9th February 2014

Unbelievable that so much time has passed but that says something about my health!  I am busy, busy, busy and very well, 100% well.  I stopped the Perrin Treatments early in the year of 2009 and explain why in my book that I began writing in Sept 2011: A Happier, Healthier Lifestyle , and it is now out on pdf through paypal and ibooks through itunes.  I have to say that since stopping the Perrin Technique I realised that it was my own regime of stretches and avoiding toxins that aided my wellness.  Dr Perrin’s findings on the probable cause dove-tailed with my stretch routine and when I attended a presentation of his on his findings – I realised why my own attempts were also helping me and I doubled my efforts and researched more thoroughly into foods – why they helped and why they hindered.

My son encouraged me to write about my wellness as since 2009 my family had noticed how well I was and felt my achievements would help others.  There was a eureka moment when I began taking a calcium and magnesium supplement and combined with everything else I was doing, wellness began in earnest and just got better and better and better.  It wasn’t so much putting things in place and then time healed.  It was all to do with fine tuning my diet and being rigorous about it and my own stretch programme.  Read all about it here: A Happier Healthier Lifestyle.

8th July 2009

So much to say, so little time to say it!  Suffice to say, a very interesting few weeks of coping! I and my family and friends all say I am much improved.  I do feel improved and I don’t mean to be negative but I will watch this space.  I need to take advice on this but there must be a gauge to show wellness.  Something like full energy for at least 6 months with no episodes of brain-numbing tiredness.

I need to find out about that … I’ll be back!

8th May 2009
I have had to cancel my Perrin Treatments for the foreseeable future.

I am disappointed and not disappointed at the same time.

There are two reasons.
One is that an incident threw me back to an episode in childhood that I thought I had dealt with but since then I have had terrible IBS. I cannot face the treatment while feeling like this and being too far from a loo is a problem. I am being tested for all sorts and so far all is clear.

I have been tested for blood in feces – this was clear, a significant blood test for: iron, liver, kidneys, celiac and others I can’t remember – the test came back OK. I was surprised about the celiac test, but when testing the blood, I think you have to be eating the allergen for it to show and I haven’t been because it makes me too ill.

But as the episode has gone on for 7 or more weeks now, I am being sent for a colonoscopy. Not looking forward to that. Feel like cancelling.

The other reason for stopping the Perrin Treatments is the Recession. My money isn’t stretching very well and something has to go.

However, the odd thing is that while I have had this upset, I have felt very well ME wise. I think it is to do with flushing through the toxins because I have certainly been doing that!

This doubly confirms for me, that Dr Perrin has hit the nail on the head with this CFS/ME and the congested lymphatics.

I hope to return to Perrin Treatments as soon as possible, but I thought I’d give my purse a rest until my nether regions are better.

6th April 2009

The latest views on my progress with The Perrin Technique: How I feel now

I receive communications with questions about trying the Perrin Technique and one chap decided to go the Perrin Technique after some enquiries. He had been on the Reverse Therapy process for sometime and gained some success but still not over the M.E. and felt frustrated. He kindly said I could publish his emails, so click on Some queries about the Perrin Technique

I publish his latest email here:

Hi Marianne,

I’ve been to see a Perrin technique therapist for a couple sessions and it has been beneficial as my sleeping has drastically improved.

How are you keeping?

Take care

A diary of my treatment

Most Recent Entry
2nd February 2009
I have had the most fabulous week ever.
It started badly on Monday when I felt so M.E.ish that I rested for the whole day. Not complete bed rest, but switching off rest.
That paid dividends because on Tuesday I felt so much better.
And the week just got better and better with organising and doing my day.
Brain function good, cognition good, sleep good, pain levels almost non-existent (But existing just not making huge demands on me!)
We went away for the weekend too and normally I struggle with that. I normally struggle with the socialising and talking and so go to bed early. Or leave the event early.
I didn’t this time and behaved like anyone else, following the thread of conversation and contributing. Staying up for as long as they did. Attending functions and joining in the fun. And coping with the long drive home.
Well actually that was when it went a little pear shaped because a journey of 4 hours took 7. However in normal M.E. circumstances I would have lost the plot and had problems and wouldn’t have been able to share the driving with my husband, but not last night.
I was exhausted when we did get home but despite coming home to a cold house, and no food in the freezer (due to the auspicious of my children who had kindly elected to look after the dog – which they did but ate everything in sight too!) I was a little phased by that but coped, I was more upset about my expensive perfume and gorgeous hand-bag both christmas presents that had been almost ruined when the perfume leaked. Evenso despite all that, I was not as brain-dead, comatosed or weak as I would have been in the not so distant past. I rallied round, found something to cook and eat and watched TV till I fell asleep – normal behaviour if I measure it against my husband’s – brilliant!!
Have to say, am tired today so I am doing what I do best and taking it easy!!

So with feeling so much better and therefore more hopeful, I am plotting and planning my future back to work. I do a little work from home, but it is looking more and more hopeful that I can achieve more.
I do have help in place and will not lose that if I increase my work load. That will stay forever and a day. That is the lovely lady who irons our clothes and does some cleaning.
But it is exciting isn’t it!

7th January 2009
2009! Well … it happens doesn’t it? One day finishes and another starts and eventually another year disappears and the new one appears. We don’t celebrate each passing evening or dawning day but we should really. So I am not a big fan of celebrating the New Year because each morning should be a celebration!
I got flu over Christmas and I have never felt so ill. I wanted morphine for the pain, I felt sure I should have been admitted to hospital. It is taking me a long time to get over it. I am having to go back to serious pacing. Which means one activity one day, bed rest another. Climbing stairs is difficult and sitting – all the symptoms flood back.
But not quite all. The foggy thinking isn’t too bad. My aches and pains aren’t too bad. My heart palpitations are Ok. Muscle cramps and spasms are fairly OK.
I also feel that with all the family activities in the summer I didn’t pace enough. Having been able to have done so much more before the family activities, I was still in the mode of ‘doing’ after the activities and I think that left me more tired and my immune system more compromised. Then on top of that was the setting in of winter and less daylight and the hour changing. So I have learnt a hard lesson.
I may be feeling better with the Perrin Technique but I still need to pace myself. Seriously pace myself. I have to say I find that a bit tricky because it is lovely to use the energy I have to get things done!

8th December 2008
I am not due another Perrin treatment until next week. I feel I have been feeling more fragile since the clocks went back. I have always felt that changing time could affect our natural body rhythms. The light when it first penetrates the dark causes a reaction through our eye to the pineal gland which then affects the hypothalamus. I find I wake up normally when I first hear the birds at about 6:30am and so I know that even though it appears to be quite dark dawn is breaking a little at that time although not seen until after 7am here in the West Country of the UK. Then there is the other aspect of sunlight on our skins causing Vitamin D to be formed which helps us absorb calcium. Calcium is required for every cell in the body and many symptoms of CFS/ME are similar to Vitamin D and Calcium deficiency. For the pineal gland to transmit messages stimulated by the light, it requires calcium.
I have also found that when I am more calcium and Vitamin D efficient I am more tolerant of allergens but as soon as my calcium and vitamin D statuses are challenged my tolerance levels worsen.
However despite this, I know I am so much better than I was last year at this time. I am able to do more without feeling like my heart or muscles are going to give out. I am able to plan more. The thought of doing something does not phase me at all. For example I am thinking of painting one of the bedrooms. When I say I, I mean, we. What we do is my husband prepares everything and I do as I am told and use the roller properly and the little paintbrush for the edges. The point is I can, not only think about this, get the paint and do some painting but the thought of the whole project doesn’t cause me to lie down in a faint for months!

It is slower progress than I thought it would be with less obvious plusses but there are plusses and on the whole I do feel better.

Here’s to this time in 2009 and the hoped for almost 100%! Ok 80%!!

26th November 2008

I apologise for not adding to this diary for two months now! I have had a poor few weeks and am now switching off and am in bed. Well this is me, switching off, obviously I am not, I am writing this using my laptop. I am also sitting to do it, whereas before ‘Perrin’ I was always semi-reclined. So that is an improvement.

I say all this to remind myself because having to switch-off a little came as a blow but as my Osteopath told me I may feel better but I still need to adopt a selfish attitude and think about myself and what I want and don’t want to do. I do feel so lazy and selfish if I think like that but needs must …

Well, well, well, I think I should read my own diary entries more often. I have just re-read below for the 24th Sept 08.

It is really tricky this getting better. You do feel able to do more, and the risk is to do too much. There is also a difficulty in knowing the difference between what you want to do and what you know you cannot do.

Also as we all know with ME, the effects of doing too much are not seen until a few days later. So it is doubly tricky to assess. As someone said: Think what you can do and halve it. Trouble is there are things I have to do and I would like to half those and I think I can’t.

With this illness I have never been able to pace myself sensibly. I am a boom and crash person. The way I worked before was to rush and quickly do things. The harder I worked the better I felt. I am not sure now if that was a me thing, as in my character, or an effect of feeling so lousy I now realise for a long period of time. Rushing to get things done released adrenaline which made me feel better and so alive!

In feeling better I have been planning a ‘get-back-to-work’ strategy but it was humiliating to realise that I cannot increase my potential by any more at the moment and that had a negative affect on me which also hasn’t helped.

However speaking to Tim Williams who does my Perrin Treatment I realise I have been jumping the gun.

I realise that the excitement of feeling better has pushed me to do far more than I should and it is crucial to the Perrin Technique to really be careful and not do too much. I think a good guide is to only do what you want, rather than what you should.

So I have asked my Cleaner back into my life! Hurrah!!! I am so happy now!

Just for clarity my symptoms during this phase of not feeling so good have been:
Brain dead, not thinking clearly, refusing invitations that are of the sitting eating, socialising, chatting type, very tearful, pushing myself to the limit to get a job done, forgetting what I was about to do, blaming everyone else for not understanding that I can’t do things, struggling with walking, forgetting to eat or drink and not bothering to shower going back to strip washing. My sleep has been good and my muscles have been behaving themselves.

I don’t blame doing too much on its own, I do think the lack of sunshine on my skin this year hasn’t helped. I hear what people say about ME and Vit D but I personally think it is the vitamin D delivered to the skin by the action of sunshine on the fat in our skin that is the essential element rather than a supplement, for this reason I never use sunscreens.

I have said to Tim Williams that my energy has improved but my brain has not caught up. However thinking about it more clearly now I have given in and am resting, I think I have been expecting too much from my brain during this getting better period.

Raymond Perrin does say it can take 2 years to get 80% better. It has been one year since I started the Perrin Treatment.

I am not good at working out percentages but I used to assess that I had two fairly good days a week before Perrin and I would say I have 4 fairly good days now if I discount this period of switching off.

To be fair to myself and the treatment protocol in the last couple of weeks I have not been pacing at all but getting up and getting on with the day – totally pushing myself to be as normal as possible.

24th September 2008
I told my Osteopath that despite not doing all the exercises and advice I was given by him to do at home, I am getting better.

I said: ‘I turn up here to you and lie down, you apply your treatment, I get up and go home and on top of that I rarely do my ‘homework’ that you gave me to do and I am getting better.’
(He wasn’t impressed which will prompt me to do the ‘stuff’’ today)
The point I was making is that this treatment programme is easy to do, very stress free and relatively cheap when compared to others and more importantly it works!

Since being diagnosed with ME well actually I was diagnosed with CFS and the NHS GPs will not call it anything else. I have been referred by them to a CFS/ME Occupational Health team, so I am assuming the GPs don’t mind me using the term ME when applied to myself.
Since being diagnosed with ME … what was I going to say? … O yes …. since being diagnosed I have learnt over a period of time not to push myself, to dismiss words like Aught To, or I Must Do or I Have To. I use words like I Want To or I Don’t Want To. (a counsellor friend mentioned that one)
It has been tricky because I always feel guilty or lazy if I don’t jump to and do what I aught. (‘the warta in magorka don’t taste like what it aughta’ comes to mind!)

But I find now that I actually Want To do a lot! And when I don’t want to do anything it isn’t because I am being lazy but because I don’t feel well. But sometimes I don’t realise that until the following day when I feel better again.

So with the above in mind, I am not going to put pressure on myself and stress myself out by adamantly adhering to some exercises.

However being a teacher of exercise I am totally aware of how stretches and exercises applied daily do help.

So I have to work between the two aspects. A need to do the work the Osteopath gave me and not apply stress to do it.

I find that I do do some of the treatment plan at some point during the day … because I Want To.

Anyway
How do I feel today?
Like dirt.
I always feel bad after a treatment and I had one on Monday this week.
But for the past two treatments I have been feeling worse for longer and start to feel better about 10 days before the next treatment is due.
However as my friends and family will testify I AM SO MUCH BETTER THAN I WAS. And that is something worth hanging on to.
I feel drunk whenever I wake. If I wake at 2am or 4am or 7am I have a cracking headache and neck ache and I feel terrible!

Which makes me think that Perrin has really got the answer to this ‘disease’. My liver is not coping, or my lymphatic system. Which is why I feel hung-over.

The Vorgel Milk thistle drops I take really do help! They are amazing. I take those because there is no fear of any allergens in them. They were advice from the Perrin Treatment plan – so you see I do do some of it!

So I sit up in bed (semi-reclined) to allow things to drain.
I drink my very strong black ‘proper’ coffee and eventually the pain dies and energy flows. Good stuff caffeine. To ward of the effects of coffee take with milk or calcium tablet. Caffeine needs calcium to be utilised in the body. So if you don’t have enough calcium in your diet, it is robbed from the body and so I think that is why caffeine effects some people so badly.

I am also coping better with allergens but I think I’d better write another article about that rather than put it here. I will put a link in to it when I have written it. Here is the link: Are you allergen free?

I hope all this helps you with your Perrin treatment. Please keep emailing or adding comments for others. I know that many reach a plateau with the Perrin and then feel they are not getting any better. Please go back to your Osteopath and discuss your symptoms with them again.

Some have been put off because their sessions were about 40 minutes and were reduced to 30 minutes without being informed. This is so typical of practitioners including myself. I tell the patient that the cost is per treatment and not per the time taken. Sometimes I am an hour with someone and sometimes only 20 minutes!! It all depends on the individual. I work from home and can afford to book people in for an hour so I have time to rest inbetween patients or take extra time. A practitioner in a busy practice has to stick to his/her time constraints. Chat to your practitioner about it, they really won’t mind.

Some people worry about the cost of the Perrin treatments. I think that it is the cheapest treatment for ME that I have heard of.
Do you ever add up what you spend per month on cheese? Do you think: I spend £8 a week on cheese (if you have a family you probably spend more) so that means £32 a month. And in a year that is over £380!!!
Someone told me that over a year they had spent ‘X’ amount on Perrin and it was a fortune to them.
You cannot weigh up the costs on a yearly basis but on an affordable monthly/weekly basis.
The Perrin Treatment is very affordable. And one would happily pay that amount if it was retail shopping or entertainment or mobile phone usage.

It is the NHS that was designed for us that should pay for this treatment so if you have gripes with costs, speak to your Primary Care Trust providers.

22nd September 2008
Is it significant I ask myself that this entry is 11 whole days after the last? And that in between that on the 13th my daughter got married? And the week before, my nephew got married? Was I so exhausted and shattered that I couldn’t write here for all that time?

The day was wonderful, exhausting, amazing, unbelievable and utterly gorgeous. My daughter looked superb, so beautiful.
The wedding had been arranged quickly simply because they are in love and that is what love does. So the help we received from friends and family was phenomenal. It still left an enormous amount of work to do. And the point of this entry is to say: “I did it.” I did the work. I prepared 12 litres of chili. I made the bridal bouquet. I sewed the petticoat for the wedding dress and made a garter out of my mother’s wedding dress. My sisters and I made the little bridesmaid’s dresses. And with help from my husband and sister, I hung some drapes with fairy lights inside in the ceiling of the marquee. We had 7 extra people staying that weekend and others in between. The last of the family left this morning and this is why I haven’t had the brain space to write anything since before the wedding.
Everyone helped but the interaction of chatting, cooking, ferrying food and chairs and extras to and fro would have normally sent me crying into the silence of my bedroom for days afterwards with a big pot of painkillers.
But I coped. Happily coped.
I am tired and a little brain dead but perhaps only a smidgen more than a ‘normal’ person after such a ‘do’!
I can’t thank and praise Tim Williams and his treatment using the Perrin Technique highly enough.

11 September
I had a Perrin Treatment about 3 weeks ago and booked another one for a week’s time. I am not sure I can manage a month between treatments it doesn’t seem to suit me and I prefer every fortnight.
But
It is difficult to assess.
Before my Perrin treatment any social event filled me with dread. The knowledge of the effects of travel, the knowledge of the effects of standing or sitting, the knowledge of the effects of chatting, the knowledge of the effects of every single aspect of it and finally the knowledge of the effects of the embarrassment of being taken home early because I simply couldn’t cope any more. Or the knowledge of the effects of being able to cope and the fallout of that a few days later.
Since July I have:
Travelled to Spain to take part in a HUGE celebration.
Singing on stage at that celebration and all the practicing that went before hand.
Being a functioning chatting individual at that celebration as well as dancing with the energy of my youth!
Coping with a 5 hour car journey in convoy with several cars between airport and event.
Coping … no not only coping but thoroughly enjoying myself with the feelings of youth and vigor!
Then a family wedding at the end of August and all the purchasing of clothes, cooking of food, putting up of relatives, and entertaining of relatives afterwards not to mention attending the wedding and dancing the light fantastic in my dancing shoes!
And the finale, the planning, plotting, listening, helping, supporting, more listening of my daughter’s wedding this Saturday! Yes my daughter wedding! And that would put a normal person into an early grave …

And yes here I am two days before the wedding sitting in bed, drinking coffee and writing on this website! So calm am I … before the BIG enormous day!

Have to go now – come back later!

12th August 2008
I am so sorry that it has taken me so long to update the diary.
To sum the past few weeks up I would say that I have been on a plateau of feeling marginally better but once the Perrin treatments got started again and hit home – felt fantastic. I had to go to a huge family do in Spain with hundreds of family and people and stuff going on which in the past would have sent me into a huge wobbly but didn’t phase me at all. The whole event from packing, to getting to airport in tandem (?) with 13 people and two wheelchair users, the flight, the hoo-haa in the baggage dept, the 4 cars following each other around Madrid to Jaen in Andalucia, the sleeping arrangments, the cooking, the clearing up, the helping, the party was all WONDERFUL! And I put that down fully and squarely to the success of the Perrin Technique and my Osteopath Tim Williams with all the other osteopathic techniques he applies.
I will come back to this entry later as I want to share some information I received recently which may help to give further insight to this peculiar illness – CFS/ME or ME-CFS.

19th June 2008
May was not a good month for me on the whole and I did wonder at one point if the Perrin Technique was working for me and whether to bother with any more treatments. If I thought about it, I felt the same as I was before I was diagnosed when I was working hard and wondering why I couldn’t cope, couldn’t sleep, and felt so ill all the time. If I went back to full time work now, would I be in the same state as I was before diagnosis and obviously (now I realise) quite ill?

Nowadays to do any work at all, other fundamental things do not get done. I don’t shower, I strip wash. I won’t do any shopping. I cook rarely if I am working. After working I won’t have much conversation and will go and lie on my bed in beautiful peaceful silence tapping away on my laptop or reading an Agatha Christie book for the umpteenth time.

But. It isn’t like that all the time. May was a bad month with an awful lot going on, family things, social things, work and highly charged emotional aspects.

My Perrin Technique appointments are now monthly and so at last I limped and struggled within myself and got to my appointment two weeks ago.

Two days later saw a totally different Marianne. Re-charged is the best description and I think I need a Perrin Technique every fortnight rather than once a month … perhaps.

I think it would help my analytical, detailed mind if I understood thoroughly what a Perrin Treatment did. I want to see the lymphatics clearing and getting straighter. If I could see that in reality I would have more confidence in what is going on in my body. So I have to look at the symptoms or lack of symptoms to understand that changes are taking place.

I am losing weight, slowly and surely and I know it is not from anything I am doing to actually work at losing weight.

I can eat spanish or french wheat flour products but not english flour (UK flour is canadian wheat that has had more gluten added). I can eat organic wheat (is that organic canadian wheat? don’t know) and Spelt flour products. I do not eat them every day and try and ike it out to once or twice a week. It took a few weeks to develop but I noticed when I was in Spain for my mother-in-law’s funeral that I ‘got away with’ eating a slice or two of their bakery bread. The commercial pan au chocolate did make me ill. When I got home I ate the odd slice of organic bread, the commercial brands of bread did make me feel ill. As time went on and the enzymes were produced in my body to assimulate bread I find I am more tolerant but I cannot eat ‘normal’ bread. I wonder if it is the additives and preservatives that make me ill?

I asked Dr Perrin at his seminar in Bridport if he considered allergies with his treatment and he said that one should never totally give up the product you suspect being allergic to, because the body will stop producing the enzymes to digest and assimulate the product. I grinned with glee, ‘Can I eat bread again then?’ Well no, he said, be careful, you should speak to Dr Sarah Myhill about re-introducing foods.

Typical me, I thought, I can’t pay another practitioner more money. I’ll introduce the food myself. I’ve made a few mistakes which digestive enzymes, pain killers, calcium and fruit in the form of organic apples and pineapples have helped to solve.

Here is a list of my improvements, not extensive and I’ll add them as I remember more but I have to leave this area now where I am typing:

• My thinking is poor ie in remembering things and it seems worse than before. My concentration on one task is better. Much better.

• My aches and pains are much less.

• My confidence to say Yes to things is much better. Before it was always: ‘Better not do that or I will suffer later.’ Now I think: ‘YES! Definitely do that.’ and not worry about possibly feeling bad later.

• My sleeping is better, but it did get better anyway with the calcium and magnesium supplements. I would say that hours of sleep are still 5 – 6 and 8 on some occasions. But that is sleep. Solid. Great!!

June is proving to be a much better month and I am coping with far more. My son who I have not seen for a while could see improvements and that I was able to do far more without having to disappear and go and ‘hide’ and rest from everyone. But what seems to happen is that I keep going, feeling quite ‘normal’ and then suddenly with no warning I cannot take anymore. Which comes as a surprise to me and to those around me as it seems to come out of nowhere. But up to that point I had been feeling normal for some hours, which is unusual and so an improvement. But I had done far too much at that particular time and suddenly energy left and symptoms in the form of a cracking headache, unable to articulate, unable to move flooded in.

The tricky bit now is maintaining pacing when you just want to go go go. So in this getting better stage, I must be careful and continue to pace myself.

16th May 2008
I have just taken 2 Anadin Extra the only painkiller I can tolerate and that actually works.
Thought: This is a first for a while. I can’t remember the last time I took painkillers. Perhaps 10 days ago? This is definitely an improvement!
I know I do feel better, but it is like I am a low energy light bulb emitting a dull light on so called bad days. Resting does not emit any extra energy, in fact resting makes me feel fidgety and almost worse if it is longer than 10 minutes. My better days continue to be fantastic and I am able to do far more than I ever have done in the last 5 years since being ill. I have to admit that much pacing is put in place automatically. For example I had a very busy weekend last which means I have not been out all week until today – Friday. Thankfully my daughter has been here to buy shopping and cook supper. However even though I have been home-bound I have still been able to work (pacing) and at last hem the curtain that has been waiting since christmas for me to finish. I don’t feel so great this week I have to say but it is the hayfever season – so not surprising but those symptoms are so much less too!!
O and something I have been meaning to mention is that I am eating bread again. I am carefully selecting the type of bread or I make my own from Spelt flour. I do get some symptoms but O they are so few and less potent than before! However my problem with eating bread is that it is an easy meal solution and I find I am not eating as much fruit as before. And not eating fruit is I think one cause of me not feeling so great as I have been.

29th April 2008
Friday 25
10am Exercise Class
12:30 Pick up husband from airport
13:30 Shopping in Exeter
15:00 Home and rest for that aftermoom and evening!

Saturday 26
Cooking and clearing house for ‘party’ on Sunday
Cook joint for another party on Saturday and prepare a salad
Nearly lost the plot with the joint because it was heavier than I realised and I had not allowed enough time … several phone calls reassured.
Made a gltuten free dairy free birthday cake
Went to party and didn’t get home until 2am

Sunday 27
Daughter’s birthday breakfast and receiving of visitors and more food and cooking of a large ham Nigella style. My husband loves her – I laughingly call her Mrs Chocolate Bosoms.
Out to field to play rounders. Yes I did play but had forgotten how to throw so was a useless fielder.
Came home to mega delegation of tea-making proceedings
I coped with the toing and froing.
I coped with all the chatter and noise
I coped with all the decision making
I felt me again!!

There was a tiny period of lying down flat in the lounge in a corner where no-one noticed – hopefully.

MONDAY MORNING
No I was fine!! Took husband to the station. Helped a lady who had fallen over in the village. Cleared up the house, hoovered etc and had a client for massage in the evening.
Tired during the afternoon – must admit.
Daughter bought and cooked supper.

Tuesday today – ah ha – OK I am tired. BUT I feel so triumphant! I would NEVER ever have coped with a weekend like that a few months ago.

And another thing. My big lumps like horns on the back of my head, those big painful occipital glands are non-existant on the left and tiny on the right!! WOW! Something is definitely happening.

23rd April 2008
I had to cancel my appointment last week because I was not well – I am not exactly sure what was wrong. I had had a very busy weekend, then my husband got a virus and I had been bitten by a spider. I know it was a spider because I have had spider bites before when I was in Spain. The area would swell and be unbearably itchy and whoever was bitten would feel very ill with it. I woke up at 5am on the morning of my appointment and thought: “I can’t go, I can’t do this, I don’t feel well.”
So it was either having done too much, the effects of my husband’s virus, the spider bite or all three. I sent my Osteopath a text to apologise and collapsed back into bed again and slept until 11am (unheard of for me!). Life has been a real struggle quite frankly until yesterday and today and I am beginning to feel more like the ‘me + Perrin Technique better’ again. I haven’t dared make another appointment until I felt confident that I was as well as could be expected.
Must tell you something funny. I had to ring a company about some new tyres. Naturally I had to take my car out to him. He asked if I knew where they were situated? The way he asked the question put me on my mettle, I thought carefully; I could mentally hear the Countdown dongs and the seconds going. Did I know the answer? “Behind Rainbow Stores!” I blurted out. I felt so pleased with myself! My brain appeared to be working again! ‘Well done.’ he said and he wasn’t being patronising.

14th March 2008
I have this frison, this trickle, this flow of energy sparkling through. It makes me feel that I have energy to call upon rather than the feeling of: no-energy-so-please-don’t-move-your-body-or -your-heart-will-stop-beating.
Today I hurt and yesterday I hurt even more and had what I call a floppy day but it wasn’t totally non-productive and headache packed and sick and ill as floppy days for me tend to be. Yesterday was a pain-killer medication day to get me moving and this tiny little trickle of something so undefinable I didn’t recognise it as energy. Yesterday was a tearful day when everything looked heavy and nothing looked nice and then this minute shaft of sparkle.

I had a Perrin treatment on Tuesday and on Wednesday I taught an exercise class. Say-No-More!

I want to share with you all a theory my Osteopath told me about illnesss, although he was referring to CFS/ME. The following are my words not his.
He sees when he is treating people that there is a layer to peel off before actually getting down to treating the illness itself.

Often this comes as a shock to people as it is then once the first layer has been removed and the second illness layer revealed that they often feel very ill and worse and then assume that the treatment isn’t working and go and seek alternative treatment.

I think that this theory is probably what most therapists deal with when treating sick people, especially chronically sick people.

We have all heard therapists say: ‘You will probably feel worse before you feel better.’ But to the lay person, to the person being treated this isn’t very helpful to hear or educational.

When my Osteopath told me this I remembered how terrible I felt once I was diagnosed with CFS/ME. Until he spoke I had never understood why once I accepted the diagnosis and finally surrendered and gave up work that I almost collapsed and became bed or settee bound.

The first layer was being removed. The Coping Layer. The I-need-to-work-harder-then-I-will-feel-better Layer. The I-AM-NOT-ILL-I-AM-MRS-HEALTHY-AND-DON’T-DO-ILL Layer.

I think I knew I was ill, I just refused to admit to it because I had to cope (I would think as I popped another Vitamin C tablet or did some more exercise and stretches to help the pain in my back and neck.)

Once this Layer that had been my soul-mate had been removed, I felt naked and exposed to a Layer I didn’t recognise, a person I suspected was there but didn’t want to admit to. Because I didn’t recognise this person I couldn’t identify them and I didn’t want to know, I suspected it was someone horrible, I didn’t understand and I wanted my Coping Layer back – my safety net.

That second Layer is not necessarily me. Which is why for some, NLP helps so much. And why Cognitive Behaviour Therapy (CBT) helps. This second Layer appears to be the mechanisms that got us ill. The stuff taken on board from our peers, the misconceptions of our learning.

From a physical therapists point of view – which is what I am – a body that cannot drain its toxins gets ill. We know this hence all the detox diets.

From an anatomical point I know the body is designed to get rid of toxins and has many mechanisms to do this. So I have often wondered why mine isn’t very effective.

When our bodies first experience illness toxins build up in the system and because the body is working extra to remove things it is not working optimumly in other areas.

I now know from experience that when my immune system has kicked in to work harder, my cognitive skills are compromised and my mental abilities are surpressed.

Equally when we face compromising or adverse situations for the first time our immune system is surpressed because of mental unhappinesses and we cannot ward off disease or infections.

I think that this is why some cognitive therapies like NLP help with CFS/ME. But I do not agree with Phil Parker and his theory that CFS/ME people remain exhausted because they are mentally boosting their adrenaline by the guilt of feeling ill and not being able to do anything about it. That is my understanding of his theory of the adrenaline loop.

I know for a fact that that isn’t the case with me because I didn’t feel guilty about being ill I coped and I think Phil Parker’s adrenaline loop theory ignores the Coping Layer that CFS/ME people have and recognise as having – those who I have spoken to at any rate.

I suppose my ‘fear’ with Phil Parker’s treatment is that he is encouraging the Coping Layer and making it thicker and just covering up the illness itself. His explanation of his treatment to me in his emails seems to suggest that with his tightrope analogy. I am sure I will be told I am very wrong but this is why I won’t and will not do a treatment programme like his.

However I do know that NLP or CBT or Counselling is excellent alongside a physical therapy. Read on – hopefully all is explained more thoroughly.

In the last month I have experienced a wonderful feeling of the sparkle of energy through my body on intermittent days. This energy feeds me. Instead of knowing that I can’t pick up a shirt because it will exhaust me, I know I can go out into the garden and pick up a pair of shears and use them.

For me, my CFS/ME is like turning on a torch and there is no response from the battery – there is no light. I can feel it is through a physical blockage which is made so much worse when more toxins are being forced through. Hence the feeling of exhaustion and the frustration: “O I’ve done too much!”

Now there is a trickle of juice in the battery and the light is so dim but evident. Some energy has been released because the toxins are clearing and allowing it through. That is what it feels like.

During this past month the battery in my body is stronger and the light brighter. It doesn’t last for very long but it is there.

Which is why I agreed to take an exercise class. Hopefully not a mistake. Hopefully not a relapse in a few weeks time. We shall just have to see.

I did take an exercise class a year or so ago. The class I teach is very, very gentle and the design is to help back problems. But at that time it exhausted me and so I gratefully gave up.

This week when I was going through the routine at home I had this sparkle that I have not experienced before since being ill, since before I was ill. I can’t explain it but suddenly all heavy exhausted feelings went. I was the me I had been 7 or 8 years ago before succumbing to shingles from which I realise now, I never felt well.

That fabulous feeling didn’t last but no matter. The fact that it happened is good. So good, because since being ill I have never experienced it before. And the fact that it has happened several times and got stronger is extra good. It tells me that a healthy energetic layer that is me, is there and is slowly getting stronger as it works more efficiently.

This is why I think the Perrin Treatment has all the answers – for me, I really do believe that Raymond Perrin has the theory right. It makes perfect sense.

Understanding and education is the key to getting better. When something makes sense it has such a positive impact. Dr Raymond Perrin is totally honest with his theories, where they are based, and his treatment programme.

This is why I explain the Layer Effect. It is like an Onion, the dry, brown, hard, tough skins need to be removed to get to the succulent, juicy layers underneath.

Once the juicy layers are revealed it can be seen what is required to feed the heart of the onion to keep it juicy and succulent.

It may be that once we are better we will need continual NLP or some such programme to maintain ourselves not take on board absract negatives from our peers that may be surpressing our immune systems and causing the backlog of toxins that made us so very ill.

If you imagine a engine with all its moving parts slightly out of alignment. Imagine that the oil is our mental capabilities our NLP. Would pouring oil all through the engine re-align the moving parts? If the parts are only very slightly out of alignment, the oil may encourage smoother movements. Eventually though that very oil will clog the system and the misalignment will get worse.

The most effective way to align an engine is to physically move the parts yourself and re-align. Then use the oil.

I believe it is the same with the human body. The internal parts as well as the external need realignment when chronic illness presents itself.

I have to stop now but may come back to add or re-edit.

I hope this helps. I hope it inspires confidence with your treatments and getting better programme. This is what helps me and it may not help you. We all have to discover our own way.

The Beginning of my Perrin Treatments

The Perrin Clinic

My Osteopath Tim Williams

Friday 16th November
My first treatment with Tim Williams an Osteopath trained in the Perrin Technique.

My husband came with me for which I was very grateful as he was able to drive home while I comatosed in the passenger seat afterwards.
The treatment itself is extremely gentle and involves checking certain points of sensitivity found in CFS/ME people and the observation of the thoracic spine and the relationship of each vertebra with the other; mine was classic for CFS/ME as it is flat with the base of the cervical spine protruding if that makes sense.

Tim did mention that Perrin found that the points of sensitivity were so consistent with all his CFS/ME patients that it could be used as a tool for diagnosing CFS/ME in the future.

The massage is a little personal which is why one should attend with a close friend or relative.

The massage involves draining the lymphatics but using a slightly different technique to other lymphatic massage processes. The lymphatic system needing attention is found in the chest hence the personal nature of this particular massage.

The thoracic muscles of spine are also treated along with the muscles of the shoulders and neck using Osteopathic methods called Cranial Osteopathy which is extremely gentle and involves no clicking or crunching.

The first treatment because of the consultation and observations lasts about an hour and a half but subsequent treatments are about an hour.

I did feel totally wiped out and slept for the rest of the afternoon when I got home and slept well that night.

Friday 23rd November
The treatment was much the same as before with more attention to my neck and shoulders. I did not feel so wiped out. For the first time in years the nagging toothache type pain in my shoulder has disappeared.

The effects during the first week after my first treatment and the following week seemed to result in me feeling very well and sustaining more energy for activities. But it is early days and too soon to tell.

Friday 30th November
My appointment was cancelled and rescheduled for the Monday 3rd December.
I had to cancel this date as well because I was feeling particularly ill. However in cancelling my malaise seemed to snowball and got worse as the week wore on.

Monday 10th December
I was so looking forward to this appointment and all went well although I did feel wiped out afterwards. Didn’t really feel better until today – Wednesday 12th December.

My overall impression is that this treatment is doing something. Whether it is because of the positive benefits of talking to someone who understands CFS/ME or because of the treatment itself time will only tell. I have delayed future appointments until after christmas now but already am regretting that decision – but it isn’t set in stone so I can probably rearrange.

Some side-effects appear to be: extreme itchyness in the legs especially behind the knees which has gone now; a slight dripping of mucus in the throat from the sinuses, at first with a very strong taste and now not so strong. Runny nose after doing the exerices. Totally forgot that I had v painful wrists and achy arms and they seem to be so much better – Tim did do something to them too – thank you Tim!

4th January 2008
Happy New Year! I purposefully have not had any treatments during the christmas period and have a session booked for next week which I am looking forward to. Christmas went very well and was the best ever even though we had a house full and several parties. It was a busy time. However because there were so many adults around, I could climb into my nest in my bedroom and disappear if I needed to. I found the stretches I have been told to do extremely helpful as they do feel like they are releasing something and allowing a ‘flow’. I feel that the advice I have been given, the stretches and routines I have been advised to do and the treatment itself have helped enormously with getting through the christmas and new year celebrations. I hope now to tackle the Perrin Technique fully and properly. So watch this space!

7th January 2008
My first treatment with Tim since Christmas. He included other techniques I have not had before. I came home and felt very well. Not drained at all but not particularly energetic. I also felt more confused than normal. But my overriding impression is that the treatment seems to be keeping me on one level. If I compare my energy to a light bulb:
100 watts = healthy person without ME
60 watts = person with moderate ME
30 watts = person with severe ME
10 watts = person bedridden with ME

So before the Perrin Treatment my energy was yo-yoing between 60 watts and 10 watts.
While having the treatment my energy is a flat level of 40 watts … I think. It is the first time I have felt consistent over anything.

Today is not a good day but there is a bug (doesn’t the UK know it!) going around and I feel sick and tired most of the time. My son has it now and is in bed. My daughter had the head cold part and feeling sick but seems better now.

I am keeping my self free of succumbing completely to the bug by:

• eucalyptus and olive oil around my face, neck, chest and back
• tea-tree and dead sea salt bath (when I have the energy)
• ingesting colloidal silver (antibiotic, antiviral, antifungal)
• antibacterial wet wipes in the loos and bathroom to immediately clean the loos after use. I also use them to clean my hands which is a bit extreme and will dry and possibly make the hands sore.
• eating oranges and drinking orange juice not from concentrate.

Because of feeling ill and the obvious germs in this household now that my son has succumbed I cancelled my treatment with Tim Williams this morning.

Today is January 30th 2008
I had a treatment with Tim yesterday. I had one previously on the 22nd Jan too.
One weird side-effect of these treatments appears to be thoughts not considered for some time coming to the fore-front of memory and making me cry. I am not sure if the treatment is bringing out suppressed ‘stuff’, or whether it is the treatment making me very tired and brain dead so that I am not coping as well as I should be and still expecting to do more than I can; the effect of all that making me tearful.
Will complete this later … gotta go now.

Wednesday 13th February
This will be another quick entry. I am on fortnightly treatments now. The last one went well but seemed to leave me with a stiff shoulder but I noticed that when I look in the mirror my shoulders are more in line with one another. The pain in that shoulder is almost gone. I do believe I am doing more, but I am also shattered by the end of the day. Totally wiped out by 5 or 6pm. Sleep isn’t too good if the day has been too busy. However this is all an improvement on before. I am saying “Yes” to things instead of a wobbly “O I don’t know. I don’t think I can.”
Very interesting meeting with Dr Perrin in Bridport on Monday last. Will be writing all about it as soon as. He reckons that with taking his Perrin Technique, it will take a good year or two before one will be ‘better’. He does not offer cures. The hope is a cure and many of his patients have been competely cured but there are no guarantees.
For me his research is the key. And that is why I like this treatment. It comes with research, papers and books being written. And not only that, it makes sense. Anyway more about that later.

Thursday 28th February 2008
On Sunday last (24th February 2008) I felt so well. Again on Monday I felt even more well. If anyone had asked me on those days I would have said: “I’m cured!” Well, maybe I wouldn’t, I knew it was early days and time would tell. Which it did on Tuesday – I crashed. Wednesday I felt so ill. Today I feel a little better.
What conclusions have I drawn from this?
1 During the well period I noticed I could think straight. I noticed that nothing phased me, I was rational. I could plan and plot my day and get on with it. My muscles did not complain, my breathing was normal, I didn’t sweat on the slightest effort, my heart did not pound. I realised that no training programme had done this, no psychiatry. All I had had was the Perrin Technique, Perrin’s exercises and my usual cocktail of Omega Oils, Calcium and the Milk Thistle which Perrin advises.
2 That when my muscles do too much, my brain suffers and vice versa but I knew that. It just confirmed it for me.
3 While I have boomed and crashed before, my boom times were never like those two gorgeous days. I had never experienced such beautiful days as they were before. Monday was the best day, Sunday although good, I did experience exhaustion – simply a need to sit down but without all the other symptoms that normally attend it.
I really feel very positive about the Perrin Technique. I can feel the lymph draining. I can feel my brain clearing.
On Tuesday 25th feb, I had another appointment with Tim for the Perrin Technique. I was feeling terrible and had a cracking headache. I forgot to tell Tim about the headache. After the treatment I felt like I was floating. The headache completely gone. I floated home and I floated around the house. But then I got busy with something, slept badly that night and felt lousy the following day. I think there was a double whammy going on the following day, recovery from the effects of the treatment and still getting over feeling ill anyway.
I remain very positive about this treatment. Something is happening. 🙂

14th March 2008
I have this frison, this trickle, this flow of energy sparkling through. It makes me feel that I have energy to call upon rather than the feeling of: no-energy-so-please-don’t-move-your-body-or -your-heart-will-stop-beating.
Today I hurt and yesterday I hurt even more and had what I call a floppy day but it wasn’t totally non-productive and headache packed and sick and ill as floppy days for me tend to be. Yesterday was a pain-killer medication day to get me moving and this tiny little trickle of something so undefinable I didn’t recognise it as energy. Yesterday was a tearful day when everything looked heavy and nothing looked nice and then this minute shaft of sparkle.

I had a Perrin treatment on Tuesday and on Wednesday I taught an exercise class. Say-No-More!

I want to share with you all a theory my Osteopath told me about illnesss, although he was referring to CFS/ME. The following are my words not his.
He sees when he is treating people that there is a layer to peel off before actually getting down to treating the illness itself.

Often this comes as a shock to people as it is then once the first layer has been removed and the second illness layer revealed that they often feel very ill and worse and then assume that the treatment isn’t working and go and seek alternative treatment.

I think that this theory is probably what most therapists deal with when treating sick people, especially chronically sick people.

We have all heard therapists say: ‘You will probably feel worse before you feel better.’ But to the lay person, to the person being treated this isn’t very helpful to hear or educational.

When my Osteopath told me this I remembered how terrible I felt once I was diagnosed with CFS/ME. Until he spoke I had never understood why once I accepted the diagnosis and finally surrendered and gave up work that I almost collapsed and became bed or settee bound.

The first layer was being removed. The Coping Layer. The I-need-to-work-harder-then-I-will-feel-better Layer. The I-AM-NOT-ILL-I-AM-MRS-HEALTHY-AND-DON’T-DO-ILL Layer.

I think I knew I was ill, I just refused to admit to it because I had to cope (I would think as I popped another Vitamin C tablet or did some more exercise and stretches to help the pain in my back and neck.)

Once this Layer that had been my soul-mate had been removed, I felt naked and exposed to a Layer I didn’t recognise, a person I suspected was there but didn’t want to admit to. Because I didn’t recognise this person I couldn’t identify them and I didn’t want to know, I suspected it was someone horrible, I didn’t understand and I wanted my Coping Layer back – my safety net.

That second Layer is not necessarily me. Which is why for some, NLP helps so much. And why Cognitive Behaviour Therapy (CBT) helps. This second Layer appears to be the mechanisms that got us ill. The stuff taken on board from our peers, the misconceptions of our learning.

From a physical therapists point of view – which is what I am – a body that cannot drain its toxins gets ill. We know this hence all the detox diets.

From an anatomical point I know the body is designed to get rid of toxins and has many mechanisms to do this. So I have often wondered why mine isn’t very effective.

When our bodies first experience illness toxins build up in the system and because the body is working extra to remove things it is not working optimumly in other areas.

I now know from experience that when my immune system has kicked in to work harder, my cognitive skills are compromised and my mental abilities are surpressed.

Equally when we face compromising or adverse situations for the first time our immune system is surpressed because of mental unhappinesses and we cannot ward off disease or infections.

I think that this is why some cognitive therapies like NLP help with CFS/ME. But I do not agree with Phil Parker and his theory that CFS/ME people remain exhausted because they are mentally boosting their adrenaline by the guilt of feeling ill and not being able to do anything about it. That is my understanding of his theory of the adrenaline loop.

I know for a fact that that isn’t the case with me because I didn’t feel guilty about being ill I coped and I think Phil Parker’s adrenaline loop theory ignores the Coping Layer that CFS/ME people have and recognise as having – those who I have spoken to at any rate.

I suppose my ‘fear’ with Phil Parker’s treatment is that he is encouraging the Coping Layer and making it thicker and just covering up the illness itself. His explanation of his treatment to me in his emails seems to suggest that with his tightrope analogy. I am sure I will be told I am very wrong but this is why I won’t and will not do a treatment programme like his.

However I do know that NLP or CBT or Counselling is excellent alongside a physical therapy. Read on – hopefully all is explained more thoroughly.

In the last month I have experienced a wonderful feeling of the sparkle of energy through my body on intermittent days. This energy feeds me. Instead of knowing that I can’t pick up a shirt because it will exhaust me, I know I can go out into the garden and pick up a pair of shears and use them.

For me, my CFS/ME is like turning on a torch and there is no response from the battery – there is no light. I can feel it is through a physical blockage which is made so much worse when more toxins are being forced through. Hence the feeling of exhaustion and the frustration: “O I’ve done too much!”

Now there is a trickle of juice in the battery and the light is so dim but evident. Some energy has been released because the toxins are clearing and allowing it through. That is what it feels like.

During this past month the battery in my body is stronger and the light brighter. It doesn’t last for very long but it is there.

Which is why I agreed to take an exercise class. Hopefully not a mistake. Hopefully not a relapse in a few weeks time. We shall just have to see.

I did take an exercise class a year or so ago. The class I teach is very, very gentle and the design is to help back problems. But at that time it exhausted me and so I gratefully gave up.

This week when I was going through the routine at home I had this sparkle that I have not experienced before since being ill, since before I was ill. I can’t explain it but suddenly all heavy exhausted feelings went. I was the me I had been 7 or 8 years ago before succumbing to shingles from which I realise now, I never felt well.

That fabulous feeling didn’t last but no matter. The fact that it happened is good. So good, because since being ill I have never experienced it before. And the fact that it has happened several times and got stronger is extra good. It tells me that a healthy energetic layer that is me, is there and is slowly getting stronger as it works more efficiently.

This is why I think the Perrin Treatment has all the answers – for me, I really do believe that Raymond Perrin has the theory right. It makes perfect sense.

Understanding and education is the key to getting better. When something makes sense it has such a positive impact. Dr Raymond Perrin is totally honest with his theories, where they are based, and his treatment programme.

This is why I explain the Layer Effect. It is like an Onion, the dry, brown, hard, tough skins need to be removed to get to the succulent, juicy layers underneath.

Once the juicy layers are revealed it can be seen what is required to feed the heart of the onion to keep it juicy and succulent.

It may be that once we are better we will need continual NLP or some such programme to maintain ourselves not take on board absract negatives from our peers that may be surpressing our immune systems and causing the backlog of toxins that made us so very ill.

If you imagine a engine with all its moving parts slightly out of alignment. Imagine that the oil is our mental capabilities our NLP. Would pouring oil all through the engine re-align the moving parts? If the parts are only very slightly out of alignment, the oil may encourage smoother movements. Eventually though that very oil will clog the system and the misalignment will get worse.

The most effective way to align an engine is to physically move the parts yourself and re-align. Then use the oil.

I believe it is the same with the human body. The internal parts as well as the external need realignment when chronic illness presents itself.

I have to stop now but may come back to add or re-edit.

I hope this helps. I hope it inspires confidence with your treatments and getting better programme. This is what helps me and it may not help you. We all have to discover our own way.