel" well.  I feel good.  On Monday I actually did a bit of digging in the garden.  I helped a friend move a rhubarb plant (although not really sure how much help I was) and then later I dug enough to cover two short rows of potatoes in soil.  I know for sure that an attempt at this sort of exercise last Spring would have induced an instant "crash".  By crash I mean an immediate onset of symptoms making you have to stop what you are doing.  For me this would take the form of a feeling of increased gravity, like the sky was pushing down on you.  My muscles would feel weak, especially my thighs, like it's just too much to support the weight of my body.  A general feeling of malaise comes over you and you feel bad. It is often too much of an effort to even speak or eat when this happens.  I have come across an interesting article about Post Exertional Malaise here
There was also an interesting piece of research which was touched on in this months Inter Action magazine.    The European Journal of Clinical Investigation showed that compared to healthy people ME patients have a profound abnormality in bioenergetic function when exercising.  There is an increase in acidosis within the muscle and an almost four fold prolongation of the time taken for the muscle acid to return to normal compared to normal controls.  The total post exercise acid exposure was approximately 50-fold higher in ME patients when exercising to the same degree as normal controls.  Of course they go on to say that why this should be they really don't know, but the process of returning acid levels to normal is  regulated by the autonomic nervous system so it might be related to the autonomic dysfunction found frequently in ME patients or a reduction in vascular run off may also be a possibility. 
I sort of feel as if the scientists are getting closer to finding out more about the causes.  Three new bits of research have just been funded by Action for ME, one of those is about muscle dysfunction, one about sleep and one about cognitive impairment pre and post exertional malaise.  It's just great that this research is being done, but of course it is all funded by donation and charity work.  I am inspired to try and raise some money.
So, going back to my digging, not only did I not crash during digging, but neither did I have any delayed fatigue response - which I've been waiting for all week.  This is good news and I can't help linking it to the Perrin treatment as this is the only thing that has changed in my routine.  I really look forward to my treatments, it's like I'm just filling time for the rest of the week until it's time to go again - not a very mindful way of living!  It's just me being my normal impatient self and wanting things to happen NOW.  Fortunately I have Ant at my side to offer his calm measured approach whenever I get too carried away.

Sunday, 20 May 2012

Perrin Tecnique - second treatment

Had my second treatment on Friday morning.  It wiped me out a bit in the afternoon, I could really have gone to bed, but didn't as the two youngest children were at home, so put on a Star Wars movie instead and sat with my little one on the sofa.  On Saturday morning I was nauseous from pretty early on and it lasted most of the morning.  By 6pm I had a bad headache (I don't often get headaches) which lasted all evening.  Both of these I am taking to be good signs that the treatments are having an effect on my system.  A bit nauseous this morning (Sunday) but not as much, it reminds me of being pregnant.  Sleep has been much better these past two nights which is great.  I've been sleeping for 3 hours at a time rather than the 1 and a half hours at a time I was managing last week.
I even risked taking a FIR sauna this morning.  I haven't been saunaing since I started the Perrin treatment because I didn't want to mess it up.  I've been fine and starting perspiring after only 27 minutes at 43 degrees which is good for me.
I've stepped up my meditating too.  Feeling really positive about things at the moment.

Friday, 18 May 2012

Perrin Technique and sleep

I've been awake since 4.50am this morning.  The Perrin treatment is definitely affecting my sleep.  I am waking 3 or 4 times every night and waking very early.  The good thing is that when I wake at night I am falling back to sleep quickly and not lying awake for hours as I used to.  This morning I used the time to do a 40 minute meditation to set me up for the day.  I was very tetchy yesterday with everyone.  I am not a tetchy person by nature so I can always use it as a good sign that my body is fatigued.  Everyone is used to it and I hope take no notice of me when I'm like that.  The current bout is a knock on from a trip I took on Wednesday when I drove for one and a quarter hours to one of our local universities with my daughter and some friends.  When we got there the department we were visiting was on the sixth floor.  I had no knowledge of this when we followed the lecturer up the stairs from the second floor.  Four floors later my body is letting me know exactly what it thinks about stairs.  I don't know why I cant do stairs, I think it is something to do with the Postural orthostatic tachycardia syndrome, but I don't know why stairs should effect me so much more than just standing or walking.  Anyway I forgot about it, it was exciting to see the kids in this environment.  I left them there and went back downstairs. Later that morning I went on a tour of the university department and found myself traipsing up the four flights of stairs again.  Foolishly I didn't do anything about it, because I didn't know where we were going I just followed the crowd.  After this my heart rate was right up and stayed there for several hours.  I did nothing for the afternoon and then drove home which I managed pretty well, but once back I was good for nothing.  Ant came in after I'd been sat for about an hour and took my boots off for me, it was just too much effort to do it myself.
The interesting thing about how my body reacted at the university is that normally after that sort of level of activity I would have a horrible feeling of malaise and just feel rotten, but although my heart rate was right up for several hours the horrible feeling of malaise did not come with it.  Could this be due to the Perrin Technique?  I don't know, but it's the only thing that is different in my routine at the moment.

Saturday, 12 May 2012

The Morning After

I woke at 5.08am this morning, a little early so I led there for a while and got up at about 6.45am.  I felt really good.  Ant can always tell when I'm feeling good as I leap enthusiastically out of bed with "things to do".  And so I did this morning.
My energy levels were pretty good all day, but there were some effects from yesterdays Perrin technique treatment.  My sinuses were really blocked when I woke, but cleared after my first morning treatment and then for a couple of hours I could feel fluid coming down the back of my throat.  After my second self treatment of the day I had a strong bout of nausea.  Nausea is a common side effect and is due to the fact that the liver is having to deal with all the toxins being released into your system.  Perrin recommends Milk Thistle to help combat this, but I'm already taking so many supplements I don't really want to ad any more to the list, instead I am just trying to drink more water.  I had two other bouts of nausea during the day, it just seems to come in waves.  The base of my spine aches due to the spinal twists that I'm doing 4 times a day.  So, these things are all manageable particularly as my energy level has been good today.
I went to see a talk on Mindfulness yesterday, it came as a timely reminder to keep working on my  meditation practise, there are so many benefits.  The speaker Professor Mark Williams touched on the inability of humans to cut off their "fight or flight" response, this resonates with me as my body often feels like it is on full alert.  Even when I think I am relaxed inside my body still feels like it's going at full pelt.  I would like to mentally be able to switch off the fight or flight response.  Mickel therapy aims to do exactly that - to calm down the hypothalamus.  I think Mark Williams is suggesting that mindfulness might help with this.
So, it's 9.39pm now and considering I've been up so long I should probably be feeling tired, but I'm not.  Mustn't push it.

Friday, 11 May 2012

Perrin technique first treatment

Today has been a good day.  I had my first proper Perrin technique treatment this morning.  It went well, I didn't burst into tears the minute I sat down like my previous visit, so that was a good start. 
The treatment took about 50 minutes and consisted of some massage, some sacro-cranial work and some manipulation of the thoracic area of my spine.  We talked through how my self treatment had been going and what responses I'd had to the self treatment.  Raymond Perrin has devised a chart which gives some idea of the length of treatment that might be required on average.  This is based on a score you are given after the first diagnostic appointment.  So, my score is 6 - which is pretty good.  1 is extreme symptoms and completely bed ridden and 10 is normal.  So I'm heading up towards the top of that chart.  Anyway Perrin's chart says if you score 6 the prognosis for length of treatment is 8 to 12 months.  That sounds good to me.  Obviously it doesn't always work for everyone and there are often other factors  that will effect this, but I'm going to follow the treatment to the book and hope everything else is in place.
By the end of today's treatment I was given more exercises to do and increase the number of times I'm doing them through the day, so now I have to do the self treatment 4 times a day.  My Perrin practitioner commented on my cranial pulse in a way that makes me think I could probably do with an appointment with my cranial osteopath who I haven't seen for a while, so I need to organise that.
This evening my back is aching which I guess is only to be expected.  Fatigue set in at around 6pm, but not too bad and I have recovered a little now.
I am going to go to bed and read my new book on mindfulness.
Interested to see how I feel in the morning.

Monday, 30 April 2012

Perrin technique - 10 days on

So, I have been continuing with my daily massage techniques since my first treatment last Friday.  All has been going well.  It does feel a bit strange after the head massages,  but it soon passes.  From Friday to Tuesday the area that you massage to, just below the clavicle bones, was really tender.  On Wednesday evening fatigue set in and lasted all through Thursday, but was better by Friday.  On Sunday I had my first bout of nausea.  The only other reactions have been occasional headaches around the eyes - on the brow.  I think I was expecting more of a physical reaction.
What I have noticed is the sense of optimism that comes with starting a new treatment, a sense of hope and a positive feeling that you are actually doing something to try and overcome this.  Looking back over the previous month I think I was in quite a low place mentally over the situation, but now I am lifted again.
I have opted out of a treatment this week as I have a 24 hour ECG starting on Thursday and I don't want to do anything that might give me a reaction and show up on the ECG, so I will be booking my next treatment for next week.
On Saturday I had a lovely day out with some girl friends.  It was quite a long day and in the afternoon I swam 4 lengths of a hotel pool.   I haven't done any swimming for ages and I await to see if I have any reaction to it.  If I'm going to it will probably happen today or tomorrow, but i took it really easily so hopefully it will be fine.  One thing I did notice was how weak my arms muscles are these days.  They were aching after just these few lengths.  I used to plough up and down the local pool.  When I can exercise again, I'm going to have to spend some time building my muscles up again.  I purposefully stayed away from extreme changes in temperature, like the sauna and steam room as I know my body doesn't cope well with them and it often stimulates a reaction.  It was a good day and I was sleepy tired by the end of it which is always a nice feeling.  I definitely think that "Girls Day Out" therapy is very good for me : )

Sunday, 22 April 2012

Rollercoaster Day

I had been waiting enthusiastically all morning for my first Perrin technique appointment which was at 12.30pm yesterday, then, after  one thing and another I didn't leave the house to walk there until 12.20pm - not long enough to walk there, not at my current pace.  So, of course I ended up rushing and arrived feeling light headed, nauseous and with my heart racing.  She wasn't ready for me so I sat in the waiting room feeling rotten and upset at how such a short walk at a decent pace had made me feel.
"So" she asked when I went in and sat down "how have you been?"
I tried to compose myself and then said "I'm sorry, I'm feeling a bit emotional" and then promptly burst into tears.  Not a great start then to my first Perrin appointment, but from there it all got better.
She took a detailed history and looked at the movement I had in my back and neck  Next, she looked for the  four physical signs that Ray Perrin says are indicative of CFS/ME, almost diagnostic tools.  Three of the four were easy to find, the fourth - Perrin's point - less obvious.
She went on to show me the self massage techniques that I will do three times a day and finished with some cranial sacral therapy, before sending me off with a DVD and some paperwork.  It all took about an hour.
I took a slow plod home via the library.  Noticable reactions in my body to the treatment were that immediately afterwards I was cold and couldn't warm up.  That didn'tl last too long.  About two hours after the treatment I had pain above my eyes and either side of the bridge of my nose.  In general the treatment made me feel very much as my normal cranial osteopathy does - washed out.  I was due to be going out to the theatre in the evening and it wasn't looking good for that in the afternoon, It would have been very easy to have not gone,but I spent the afternoon on the sofa and did go out that evening.  I was so glad I did, the comedian we saw was excellent I laughed and laughed and it was a lovely way to finish the day.
When I woke up the next morning (yesterday) I felt great.  I had some energy and enjoyed that feeling.  I knew it wouldn't last all day, but I didn't waste it and it felt good.
Ant watched the Perrin DVD I was given to see how to do the back and neck massage he can help with and then at lunchtime we did the whole routine.
Today I am going to do the three lots of massage you're supposed to do every day.  The first one is a full routine of head, neck, chest and back and then two shorter ones just on the head.
Feeling good : )

Thursday, 19 April 2012

Perrin technique & new symptoms

Tomorrow I am going to start a new treatment - the Perrin Technique . I am both excited and nervous about it.  There is a chance that it will make me feel worse before I start to feel better, but this will be seen as a good thing.  If you have a reaction to the treatment it shows that the treatment is "agitating" your system and getting things moving.  I have considered Perrin before and purchased Raymond Perrins book to read about the approach.  The reason I haven't tried it sooner is that up until recently I would have had an hours drive to the nearest therapist.  I already travel for 45 minutes to my cranial osteopath and know how hard that is after a treatment.  It's exhausting and I can do nothing else on those days.  Now I have a Perrin practitioner less than a mile away, I can hardly believe it.  I know she does not have lots of experience with the technique as she has only recently qualified as a practitioner, but I know she is a respected physiotherapist.
It's time to try something new.  Haven't been brilliant these past few weeks.  During the period September to Christmas last year I felt I was constantly moving in the right direction, I could feel myself getting stronger and stronger.  Since January it really hasn't felt like that, it's been up and down. 
I have a new symptom which has crept up on me and I find a little scary.  It's a type of numbness on my skin, but most strangely, when I am lying down it's as if I am unaware of where my limbs are.  I can think my wrists and hands are on the bed, but actually they are on my stomach or vice versa.  This probably sounds crazy, but I can't think of a better way to describe it.  I don't like the idea of new symptoms, I like the idea of conquering old symptoms.
I have officially taken a break from Mickel Therapy now, I finally got around to letting my Mickel therapist know how torn I was feeling.  Do I feel it has failed? No, it has been very helpful and I hope to go back to it at some point.
I think tomorrow's Perrin session will be mainly an information gathering and diagnostic exercise, but I shall let you know how it goes dear blog.