Wednesday, 28 December 2011

Going Well

Things have been really good in the lead up to and over the festive period.  Just one episode of palpatations on Christmas Eve, but other than that, no symptomns.
A few days ago I changed from taking my minerals orally to taking them transdermally.  This means that I now spray them on to my skin just once a day to be absorbed.  The nice thing about this is that I don't have to consume so much hot orange juice three times a day in which I used to hide the not too tasty minerals, so that is good.  However I have noticed that just a few minutes after spraying the minerals on my body the most disgusting taste appears in my mouth.  It's wierd and I would appreciate it if someone could explain whats going on there?  It's difficult to get rid of this taste, but it's only once a day and at least it shows me that the minerals are being absorbed (somehow?)
Yesterday I went to the Christmas up early, travelled for 45 minutes to get to the shops, trogged around all day carrying heavy bags, got home at about 4pm and still had some energy : )  Had two stops during the day for snacks and food but didn't at any time feel that my energy levels had fallen flat or that I needed to sit down.  This is excellent. 

Friday, 16 December 2011

A Big Step Forward

Haven't posted for a few weeks and have two things that I want to note:
Firstly, I am now managing to break a sweat in the FIR sauna.  It made me feel lethargic and drained the day afterwards and disturbed my sleep - waking every few hours and not getting back to sleep very quickly, but then it gets better.  Apparently initially it is supposed to make you feel bad - a sign that the toxins in your system are being mobilised - the whole point of the exercise really.  If you continue to use it these effects eventually get less and less.  So, I am going to sauna once a week to start with and need to be careful to do it on a day when Ihave nothing on the following day.
The best thing that has happened recently is that the day before yesterday I was forced to run (to catch a train).  I had to run from the car park to the railway platform.  It wasn't a huge distance but it is definitely the furthest and fastest I have run for two and a half years and this level of activity would normally result in one of my strange mid night funny turns and yet here we are two days later and as yet no negative effects.  This is remarkable and definitely a big step forward for me.  I am really pleased about this and positively enjoyed the aching of my thighs as a result of this small bit of exercise - what a wonderful feeling!  My mind is desperate for my body to get back to a condition where it could do some proper physical exercise.  A game of badminton would be fantastic.

Sunday, 4 December 2011

My FIR infra red sauna arrived this week and I've had three goes it in now but still not broken into a sweat.  I'm trying to start gently as my body doesn't respond well to changes in temperature.  So far I'm up to 19 minutes at 45 degrees.  I'm just going to keep increasing the heat and temperature until I start to sweat.
Yesterday was not such a good day for my heart rate, up to 120bpm in the evening.  I'm hoping this is a response to the reduction in my betablocker from three quarters to half a tablet.  I had a similar response about a month after I went from one to three quarters of a tablet.  I had a few days of my rate being up and palpatations and then it  settled back down again so I'm hoping the same will happen.  It is much better tonight 84bpm which is brilliant.
After last weekends pushing through and going out when I knew I really shouldn't have, this weekend I missed two social events, a book group gathering and a friends birthday drinks.  It was a shame to have to do this, but I just knew it was the right thing.  I had my sensible head on.

Tuesday, 29 November 2011

More good steps forward

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

Friday, 25 November 2011

Translocator Protein Function results

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

Saturday, 19 November 2011

A Positive Day

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

Thursday, 3 November 2011

Follow Up with Dr Myhill

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

Monday, 10 October 2011

Taking action & supplements

Not sure what's going on at the moment, another rubbish Sunday energy wise and still a little fatigued today.  Two nights of waking with symptoms and I'm feeling a little down about it all.  I can't help in my mind but link it to the activity.  So, rather than sit here pondering on it I have sent an e-mail to my Mickel therapist and I'm about to phone and make a follow up appointment with Dr Myhill.  I'm also going to make an appointment to see my Cranial Osteopath, he always makes me feel better.
I've mentioned my supplements several times in my blog, so I thought I would document what I'm actually taking right now.  These were all suggested after results from mitochondrial tests that look at how your body converts energy.

D-Ribose 5 times a day this is to help my ATP levels.  The body uses d-ribose to make brand new ATP as opposed to recycled ATP which is what my body is supposed to be doing.
Magnesium Once a day, magnesium is necassary for ATP to release it's energy and for oxidative phosphorylation (making ATP)
B12 once a day to help oxidative phophorylation
Niacinamide one a day to help vitamin B3 levels, again important in the oxidative phosphorylation process
L-carnatine twice a day to try and increase my levels.  It is essential to transport glucose in the form of fatty acids across mitochondrial membranes and into mitochondria where it acts as a fuel source for oxidative phosphorylation.
Co-enzyme Q 10 twice a day, this is essential for normal cell metabolism
Gluathione once a day, this is imortant for the process of detoxification.  It is required for GSH-Px which is an important frontline antioxident
Ascorbic acid I'm taking this once a day as my stomach is not acid enough and is therefore not digesting things properly.
VEGepa twice a day to replace contaminated fats in the cell membranes and fatty organs with clean fats.
Mineral Mix 3 times a day, a mix of 12 essential minerals
Biocare multivitamins 1 a day.  A mix of 23 vitamins and minerals.
That's it. 
Listing these has been a useful process, reminding me of why I'm taking them and what they do.
Follow up appointment now made with Dr Myhill.

Friday, 7 October 2011

Another go at Qi Gong

So, it took me quite a while to recover from last weeks expedition to the Qi Gong class.  My sleep patern didn't really return to it's usual until Tuesday night (6 nights) and I had a classic delayed reaction on Sunday when I had to resort to the sofa..  Strangely I was not put off by this experience, not sure why.
I decided to return again this week and only did 20  minutes of the class.  The teacher is very understanding and said that he understands the thin line I have to tread.  I also avoided one of the exercises which I did last week so I was a bit more sensible.  It feels pathetic that I had to leave such a gentle class after only 20 minutes, I can't believe it's me having to do that, I've always been so sporty, it seems so unreal in that respect.
I didn't feel good afterwards and had to stand down from my evening duties of transporting DD1 to her music class.  Then there is a sense of guilt that Ant has to be at work all day then come home and put DS to bed and transport DD1 to music and later back again.  I did mange to cook some pasta though.   The positive is that I actually slept very well, so that was an improvement on last week.  When I awoke this morning I wasn't fatigued and my heart rate was fine, but my muscles, particularly in my legs had a horrible feeling of agitation.  I await to see if I am hit with delayed fatigue in a few days.  Delayed fatigue happens when your body has to make ATP from scratch rather than recycling it from ADP which is what happens in your body if you don't have ME.  There is a good video that explains it here:
I didn't manage to do any of the half mile walks for my GET therapy last week because I spent most of the week recovering from the Qi Gong.  I'm going to try and start this weekend.

Sunday, 2 October 2011

Qi Gong

I've got quite alot to blog about since my previous post.  The first thing to note is that following my fairly strenuous uphill cycle with son on the tag along bike last week there was no major reaction.  This is excellent news as my heart rate was definately increased during this activity.  So, no strange night time episode that night and no completely flooring fatigue in the following 2 or 3 days.
On Thursday I had an appointment with the CFS physio to discuss increasing my activity levels - a bit of graded exercise therapy (GET).  Although GET is one of the NICE (National Institute for clinical excellence) guideline approaches for ME it is also a little controversial within the ME/CFS community.  My physio says that this is because in the past it has been applied in a one approach suits all kind of a manner and that these days your  own body's response to the activity is taken into consideration.  Anywho, her plan is for me to walk half a mile a day at gentle pace for 7 days out of 5.  If after two weeks of doing this I have no negative response I can increase either the speed or distance by 10% for the following two weeks and so on.  I must alongside this be able to continue with my current baseline of activity at home.  I will give it a go.  When I asked about her experience of people using this approach I'm afraid it wasn't overwhelming - some people normally see some sort of increase - type of reply.  She was however very interested in my supplements and I told her that I thought they were having a very positive effect.
There is a class going on at the local sports centre called Qi Gong which I picked up a leaflet for some weeks ago.  It interested me due to the fact that it is similar to Tai Chi and I have a previous interest in martial arts (Karate black belt).  The class is also only an hour long and takes place in the early evening.  All these things I thought were in my favour.  I mentioned it to the physio at our meeting and she thought I should have a go if i wanted too.  So, on Thursday evening I pootled along and explained to the instructor that this was the first sort of formal exercise I had attempted for over two years and that I wasn't sure how it was going to go, but I wanted to give it a try.
The class was very interesting and I joined in with everything and it was all going fine and then all of a sudden 50 minutes in I instantly knew that I had overdone it.  There was no warning or gradual build up, just BOOM, that was it, I knew I could do no more and that actually I had gone too far.  I said my goodbyes and left.  I slept really badly that night, constantly waking.  It took me Friday to recover but by Saturday morning I felt okay again.  I have not been put off by this experience, I am going to go back this week but will only do 30 minutes of the class and then leave.
Yesterday I attended a day long introduction to meditation and visualisation workshop with a friend.  It was nice to spend a day relaxing and meditating, but it also showed me how far I have already come with my meditation practice.  I think what I'm doing at home is fine.

Friday, 23 September 2011

Tag along

Well today the bicycle did come out of the shed : )  Not only the bicycle, but also my sons tag along bike that attaches to the back.  We cycled together down to the village to the library and shop.  Getting there is easy as it's mostly down hill, still, when I got off the bike in the village I felt light headed.  We did the few things we had to do and then mounted our bikes again ready for the return journey.  Coming up the hill I realised that my gears 1 to 7 weren't working.  I anticipated that we would have to get off before the top and walk but actually we made it all the way.  I had to shout lots of encouragement to DS behind me to peddle like billyio as my engine was running out of power.  Pedal he did and together we made it all the way home.  I felt quite emotional when I got inside as I thought about us coming down a slope in the lane both exclaiming "Wheeeeeee" as our bike freewheeled towards the final incline before the house.  Doing something physical with him like this felt great.
This situation came about following a Mickel therapy session I had this morning via skype.  We talked about my sleep patterns.  Also about not feeling guilty about my current need to put myself first.  I need to look after my own needs so that I will be stronger and be able to do more for the family.  We also talked about my fear to commit fully to Mickel because of it's conflict with lots of the medical advice I've been given.  This is a tricky one.  Anyway, I was inspired to get on my bike.
My challenge now is to not think about what negative effects the cycling will have on my body, but to enjoy the fact I've done it and look forward to and plan my next activity.  It is about retraining my brain to have positive thoughts associated with physical activity and get rid of all the horrible thoughts of symptoms and funny turns that my brain currently associates with physical activity.  Hopefully today will have gone some way to helping that.
Earlier this week we took in a delivery of logs.  They are emptied on to our drive and we have to wheelbarrow them around to the back and load them in the log store.  Eighteen months ago I tried to help Ant with this task and made myself ill with a relapse that lasted several days.  This week however I'd like to think I was a real help.  I moved about a quarter of the logs in the wheelbarrow before realising that I'd done enough and stopping.  This was a good achievement.  It's really useful to have a like for like comparison with such an activity to see how much I've come on.  The only negative effect?  My body was aching for the next two days, but how nice to have a body aching from some physical activity : ) 

Thursday, 15 September 2011

A visit to the cranial osteopath

This morning I have been to see my cranial osteopath.  It takes me around 50 minutes to get to his practice and fortunately as Ant is on holiday he offerred to drive me.  This is just as well as I think I would have struggled to drive back today, it certainly wouldn't have done me any good.
Lots of positives came out of my appointment.  I explained that I had been feeling really good even though I'm showing all sorts of symptomns and he thinks these symptomns are all signs of change taking place in my body.  He also doesn't think that my body is struggling with the decrease in betablocker.  He thinks that my circulation is infact benefitting from the reduction, so that's good.  We talked about ascorbic acid and I mentioned Mickel Therapy.  He is concerned about me overdoing it a bit.  I need to be mindful of this and not too impatient.
The treatment was slightly different today.  He spent the whole time on my head and towards the end of the session his activities seemed a bit more forceful than usual, it is usually such a gentle treatment.  When he'd finished he said you're probably going to feel some after effects from  today's session.  See how it goes over the weekend and just go with it, but if there's anything that your concerned about still on Monday then call me.  So, this could be bad timing as this afternoon the whole family have driven off to Yorkshire without me.  I'm now worried I'm going to get some symptoms or even one of my funny night time episodes following the treatment and Ant isn't going to be around.  I feel so much safer when he is there because he knows just what to do and say when these things happen.  When I hear myself saying this I feel really pathetic.  I have been such a strong woman in the past, but now being on my own concerns me.  Anywho, the positive side of this is that I can just spend the whole weekend recovering and relaxing and not under any pressure to do anything else, which is probably a good thing.
I finished my appointment at 11.30am  and was completly wiped out when we got home so have spent the afternoon on the sofa.  Five and a half hours later I'm starting to feel some energy return. It was a good appointment today, I just hope I don't get any nasty response, but if I do, i'll deal with it : ) 
A tv dinner beckons.

Wednesday, 7 September 2011


Well the bike is still in the shed, haven't gone as far as getting that out yet, but I have walked down to the village this week.  It's been a bit of a mixed time since last posting.  Everyone has been telling me I look so well and I have such a good colour these days which is great to hear, but at the same time I have had mouth ulcers and cold sores and spots and my hair continues to fall out!  Despite all this I DO feel better than I have for two years.  Very strange.  I know that my cranial osteopath will probably say that this is a sign of infection trying to leave my body, I hope that's the case.
Sadly, my heart rate now seems to be responding to the fact that I've cut down my betablocker medication and my heart rate now seems to spend alot of time at around the 100 bpm mark.  This didn't start until about three weeks after I'd reduced my medication so I had thought all was going well and there wasn't going to be a reaction.  So, my plan to reduce the medication again at the start of September was put on hold.  I'm going to wait a little longer and see if it settles back down.
This week I heard from a friend who has CFS.  She has been so well for years and was back to doing things like exercise classes at her local gym.  I always took much encouragement from this as she had been so bad at the start of her illness, far worse than I, so it was very motivational to see her doing so well.  Unfortunately she has had a relapse over the summer and been unwell for about 8 weeks.  This shocked me.  She seems to have taken it in her stride and says when this happens these days she knows she will get back to her previous activity levels again.
On a positive note I went along to a lunch time meditation session today, just for half an hour, but it was very interesting.   It was a small group, but a real mixture of people.  I'm not sure I will go again, but I'm  glad I've gone just to see what they get up to.  It sort of illustrated to me that actually my meditation is going along okay just as it is, me and my ipod 

Monday, 29 August 2011

It's been over a week since I last posted.  After feeling weak on Sunday it took me Monday to recover and I felt much better by Tuesday.  On Wednesday I had a follow up with my Mickel therapist which was probably quite timely to try and keep me back on track after my wobble at the weekend, the rest of the week was good. 
Yesterday we went to the forest for a walk.  I walked a mile and a half, but my legs felt tired and weak. I don't know now whether what I'm feeling is fatigue or whether it is deconditioning because my body hasn't done anything physical for the last two years (my thighs are so much smaller than they used to be).  This situation is creating a bit of a crisis of faith in the Mickel therapy.  It goes against all the traditional pacing advice that I have been given and have followed for the last 6 months and I am very nervous of that.  Ant says I should combine the two and continue with the Mickel stuff but pace myself too.  I can see how this might sound sensible, but actually I feel it would probably mean not doing either properly.  I am going to persevere with the therapy I need to give it a good shot.
One good thing is that I have manged some weeding in the vegetable patch this week which felt really good.  I have missed gardening, it is something I struggled with because of the continual bending, but this week it has been fine.  We have a fine harvest of onions, potatoes and courgettes which have been adorning our plates for a few weeks now.
I'm on the verge of getting my bike out of the shed.

Sunday, 21 August 2011

High over

Well I was on a high from my great week in the New Forest, but this morning I have sufferred a setback and it has brought me right down.
I was play fighting with one of the children and got accidentally punched in the chest just a little too hard.  My body reacted straight away.  My thighs have felt like jelly all day and my heart rate has been up.  It's like I can feel my whole body pulsating inside.  My body just feels so delicate again after I had felt so relatively strong for me.
Ant keeps telling me this is just a temporary blip and that I still need to be careful, but i feel its such a set back and I feel really sad.  The worst thing is that last week I had a taste of what it feels like to be normal again and now its gone.

Fab Week

Whilst the children have been usefully and purposefully occupied elsewhere (music school), Ant and I have  spent the past week in the New Forest.  The idea was to relax and unwind and this we did.
The good news is that for the duration of the holiday my energy levels were great.  On Wednesday we hired a tandem and cycled 11 miles.  Ant said he couldn't feel me pedalling behind, but I was, all the way.  It's a bit strange being on the back of a tandem as you can't see where you are going nor do you have any brakes.  This means you have to put all your faith in the person in front of you and trust that they are going to do it right and not get you into any scrapes.  We manged the whole 11 miles without falling off and found a nice pub on the way.
On Friday morning we went into the forest and walked non stop for an hour and a half.  This is an unprecedented distance for me at the moment and I couldn't believe it.  There is still more... on Saturday after we had picked up the children, we went for a short walk and came to a huge sand dune at first I sat at the base whilst the others climbed to the top but then I thought I'm going to have a go and up I went slowly but surely to the top.  They all gave me a big cheer at the top and I felt quite emotional.  I was reminded of how hard it was for me to climb up to my seat at the Take That concert in July.  The difference between the two was incredible.  I don't know what has created this great difference, whether it is the Mickel Therapy or all the supplements I'm taking having some noticeable effect, I'm guessing probably a combination of the two.
The week was a great success and has felt like a great achievement.

Sunday, 14 August 2011

It's a week and a day now since I returned from my Mickel Therapy weekend.  It's been a really good week and I haven't had to take myself off to bed for an afternoon nap all week.  My family probably think I have been abducted by aliens.  What Mickel therapy has shown me is that actually I am not very good at analysing or even recognising my own emotional state.  I find trying to pinpoint what emotion it is that I'm actually feeling at any time really hard, but it is necessary so I must work at it.
I haven't been going silly pushing my body to extremes this week, but neither have I stopped myself from doing anything that I've wanted.  It has given me great pleasure to play swingball in the garden with the kids.   It's an active pastime that I can do with them and the closest I've been, along with our garden cricket for which I employ a "runner", to something that feels like sport for two years!
My house has benefited from my new found energy this week.  The kitchen has stayed in a reasonable state all week and on Thursday I decided to completly spring clean our bedroom.  It took two days but now the job is done and it looks lovely, it's one of those jobs that I've been wanting to do but not had the energy to tackle.  Yesterday we harvested the greengages and with the help of Ant and the girls who were busy washing and chopping, I spent a couple of hours jamming them and stewing them for the freezer.  This morning I was up at 6.30am to finish off the last batch.  These things, that might seem like very small things to your average bod, are all very positive signs to me that both mind and body are moving in the right direction.

Tuesday, 9 August 2011

It's three days since my last post and I haven't had any fatigue in those three days which is pretty remarkable when I think about what I've done.
On Sunday we drove to the local forest and I walked a mile, this is further than I have walked probably since about April so quite an achievement.  I was fearful on the way there, fearful of two things
1) pushing the boundries and making myself ill.
2) that the Mickel Therapy wouldn't work
So, I observed my fear using a technique I have been reading about in Eckhart Tolle's "The Power of Now" He says and I quote:
"So when you listen to a thought, you are aware not only of the thought but also of yourself as the witness of the thought.  A new dimension of consciousness has come in.  As you listen to the thought, you feel a conscious presence - your deeper self - behind or underneath the thought, as it were.  The thought then loses it's power over you and quickly subsides, because you are no longer energizing the mind through identification with it."
I have found this useful.  It's a great book.
After the walk in the forest I walked around a few shops in the local town and then drove my daughter to the swimming pool and back.  No symptoms.
I'm trying to restrain myself from the temptation to go mad and do too much too quickly, but I have decided that next week whilst we are on holiday I am going to hire a tandem bicycle for a day for Ant and I.

Yesterday my GP phoned and said that he had spoken to the Gastro doctor about the high amounts of fat in my stool sample.  The Gastro doctor had said that if I wanted I could take pancreatic enzymes as recommended by Dr Myhill but that I would also have to take a type of Anti acid with it, this would go agiainst what Dr Myhill suggests as she thinks I need more acid in my stomach.  I decided not to take the pancreatic enzymes at this stage.  I'm going to stick with my current supplements for the next 4 months and then see where I am.  At least I know I have something else to try in the future if needed.

Today is my 4th day taking slightly reduced amounts of my betablocker.  Yesterday I was very conscious of my heartbeat and thought that it was a little fast in the evening, but today it has been fine.  I'm just going to have to wait and see on this one.

Saturday, 6 August 2011

Mickel Therapy Weekend

Yesterday I travelled by train to meet my Mickel Therapist.  I spent the afternoon with him and then stayed over at a local hotel and saw him for another two hours this morning so pretty intense really.  Following these sessions I now have all I need to come away and put Mickel therapy into practice.   So how do I feel about it now?  I think it is going to take some hard work to put into practice.  I also have to put faith in the method as parts of it challenge some of my previous thinking, but if it's going to have it's best chance of working I need to be fully committed, so I have to go for it.
Initial signs are good.  On Friday after travelling down and having a nearly 3 hour long session I walked back through town to my hotel - further than I've walked for some time.  Today we had another 2 hour session, then a two hour train journey home.  Ant was expecting me to spend the afternoon on the sofa completley exhausted when I got home (this would have been normal) but instead I took two of the children down to the bowls club to see their grandma, then I stopped off at a friends house for a long chat before coming home and then popping down to see a neighbour.  I'm not fatigued.  I am however going to bed now!

Tuesday, 2 August 2011

I've booked it

Well, I'd had a really busy weekend and coped with it very well.  Yesterday (Monday) I was fatigued, but it wasn't a relapse or a crash.  I had a lie down in the afternoon and my tolerance levels were low, I felt stressed and had a short fuse, but my spirits were high.  I slept really well on Monday night and today I feel back to where I was before the weekend i.e. what is now "normal" for me.  This is all very encouraging.

So today I have taken the plunge and booked myself some appointments with a Mickel Therapist.  I had been hesitant and I know why, it's because I've read recovery stories where people say that Mickel Therapy completly cured them.  My hesitance comes from the thought, at the moment, that this might really help me, but if I start it and it doesn't work then it has failed.  At the moment in my mind this treatment could cure me and it's nice to have that hope.
I'm going to make the two hour train journey on Friday and have my first treatment that afternoon then I will stay over night and have a second session on Saturday morning, returning home in the afternoon.  I am both excited and nervous.  The practitioner I am going to see sounds lovely on the phone and very understanding.

I had a phone call from the hospital today about the blood tests they did last week.  My ferritin levels are down again.  When I was first ill my ferritin was down to 5.  January this year it was 7 but after three months of iron supplements by April it was up to 40.  Now, just over three months later it is back down to 15, so I await a letter but I suspect that I might be back on the iron supplements.

Sunday, 31 July 2011

Swimming in positivity

Yesterday I received a copy of David Mickel's book about Mickel Therapy and this morning I sat on the hammock out in the garden reading it.  His theory that the hypothalmus has been sent into overdrive does resonate with me and I would like to try the treatment.  There is just one small issue...the nearest practitioner is nearly two hours away by train.  The Lightening Process treatment which I'm also considering I can access locally, but I see that as more helping me to deal with my symptoms whereas the Mickel Therapy much more targeting the actual triggers of the symptoms.  I have more thinking to do on this choice.
I had a really good appointment with my Cranial Osteopath yesterday morning.  He said that he thought things were moving more, more fluid.  I hope that this is a result of all the supplements I have been taking since I saw him last.  He was also pleased with how long it had been since my previous appointment (between 5-6 weeks) and how my body had coped in that time.
By the time I had driven home from my appointment I was good for nothing and only just managed to gather enough energy to eat some lunch. I had to miss out on a family trip out to Marlborough planned for the afternoon, but it would have been ridiculous for me to go, I had no energy.  Instead I went to bed for a couple of hours.
In the evening we went to friends for dinner and had a lovely evening.  I drove home and didn't get to bed until 11.30pm which is really late for me and today I feel fine, this is very good.  Infact today DD2 wanted to go for a swim, something I used to love to do but have been avoiding - besides the energy it uses, I struggle with the cold.  Today however I said that I would take DD2 and DS1!  This is very strange behaviour on my part and makes me think again as previously mentioned that my mind is ahead of my body on the road to recovery.  Anyway I did take them and although I spent three quarters of an hour just sat on the side of the pool dangling my feet in whilst they frolicked around, I did get in for about 15-20 minutes and played with them before the cold got me and by that time they were ready to get out.  It's 3 hours later now and as yet I have had no crash of energy which is brilliant.  I am conscious that this could still happen at any time in the next 2-3 days, but I'm hopeful that it will not.  I must do nothing tomorrow.

Friday, 29 July 2011

Thinking about therapies

It's been a busy week. 
On Tuesday I went on the train to see my specialist.  She is happy that the pacing is working and that I have found my baseline activity levels.  She would like me to try and increase my activity levels now by doing a short walk each day, so I have been walking to the end of the lane and back each day, that's about a quarter of a mile I guess.
On Wednesday a nurse came to assess me for an insurance claim.  She was with me for two hours and took quite a lot of information.  I don't hold out much hope on them paying out, but it's got to be worth a go.
On Thursday I went back to the Therapy Centre for my last meeting with the therapist I have been talking to there.  Seeing her makes me realise how far I have come both physically in terms of managing symptoms and mentally in dealing with this whole ME situation.  A lovely physio at the centre is thinking about training in The Perrin Technique.  I've lent her my book about the technique and I'm  hoping she goes for it as I would really like to try it and the current nearest practitioners to me are both 45-60mins away by car.  I have even suggested that I might pay for her training if I could have my treatment for free.
I have been looking at some other treatments today and have spoken to practitioners in Mickel Therapy and the Lightening Process on the phone this afternoon.  Both practitioners are recovered ME sufferers and it was inspiring to speak to them.  I am seriously considering having a go at the Lightening Process, remarkably it looks like I might even be able to do that locally which would be a big bonus.  If anyone out there reading this has had a go at either please feel free to leave a comment and let me know your thoughts.

Friday, 22 July 2011

A Good Day

Well, I've carried on taking the Niacinamide that I mentioned in the last post and haven't felt any repeat of the "buzz" that I had that fiirst day, nor of the horrible headache that came later that first day either so those things were obviously unrelated.
I have introduced the next new supplement too... B12 in the form of a 5000mcg spray which I spray under my tongue.  It tastes DISGUSTING!  I have to have my breakfast ready to eat and brush my teeth really quickly afterwards.  Yesterday, the first day I took it, although it had gone from my mouth my mind could still taste it at lunchtime.
Anyway, today has been a good day.  I had a really good meditation before getting up and felt soooo relaxed.  Whilst getting ready for the day I found my brain having ideas about things I could do.  One of these ideas involved running a regular junk modelling session for my youngest and his friends, the other about doing some work in the greenhouse.  Neither of these are the sort of things I have contemplated for ages due to the energy involved in either.  But, this morning it seemed really positive to me that my brain seems to be "feeling better" ahead of my body.  Perhaps all of these supplements are having some effect.  It's good that I'm even starting to think about doing such things.  I do need to be conscious of my doctors words however should my body catch up and feel like it has energy for such activities: any "excess" energy my body has must be used for healing.
After breakfast the three children and myself tackled the lounge which was starting to wind me up as it  was so messy and I can't remember the last time I dusted or hoovered it.  It was desperate and needed some attention.  Together we sorted through it and although it wasn't perfect by the end it was a good outcome - I didn't over do it and it looked much better.  Tidying has been made much easier for me recently following the purchase of a "Classic Grabber".  I was previously struggling with bending down and picking things up on a regular basis such as you might do whilst tidying due to my POTS Syndrome.  This sort of activity would tire me incredibly quickly.  So, the grabber has come to the rescue.

Classic Grabber
 We have great fun with it too.  My youngest thinks it's a fantastic prop for all his battle games.  I love picking up dirty socks that the little ones are in the habit of leaving on the floor and throwing them back at the children.  It can pick up the smallest of things, even tiny bits of lego.

So after tidying I went straight outside to the garden and did another meditation in the gorgeous sunshine which hasn't been possible for a while as the weather has not been so good.  I love meditating outside.

This afternoon the children and I went to socialise with friends and now here I am at 9.10pm (which is past my official bedtime) and I'm still feeling good.  Today has been a good day.

Monday, 18 July 2011

Quite A Buzz

Today I introduced a new supplement... Niacinamide B-3 1500mg.  I'm not good at swallowing tablets and these things are HUGE.  Anyway it got swallowed down with my standard morning omlette at about 8.30am.  At 11.35am I found myself unusually alert and with a bit of a "buzz".  I don't know if it had anything to do with this latest addition to my supplements, but tomorrow I will be looking out to see if there is a repeat of this very nice feeling of alertness.  Didn't last all day unfortunately, but good while it did.
Something else I noticed today - We all know that ME/CFS effects one's capacity to tolerate stress.  Today I raised my voice at my children in jest, I was messing around, but it was like my body couldn't tell the difference between me raising my voice in real anger i.e. in a stressy way or just for fun, which is what I was doing.  The reaction in my body, one of instantly feeling stressed and uptight, took me by surprise and reminded me what a fine line I stand on and how delicate that trigger is.

Monthly Blip

It's become apparent to me that my monthly menstruation cycle is having a big impact on my CFS symptomns.  Ant says that he has always been aware of this, but I think that in earlier days when I was just feeling rubbish all the time I didn't really feel any worse at that time of the month.  For the past two months however when I have been feeling somewhat better in general I have therefore noticed more easily a significant increase in my general feeling of malaise, fatigue and horribleness, particularly on the first and second day of my monthly cycle.
Sadly, this month that co-incided with a bar-b-que invite that we'd had from friends.  I had been feeling rotten all day, but decided that I'd really much rather feel rotten in the company of good and funny friends than just at home.  Retrospectively, I'm not so sure that this was a good decision on my part.  My friends were good and very funny, but I wasn't and should have been at home in bed.
So, armed with this new found knowledge I should of course make sure that I don't plan any major events when I know it's going to clash with my monthly cycle, but, in reality, I am weak and the call of my friends is strong.

Thursday, 14 July 2011

Time Management

This morning I turned up late to a therapy session on the topic of time management!  Not a good start.  Not only that, but I also had not had time to prepare the information that the counsellor had told me last week would be helpful, eeek.  Of course the truth is that I had had the time, but that I had not prioritised it.  On Sunday I thought I would have time to prepare it on Tuesday, on Tuesday I thought I would have time on Thursday and then before I knew it it was Friday morning and it wasn't done.  Instead I pulled out some information about my week that I had prepared when I first started Pacing, so I wasn't too useless in the end.
These counselling sessions are being offered to me free of charge throughout the month of July by a local Therapy Centre, a charity which relies on charitable donations and grants.  I am keen to use them as my NHS Occupational Therapist, who has been really brilliant, can only offer me 6 sessions and I've already had 4 with her.  I'm keen to save the last 2 sessions for when I think they would be really useful so I am supplementing them with these sessions offered by the Therapy Centre.
Anyway, back to Time Management.  There's an awful lot of procrastination going on in my brain at the moment.  I find it hard to set myself to tasks and see them through.  I can start several things in a day and not finish any of them or I know i've got several things I could do, but don't even start them!  Today the therapist thought this might be a result of all the relaxation I've been doing recently.  After years of running at full steam, I am finally learning to slow down.  This has happened due to the sessions with a physio and my occupational therapist who introduced me to pacing.  I also saw an NHS specialist earlier this year who couldn't emphasise enough that I had to do less.  She introduced me to the 50% rule: Only do 50% of what you know you can do - If you think you can walk a mile only walk half a mile - I think it's a good policy.  In addition to this I had some Mitochondrial tests done by Dr Sarah Myhill which also suggested I needed to do less and the message is at last getting through.  All this slowing down is really good for me, but it's not helping my time management much.
I have been very good at saying "No" to things recently, this is something that has been difficult for me in the past.  I now find saying "No" quite liberating and get a buzz out of knowing I have done the right thing.  Where I struggle with this is when it involves the children.  If someone rings and says "We're going to the park this afternoon, do you want to come?"  I find it harder to say no, when sometimes perhaps I should.  This is because I don't like to feel that the children are missing out because of my reduced energy levels or my need for rest. 
Anyway, my task for the next two weeks is to turn my mind to time management, it's nothing complicated, just the basic stuff that anyone in a work environment is using every day - a prioritised action list.  I am going to create a "Mega Master To Do List".  Just starting to create such a list seems like a daunting task at the moment, but I'm sure it will help.  Then I need to prioritise. If I can then find the completely empty week that is going to be necessary to tackle my sons bedroom that would be useful : )

Wednesday, 13 July 2011

How it all started

It was a beautiful sunny Thursday afternoon in August 2009.  We had gone along to a local park for a game of rounders with lots of our other home educating friends.  The adults of the group often participated in these games alongside the children as I had chosen to do that afternoon.  Towards the end of my teams innings there was just myself and one other team member left in.  We were slogging and running with all our might so that we might get around the rounder and bat again.  I finished a rounder and became aware that my heart was pounding out of my chest, really unnaturally, like I'd never felt before.  I had a quick rest but before long it was my turn to bat again.  I slogged and ran, but then changed my mind and  as I tried to change direction and run back to the batting post I slipped and fell heavily.  As all the children were around I just picked myself up and brushed myself down, but inside I was feeling like I'd had a pretty nasty fall.
Then all was normal until the Sunday evening three days later.  Ant (my hubby) and I were sat at the computor watching a program on iPlayer.  All of a sudden my heart started pounding again, racing, I felt hot and sweaty but cold and shaky.  I didn't feel well and took myself off to bed.  I know now that this was the start of my rendezvous with ME/CFS.
When I woke up the next morning my heart rate was still up and I was completly drained and weak.  I managed to get an appointment at my local surgery that Monday.  The only obvious signs of illness were the fact my heart rate was still up between 100 and 120 beats a minute and I had a slight temperature.  The Doctor thought I might have a urine infection and gave me two weeks worth of antibiotics.  I ploughed on through that first week but as soon as the weekend came and Ant was home I took to my bed and didn't get up.  I think this is when those around me probably thought that something wasn't quite right as this was very unusual for me.
It actually took me a month to recover from this first episode,  during that month my body felt so delicate and my muscles so weak.  My thighs, which due to my years of previous karate training and sport had always been so strong just felt trembly and as if they might give way below me at any time.  Some days it was an effort to talk.  I remember struggling with the energy required to read a book out aloud to my son.  But, gradually during that month my energy slowly returned.
We had planned a holiday in Devon during September and off we went, I wasn't quite right, heart rate still up, but stronger than I had been.  It rained for one of the days we were away and we decided to take the children to an indoor theme park that we know.  There was a soft play area and I had obviously felt like I could participate in following my then 4 year old around on my hands and knees.  All seemed okay.  That night I was awoken at about 1am with my heart pounding and uncontrollable shakes, cold but with sweaty feet, wanting to empty my bowels every few minutes  all the previous horrible symptoms. I  went back to sleep, but again when I woke up in the morning I was completly drained and my body felt awful.  I managed to get an appointment to see a Doctor down in Devon that day - waste of time - thought it was probably more of the urine infection and gave me more antibiotics which I didn't take (I'm not a keen pill popper).  I did my best lying on the beach that day whilst everyone played around me although the sun was out I felt incredibly cold and just couldn't warm myself.
Luckily we were going home the next day.  The journey home in the car that day sticks out in my mind as one of the worst days.  I can't describe how bad, how weak I felt.  We phoned on the way home and made an appointment to see the doctor as soon as we got back into town.  Luckily for me it was a lady Doctor who had known me through some adult education work we had worked on together.  She must have taken one look at me and thought that something definately wasn't right.  I looked like **** as they say.  So, at this point, she ordered lots of blood tests.
I hadn't driven for a month as my legs didn't feel strong enough to work the pedals, but day by day my strength recovered again.
Then a third episode..and finally I began to link these funny turns I was having and the fatigue with physical exertion.  It was October 2009 and googling around I came across a passage which described the symptomns of CFS, in particular the idea of delayed fatigue which I was not familiar with i.e. that the fatigue  response might not happen until 2 or 3 days after the incident that has created it.  It was like a Eureka moment, with the exception of muscle and joint pain, this passage was describing me.

Tuesday, 12 July 2011

An introduction

Hello and welcome to my new blog, the purpose of which is to describe my own personal journey in search of recovery from ME/CFS. 
I'm sat here at the keyboard sipping on my lunchtime mix of mineral supplements,  so as you can see I have already started on this journey, but I am in the very early stages and still have alot to learn.
At the moment a large part of my world seems to revolve around what is happening inside my body and I am concerned about becoming a "health bore" in the eyes of my friends.  With this blog I can pen my activities and thoughts so that I feel I have "voiced" them and anyone who's interested can take a look.
So, a little about myself.  I'm 44 years old and have always been really active and sporty, a successful athelete and team player at school, a county badminton player, a blackbelt in Karate, 5 a-side football player, athletics coach, you name it I have probably had a go at it.  Work was always pretty full on too.  I worked in sales, first repping then into management always charging around trying to hit targets.  It was not unusual to drive for two hours to do a full days work and then come home.
I left work when starting a family and now have 3 children.  Since their arrival I have always worked for myself in the area of adult education.  In 2005 we took the decision to Home Educate the children, they are now 14, 12 and 5 years old.
Hopefully, that's enough personal info to be going on with, now... let's get on with this recovery...