Sunday, 29 December 2013

Lymphatics and trampolines

I have made it through Christmas without any major relapse - Hooray.  Hope you all managed to too.
We all know that usual pacing strategies tend to go out of the window for major events like this, so it can be a bit hit and miss.  Infact although there is a lot of stress and activity leading up to the Christmas period, my step count actually during the two or three main festive days was way lower than usual.  Lots of sitting around with the family playing games or chatting around the table, and MUCH more tv viewing than normal.  So, much more static than a normal day around the house.  These quiet days made it easier for me on the 27th when the females of the family have our traditional shopping trip to the sales.  My step count that day topped 10,000 which is a huge day for me and requires days of doing nothing either side.  I'm coming up to 48 hours post this exercise, so could still have some sort of reaction, but I have been sensible and so far feel okay.
Being sensible has meant early bed times and although it sometimes annoys me during the year, I know it's a good strategy and just do it, but at Christmas I find it more annoying.  I want Christmas days to stretch out for as long as possible, to last as long as they can.   It already passes too quickly, if you throw in a 9pm bed time the days feel prematurely clipped and pass all too speedily.

Father Christmas was kind enough to deliver a trampoline for Ben.  He was delighted.  I have an intention to try and use the trampoline too (gently obviously).  My physio has suggested using a trampoline before, but now I have easy access to the equipment I am going to incorporate it into my routine.  It is possible apparently to stimulate the lymphatic system even by bouncing without your feet leaving the trampoline - so very gently, and this is what I will start with.  I'm also hoping it will help stop the disappearance of my thigh muscles, which have diminished in a big way in the past few years.  This link explains why bouncing helps the lymphatic drainage process.  The Perrin technique and my improvement through it have already proved to me the importance of helping lymphatic drainage in ME.  I fully expect to feel bad after using the trampoline and would see this as a good sign that it's doing it's job initially.

I have decided that 2014 is going to be the year of organisation for me.  I expend too much of my valuable energy by not being organised enough and I would like that to change.
A good example of this is food.  On a week when I am organised I have all the meals planned out in advance, I do my on line shop, and each day I know what I'm cooking and what needs doing, it works soooo well!  Why don't I do that all the time????  I don't know why, its definitely easier, it just takes a bit of planning, planning that I need to prioritise.
I'm also going to go shopping this week and buy ALL my birthday cards for the year.  I will have them all ready, rather than running around like a headless chicken at the last minute and expending more energy through unnecessary activity and stress.  Anyone got any other good ideas I can take on board?

Saturday, 21 December 2013

GP visit

On Thursday morning I went to see my GP who I haven't seen for a while.  I told him that I was feeling things had been sliding backwards since the summer and asked if he would refer me to see Dr Annice Mukherjee an endocrinologist at the Salford Royal hospital who I had heard had a special interest in women with ME and their hormones.  My GP was very kind and told me of his concerns about sending me off on a wild goose chase and how it is easy to constantly be chasing "specialists", but I explained that feeling that I am proactively doing something towards my recovery is the only way that I can deal with this situation mentally.  What is the alternative???  To do nothing???  He seemed to appreciate this standpoint.
He did make a referral for me for which I am grateful.
On Thursday afternoon, I went to see a homoeopath to have some food intolerance allergy testing done.  She concluded that I had strong reactions to Tea and coffee and mild reactions to wheat flour, gluten and watercress!  I haven't had a cup of tea or coffee for four years now, so eliminating them will not be and has not been a problem.
The build up to Christmas has been pretty full on, but finally today, I feel pretty on top of it.  After a rush of children's activities and Christmas socials we now have a quiet weekend and I am ready for it.  I need to conserve my energy for a family festive trip out on Monday.

Thursday, 12 December 2013

Ignore me, i'll get over it.

It's been almost a month since my previous post.  That's not because there hasn't been anything happening, but more because I'm just not quite sure what to say.  Things are still very up and down and probably more down than up at the moment.  I just don't know what to think.
I've had various appointments in that month and felt varyingly better for a short while afterwards, but generally things are a little upside down.
I've spoken to my gastro doctor about the things on my blood tests that DR Myhill thinks were significant and he just wants me to have them repeated before I see him next to see if the particular readings are still high.
I've had an almost constant cold sore either on my mouth or in my nose and my fair share of mouth ulcers.  It just adds to that general run down feeling.
I've also been told this month that I have posterior blephoritis, the meibomiam glands on my eyelids aren't working properly.  I guess having sore eyes hasn't helped my general feeling of wellbeing.  I have started treating it and it is improving.  
I've cancelled the blood test I was due to have to reanalyse my mitochondrial status, I don't really want to know.  The original idea was to give myself a boost by seeing how much I had improved since first being tested three years ago - it's going to have to wait.
I've also been having lots of hot flushes and have only had two proper periods this year (and two very feeble attempts!), which makes me think there is definitely something hormonal going on.  I am peri-menopausal and I think this is effecting my ME symptoms.  With this in mind I have an appointment with my GP next week to ask if he will refer me to see Dr Annice Mukherjee a consultant endocrinologist in Salford Hospital who has a special interest in ME and hormones. She was the guest speaker at the Perrin conference recently.  It's a long way to travel, but I just want to see someone who I feel  knows more about my condition than I do! 

The above probably sounds pretty down beat and moany, but I need to document how I am right now as it's easy to forget.   It's all just a huge inconvenience that's getting to me a bit at the moment, but hopefully in 3 months time I'll be able to read back and see how much things have improved and take some pleasure from that - I feel unsure about typing that even as I put it, I'm not sure I believe it, which just goes to further illustrate my current state of mind.

Ahead of me  - a rush of activity for the Christmas period, most days with something to do or somewhere to go.  It's going to take careful management.

Wednesday, 13 November 2013

Moving in the right direction

Finally feel like I've turned a corner, feeling much better today, a bit more back to my normal self and I've done a bit of driving and socialising today and coped well,which has been good.  Not sure how much of that I can put down to yesterdays Perrin treatment - I certainly slept well after it which is unusual, I normally sleep worse the night after a treatment, or, whether it's that my body has  just had the time that it needed.
Here's today's WEGO question:

Write about how being a patient or caregiver has changed you. How have your goals changed? Have your values changed?

I dislike the word "patient", but it's quite pertinent really, you can't rush recovery, you have to be "patient" and this is something that I have had to learn.  This whole situation has made me much more reflective and that's not a bad thing providing I am using that reflection positively to help me move forward.  
 It's made me take seriously what I feed into my body and how I fuel it, and realise how important it is to nourish yourself physically and emotionally.  As a busy parent it is easy to put everyone else's needs first, but it is critical to look after our own needs.  This illness has taught me how much I took good health for granted AND how I have to take responsibility for my own wellbeing.
It has curbed my activity enormously and created lots of frustration, but it has also slowed my life and my activity, this creates more time to enjoy and be mindful of what's going on around me.   More snuggly movie afternoons on the sofa with my son, more evenings at home with the family.
I don't think my values have changed, but my goals are now so much more immediate, it's about achieving small steps forward and maintaining them, building on the little steps  until they accumulate into something bigger, that one big goal of recovery.

Tuesday, 12 November 2013

Perrin Technique gives me some focus

Today is ten days post the relapse that I had last week.  I do feel a bit more chipper today, but still no where near to my baseline "normal". I haven't done anything I haven't had to for those 10 days.  Still,  I had to cancel a trip out last night and a day out I had planned for today! I've cancelled a trip out I was going to take my son to on Friday and I've cancelled some mitochondrial blood tests I was going to have done on Thursday.  It's a case of battening down the hatches and sitting this one it until it turns around.  I am trying to look after myself and nourish my way back.

Today I had a Perrin technique appointment.   As well as the treatment itself, these appointments are always useful in terms of discussing what's been going on and also plotting some action points going forward.  This time I am to focus on diaphragmatic breathing.

Thanks to Sue from  Learning to live with CFS for bringing to my  attention the WEGO Health 30 days, 30 posts challenge.  As part of American National health Blog Post Month they have issued 30 topic headings (one for each day) for health bloggers to use throughout November.  Anyway as things on my blog have been a little negative for this last week or so I thought this little challenge might be a good distraction.  I'm joining in a little late, but here goes with today's topic:

Name 3 songs that you can listen to that get you out of a low point or lift your spirits.

1) Elgars cello concerto - I've loved this piece since I was a teenager, it's my all time favourite piece of classical music.

2) Yer So Bad - Tom Petty

3) My Rollercoaster - kimya dawson

Sunday, 10 November 2013

Longer than normal recovery

My last blog post finished quite positively - I'd had a bad day Sunday but then felt better Monday, but as the day went on I started to feel worse and by Tuesday I was back in bed again.  This has been my worst week probably in the last two years.  I haven't done anything all week, poor Ant has been out at work during the day and doing everything at home when he gets back.  I've felt very weak.  My thighs just don't seem to have any power.  This is the first week I can remember for a long time where I've actually had to ask friends for help.  I hate the thought of having to do that, but people often offer and this week I needed the help.
 I managed to get an appointment with my cranial osteopath for yesterday and Ant drove me down there (it's about 50 minutes away by car).  My diaphragm and sacrum had locked up and he supects that my body had been feeling stressed for a while.  The result of the treatment meant another afternoon in bed when we got home.  When I awoke this morning, I had slept well and my body felt calmer, but still weak.  I didn't make it down to the cenotaph in the village this morning, something we normally all do as a family.  So, it's been another quiet day of recovery today and I hope that tomorrow will be the start of a better, stronger, week.

Monday, 4 November 2013

Swings in energy levels

A very busy week last week topped off with a late night party on Saturday finally got the better of me.  I spent the whole of yesterday in bed, with a brief interlude to come downstairs and eat dinner with the family in the evening.
I felt so bad when I woke yesterday, muscles so weak and no energy.  My heart was racing and I just wanted to lie flat.  Ant could tell straight away that it wasn't going to be a good day, it quickly becomes obvious.
Last night however I had the best night's sleep I've had for ages and have woken feeling pretty fine (certainly compared to yesterday).  My mind is clear and I want to achieve today.  I know I must rein these feelings in, but it seems so ridiculous that how well I feel can swing so dramatically in such a short period of time.  I am grateful of it when it swings this way of course!  So, another quiet day around the house just to be cautious, but at least I feel human again.

Friday, 1 November 2013

Dr Myhill Update

It's been over two years since I've had an appointment with Dr Myhill, so having recently had some up to date blood tests done by my Gastro doctor I thought it might be a good time to have another chat.  I sent the results and some of my more recent correspondence from my heart and gastro doctors up to her office and yesterday we spent half an hour on the phone talking through them.
Dr Myhill's first comments were about the fact that she thinks my thyroid is underactive as my TSH levels are borderline high.  This is important because if the thyroid is underactive then the mitochondria cannot work fast enough.  The thyroid also controls the number of mitochondria, so it might be that the mitochondria are working properly but there might not be enough of them.  The idea is that if you can improve how the thyroid is working it will give energy production a boost.  There is however a problem with treating the underactive thyroid as the medication normally raises heart rate - something I could do without.  So, it would have to be given in very small doses.  It's not an issue yet, as before you can treat the thyroid, the mitochondria need to be working properly in terms of how they are converting energy,  if that's not happenning then there is no point boosting the thyroid.
We talked about the POT syndrome.  Dr Myhill thinks it would be better not to take the Ivabradine.  This drug will just treat the symptom, but not do anything to help alleviate the cause.  She is sure my heart is beating too quickly because it is not beating strongly enough (due to mitochondrial malfunction) and therefore it has too beat more frequently to do the same job.  Once the mitochondria are repaired, it should return to normal.
We had an interesting discussion about exercise.  I have been feeling very pleased with myself when I have had enough energy to go for a swim at the hydrotherapy pool, but Dr Myhill says it's not a good idea - I'm just wearing myself out - and it's not the right sort of exercise.  The sort of exercise that will help is very short bursts of raised heart rate, so 60-90 seconds of 160 bpm for example, but she also thinks my body is not quite ready for that just yet.  So, swimming might not be the best for me at the moment, but it does give me some sort of psychological boost, because my body feels like it's actually doing something and I like that - even if it is just wearing me out, I might still do it.
Going back to the blood tests, there were a few other things of note.  My C-reactive protein (CRP) was high.  The CRP level is a marker of inflammation in your system.  I did have a bit of an infection around the time the blood was taken and this may have been the cause of the raised levels, but Dr Myhill thinks it would be a good idea to have it retested.
My Creatinine levels were low.  Low creatinine can relate to low muscle mass, which I guess is hardly surprising after 4 years of no real exercise other than day to day activity.
I also had high levels of  Eosinophils, these are produced to fight off allergic reactions or parasitic infections, so when the feacal elastase test that I'm waiting for is done she has suggested that I ask to make sure its also being checked for parasitic infection.  Lovely.  I'm also definitely going to have some sort of food testing done too although I'm not quite sure where or how yet.  Dr Myhill has suggested a RAST Test.
On a positive, my vitamin B12 levels are high which is really good for energy production, so it looks like supplementation of that is working well and all the readings for my kidneys and liver were normal.
We also talked about Perrin technique and I told her that i thought it was the single thing that had made most difference for me in terms of how well I feel on a day to day basis.  Dr Myhills view is that on working on the lymphatic system, Perrin technique is helping to clear away all the debris created from the cell damage taking place and that that is making me feel better.  It sounded like she thought, although it's helping, it is not going to ever get to the root of the problem.  As it is helping, I will continue to use it.
So, I think that was everything, she has written to my GP and Heart consultant and I am going to go ahead and have my mitochondria retested.  I am very nervous about that, I will be very disappointed if there has been no improvement in the last three years since my previous test.  Hopefully, all the supplementation, treatments and sensible activity levels since then will have helped to improve the way energy is being created within my cells.  I hope so.

Thursday, 24 October 2013

On the up...falteringly

So things are feeling much better.  I feel I could even be back to my pre-summer self.  That said, I'm not really doing anything to test or push myself at the moment so lets say, that at baseline levels of activity I am feeling good.
I often know when I'm feeling better because my brain can focus more easily.  Today for example I set to tasks without any procrastination, made some calls I needed to make and got them out of the way and get this...I even shopped around for a better energy deal, something I have needed to do for months, but that my brain just didn't want to set itself to.  This then is a good sign.

What a difference a night makes.  The first two paragraphs of this entry were typed last night after two very good days, this morning I have woken feeling weary and drained.  It was an effort to do my Perrin massage this morning, only the fact that I know how important it has been forced me to push on and do it.  I feel like i could just sit on the sofa all day today and do nothing.
I have an intermittent feeling that I am not doing as much as I could towards my own recovery.  The dichotomy is that when you're feeling bad it's hard to spend the time you need to on these things, though you want to, but when you're feeling better you are busy actually doing other things you want and need to do and you don't feel the need to concentrate on recovery so much.  WRONG this is when I should be focusing my energies on doing the things I need to do.  I am going to make myself a daily checklist of all the things I should be doing so that I can tick them off every day.  It is a pretty long list now.  Even thinking about what should be on that list is a bit wearing let alone actually doing them all.  Where has yesterdays energy gone?

Update on the Dr Terry Wahls "Minding my Mitochondria" diet - I am struggling with this, the part I am struggling with is not what I should be eating - I'm pretty good at that, its the sheer VOLUME of what I need to be eating that I am struggling with.  I need to read more that she has written and see if i can get more insight into how she actually manages to fit the volumes of greens into her daily meals.  So I guess you could say I'm doing the Minding your mitochondria diet "Lite" and hope to step up to the full on "Pro" version at some point.

Thursday, 26 September 2013

ME/CFS - to medicate or not

Uuughh!  Not good.  Two days ago that bug I was harbouring decided to show itself, ( rather than disappear quietly from whence it came).  Of course I should be pleased that my immune system has allowed this to happen, this is a positive thing - I keep trying to remind myself of this, but I feel rubbish.  I have a chesty cough and have been wheezing for two days.  My sleep has been very disturbed which doesn't help.
 On Monday I saw the doctor and she gave me some antibiotics.  We had a discussion about the fact that the antibiotics may affect my general ME symptoms and so it is now a balancing act - do I feel bad enough to risk aggravating my ME symptoms, or do I battle on and just hope my own defences sort it out in good time.  At 2am this morning I was thinking that I would take them when I get up, but now in the light of day I'm thinking I'll battle it out.  She also said I could use my daughters asthma inhaler if I felt I needed to, but this will further raise my heart rate - it was up to 140bpm at one point whilst at the doctors, so the same balancing act applies really.
Fortunately my littlest went on a sleepover last night which means I have a quiet morning ahead.  I intend to stay in bed, drink lots of hot fluids - yesterday's favourite was ginger tea with lemon and honey- watch tv on the iPad and do some meditating.
I had a Perrin appointment on Tuesday, the day my cough appeared.  I feel a bit sorry for my therapist as leading up to the summer every time I went to an appointment things were improving and I was feeling better.  Since the summer, the last 3 appointments, I haven't really had much good news.  Anyway, no major reaction to the treatment, my body seems to be dealing with the treatments very well now.
I was feeling pretty low physically and emotionally on Tuesday, but the good thing about that was that it has redoubled my determination to do whatever I can to make things better.  It's been over 4 years now and I feel a desperate need to conquer this situation.  I had been playing with the ideas in Dr Terry Wahls "minding my mitochondria" book, but on Tuesday I started the regime proper.  This involves seriously increasing the amounts of fruit and vegetables that I'm eating.  She recommends six cups of cruciferous/ green vegetables a day!  Plus one cup each of onion/mushroom, yellow/orange, red and also blue/ black fruit and vegetables.  I have to try and be as gluten  and dairy free as possible, 4oz animal protein and plant protein from nuts, seeds and beans.
There are other non diet recommendations, including brain training, yoga, meditation and spending 15 minutes a day on developing a new skill.  For me this will be my bassoon playing, but I can't do that at the moment because of my chest.  These are all designed to stimulate different parts of the brain  and help increase nerve growth factors, these are associated with increasing growth of axons, dendrites and myelin within the brain and spinal cord.  A higher amount of nerve growth factors are associated with greater levels of repair activities in the brain.
There is another element to Dr Wahls' approach which I haven't yet introduced and this is a form of electrical therapy- neuromuscular electrical stimulation (NMES).  It can be used to improve muscle strength in people who cannot exercise for whatever reason, such as ME.  I am going to talk to the physio at the therapy centre about this next time I'm there.  Had to miss my yoga session at hue centre this week, didn't want to spread my germs.
So you can see that all of this is pretty much a full time job, but I feel refocused and will push on...any good cabbage recipies anyone?

Saturday, 21 September 2013

Pancreatic enzymes

The fact that I haven't posted for a couple of weeks is indicative of the state of my brain at present.  I wouldn't call it brain fog as such, but more that it just can't really settle at anything at the moment.  I can't seem to start anything, finish anything or do much of whatever goes in the middle.  Yesterday morning I couldn't remember my own mothers phone number! I'm also getting my mords wuddled.  Alongside this my sleep has also deteriorated.  I am now apparently only allowed 7 hours sleep EXACTLY.  I had been having 8 hours...nice.   Why is it that I can go almost all day without a pee, but my precious 7 hours is punctuated by 2 trips to the bathroom aaaagh!
My previous post on 6th September was to comment on how well I was feeling, but for the last two weeks it has felt like I am harbouring some sort of bug, not one that will show itself properly, but one that is hiding itself in my throat and nose.  My body is trying to deal with it and that depletes normal resources.  It would be good if it either burst out and showed itself or quietly disappeared from whence it came.

I had a gastro appointment at the hospital on Monday, but when I got there I didn't see my usual doctor, but one of his colleagues.  I was a little disappointed at first, I like the idea that one person can build up a picture of what's going on, but as it turned out,  I don't think it was a bad thing.  As he didn't know my history, he wanted to review everything so he has asked for another set of blood tests and has also requested a faecal elastase test which will test the efficiency of my pancreas.  He has had to get authorisation from immunology to ask for this test, so I am still waiting to hear whether we can go ahead with it, but in preparation I have had to stop taking my pancreatic enzymes - they have to be out of my system for at least two weeks before testing.  So far it has been 4 days without them and at the moment things seem to be okay.

There are some very physical things going on in the house this weekend, it's the annual hedge cutting event, where the children and I follow Ant around the hedge sweeping, bending, lifting and wheel barrowing.  We are also taking delivery of our winter logs today, this is also a team event, the logs are delivered to the front of the house and have to be lifted into the barrow, pushed around to the back, emptied and then stacked.  Both of these activities are good measuring sticks for me as we do them each year and i have memories of how I have coped in previous years.  I think I will bake a cake this morning as it will keep the workers happy later.

8700 steps yesterday.

Friday, 6 September 2013

Feeling good

Just a quick blog note to document how well I'm feeling.
I had two appointments last week.  The first was with my Perrin therapist,  I told her about how the past month hadn't been so good and we talked about what might have been happening.  I had lots of tightenings in my diaphragm during the treatment.
The following day I drove to see my cranial osteopath whom I hadn't seen for three months.  I had left it too long and should have visited a couple of weeks earlier really.  He could see that there had been a deterioration, but was reassuring and told me that I wasn't anywhere near as bad as I had been and that things adjusted quickly once treated.  I wont go for a late afternoon appointment again, I thought it would be good because it wouldn't wipe out the whole of my day, but the hour long drive home was hard and I found it hard to get to sleep that night.
I can't really remember Thursday, but Friday wasn't good, I was snappy with the children and short tempered, it's always a sign that I am not good and I was feeling that I might have undone all the good from Wednesdays appointment.  on Sunday however I had a busy day and even helped with decorating and didn't struggle.  I thought nothing of it, but then this morning I woke up and it was as if someone had flicked a switch, I got up with no problem, didn't think twice about taking a shower (a shower often disappears if I'm having a bad day as it uses so much energy). And got straight on with my day.  I've been on the go all day, clocking up 8700 steps, way over my 5000 pacing baseline.
Energy has continued pretty well this week.  It's been the best week I've had for a couple of months really.  So, maybe I have come out of another dip.  I am thinking that I might go back to the hydrotherapy pool again this weekend, it will be the first time I've done that since before we went on holiday.
The main downside at the moment is my sleep.  I am waking sometime between 4am and 5am.  It's just too early. It doesn't seem to make any difference what time I go to bed.  It is quite an exciting time in our house at the moment as our eldest daughter enters a new phase in her life.  I feel this excitement and I feel it's pull on my nervous system and energy.  I need to meditate more to calm things down, but it could be all this that is affecting my waking.

Sunday, 25 August 2013

Minding my Mitochondria (in bed)

A Bank Holiday weekend and a family day out planned.  Imagine my frustration then when I woke up this morning and my body was screaming at me to do NOTHING.  So frustrating.  I had been looking forward to us spending a day together out of the house before our lives return shortly to the routine of the academic year.  I was sensible, I did listen to my body - didnt have much choice really, it felt so weak.  But, i felt we had to do something so we devised a compromise, I stayed in bed all morning and at lunch time I got up and we went out for a leisurely lunch followed by a visit to a small local museum.  The walk in the park was ditched and instead when we got home we all watched a television show together and then I came back to bed.
I find myself constantly searching for reasons for this current dip in my recovery.  Is it just that as I get stronger I push myself harder?  Right now I feel like I might be fighting with some sort of infection, my throat glands feel tender.  Could it be linked to all the building work that's happenned in the house recently and the chemicals involved?  Could it be my hormones?  I haven't had a period for 15 weeks now, something's going on there.  Whatever it is,  it would be nice if it STOPPED!
On a brighter note I have enjoyed reading Dr Terry Wahls book "Minding Your Mitochondria".  I have already started to implement some of her suggestions, this week I served up a huge portion of kale to the children on the side of their dinner instead of their usual vegetables and each one ate it without question...strange.  They also munched through asparagus steamed in a balsamic dressing (which two of the three enjoyed), spinach curry and brown rice crispy cakes which sneakily had cashew butter and sunflower seeds hidden in them.  I'm guessing if its good for me, it's good for them too.  The difference being the volumes that I will be eating.  I will be devouring 3 cups of green leafy vegetables a day and one cup each of  blue/black, red and yellow/orange fruits and vegetables.  So, a total of 6 cups of fruit and vegetables a day.  There are other commendations of course, with regards for example to animal and vegetable proteins, minerals and essential fats.  I have been building up to this gradually, but tomorrow my first big shop will be delivered with lots of supplies and I can step 
things up a little.
  I'd rather not spend another day in bed tomorrow, but the fact that its a bank holiday means that I can if I need to,  Ant will be around to sort out anything that needs doing and I can use the day to recuperate, but after taking it so easy today, I hope I won't need to.

Saturday, 17 August 2013

Feeding the mitochondria in ME CFS

Dear Blog...where do I start?  This condition, illness, disease, whatever you want to call it is sooooo frustrating.  I've had two brilliant weeks away on holiday and was hoping to come home completely refreshed and with some energy banked.
  It just hasn't happened.  At the moment I find myself with just enough energy to plod through my day and on days like today, even that is an effort.
I find myself thinking of a passage from Alex Howards book "Why Me?"  How much time am I actually spending in my day working towards getting better?  The answer for me is, some.  I'm taking all my supplements and doing all my Perrin massages, I try and eat well, I abstain from alcohol and caffeine, I'm trying elements of Buteyko breathing techniques and meditating (not as often as I used to). I'm even trying to do some exercise at the Hydrotherapy pool and yoga at the Therapy Centre.  But, as you start to feel a bit better it is easy to let some of the things that have helped you get to this point slip a little or to become complacent.  I feel it is time for me to refocus my efforts and my attentions.  I think I am 80% well and I desperately want to find that next 20%.
So, today I have ordered a book by Dr Terry Wahls - Minding My Mitochondria  it will be the next thing for me to try alongside everything else.  I have watched  some of Dr Wahls you tube videos and found them very interesting.  I know from Dr Myhills testing that my mitochondria are damaged,  not working properly and the cell linings are damaged so I'm going to spend some time feeding my mitochondria and re-reading things that I may have forgotten and that might help.

Friday, 26 July 2013

Another sunny Saturday bed!

Last weekend was not so good again.  I've lost count now of how many weekend afternoons I've spent in bed.  It's soooooo frustrating, especially when the weather is good.  On Saturday I had the horrible nauseous yuckiness that I used to get and just felt rotten in the morning.
I do have a theory about my little "dip" this time.  I think it could be down to the building and kitchen fitting work that has been going on in the house.  My translocator protein tests that I had done with Dr Myhill showed that my body was not dealing with chemicals very well, in particular Formaldehyde.  Well there's quite a lot of that kicking around in my kitchen at the moment and it just seems a bit coincidental that my wellness should take a dip at this time.  In addition I've had a constant supply of Perrin spots.  By that I mean spots appearing along the lines of my Perrin massage, so on my head, forehead, neck and chest.  This teamed up with the nausea makes me think that my body is trying to deal with these toxins.  I've had the vague rises of a sore throat and tender glands too.
On Thursday I went to see my heart doctor at the hospital.  We talked over the last 6 months and I asked him lots of questions about increasing blood volume to try and improve the POTs syndrome.  When I finished he said "will you just do me one favour?"  "Will you just take one of the tablets just for one day and see how you feel". He asked so nicely, I think I might!  He has given me the same prescription for Ivabradine twice before and I've never used it.  This time I took it to the pharmacy and actually collected it which is further than I've gone before.  It would be funny if I start taking them and it cured all my ills, I know he would say to me "you see, I told you to take those 6 months ago". I'm nervous about it, I really don't want to start taking heart medication again, but I have given it a year without the beta blockers to see if my heart rate would come down on its own and it has a bit, but not enough.
Anyway, I'm going to forget about all that for now.  We are on the first day of our holiday and I intend to spend two weeks doing not very much, that has got to be a good thing.

Wednesday, 17 July 2013

An afternoon outing

Well, my knees and thighs finally feel like they might be back to some kind of normality - thank goodness.  It's taken a week and a half for them to recover.  As i was getting stronger i took it easy andI laid off all my usual weekend activity such as the hydrotherapy pool and yoga and just kept myself busy around the house instead.
In lots of ways this beautifully hot weather has encouraged me to relax more, I've spent some time in the hammock or the garden chairs outside and just sitting in the cool inside.  My body seems to be coping with the heat pretty well at the moment.
I  Overcame a demon today by taking the children on a trip to a local beauty spot where they could swim in the river and cool off.  It's about a half an hour drive from our house and the last time I'd been there was almost 4 years ago just after I had fallen ill.  I remember it fairly well, it was the day I had been to the doctors for the first time, not knowing what was wrong with me but just feeling awful.  My pulse was racing, the doctor had said he thought it might be a urine infection and sent me away with some antibiotics, if only it had been.
We met friends at this beauty spot that evening for a barbecue.  I just sat on the rug feeling rotten and telling everyone i probably had a urine infection.  I remember when we went to leave having to walk across the field to get back to the car park and it was such a struggle.  I'm glad to have been back there with the children today and had a nice time with them, hopefully I won't just remember that place for how I felt at the barbecue that day now.
Tonight I am in bed exhausted, it was quite a lot of driving for me today and also I seemed to knock up 1000 steps just around the house this evening bathing and putting Ben to bed this took me to 7600, just too many.

Thursday, 11 July 2013

A Weak Week

It's almost a week further along now and my legs still don't seem to have recovered properly.  I was supposed to take the DD's holiday shopping today, but have had to cancel and have been on the sofa most of the morning.  I'm going to try and keep my steps really low today in the hope I may be able to take the girls out tomorrow instead.
I have had a Perrin appointment this week, my physio gave my thighs a lovely massage which hurt at the time, but definitely made them feel better for a short while.  I was pretty good post appointment it had a really bad headache and felt bad by 7pm when I went to bed.
Yesterday I went to my yoga class at the therapy centre which was all either sitting or lying down it normally makes me feel better, but yesterday even that felt Like such hard work.
I guess I've just got to rest up until this passes, but it so hard when there's so much to do.  I've got an interesting book that has been taking me ages to read, so I'm going to force myself to stay sat down and try and finish it.  There's always Candy Crush of course...

Sunday, 7 July 2013

ME CFS and weak legs

I woke up on Friday with really weak legs, but it was different this time.  Normally my thigh muscles just go very weak, but this time it was my thighs and my knees.  My knees were aching so much, my body was shouting at me to SIT / LIE DOWN.
Thank goodness for the weekend as Ant was around and he made me rest, the weather's been beautiful so I spent lots of time in the hammock in the garden and watching the tennis.  I've managed two days of under 4000 steps which has really helped.
It's really weird that I don't feel poorly as such and I'm sure it's the Perrin Technique that's made that difference, but the achey ness in my knees is a new symptom and that worries me.  My general pattern is that my symptoms are decreasing, I don't like the sound of something new.  I have felt slight achy ness in my knees before when I've been fatigued, but not like this, it's constant and my legs just don't want to be stood on - which makes things a little tricky.
This evening they felt a little better, but as I lie typing this my knees are uncomfortable and my thighs aching and weak.
The last few months have finally caught up with me.  I had to go to bed for An hour this afternoon during the Murray Wimbledon final!  Saw the first set then Feel asleep as soon as I lay down, fortunately woke in time to watch the third set, what a game!
Really got to try Hard to carry on doing not very much this week

Thursday, 4 July 2013

Too much today

Crashed today, it was too big a day, a trip to London and 10000+ steps.  Too much on top of everything else that's going on at the moment.  At the same time my sleep hasn't been as good as it has been.  I need to sleep now and tomorrow all those things that I told my husband I would do on Friday?  Well, they're just going to have to wait.  Thank goodness there's a small tennis match going on - that will give me a good reason to sit down, though with Andy Murray playing, it might not be too relaxing!

Monday, 24 June 2013

Walking the thin line

I have tested my body to the limit this week, emotional stress, physical stress, and time pressured.  In general I've coped well, but since Friday I have really felt that I was in danger of an enormous crash and have been worried by that.  I didn't go to the hydrotherapy pool on Saturday this week knowing that I had an extremely busy day ahead, infant I had to go to bed on Saturday afternoon.  I stumbled on, the thought of a forthcoming holiday keeping me going.  Sunday was equally as busy, but I foolishly thought that squeezing in a Sunday afternoon yoga class might help make me feel a bit better...WRONG!  My baseline heart rate was already raised and anything requiring me standing or using muscle strength made it shoot up.  I couldn't do much and didn't feel good.
After yoga (4pm) I wanted to go straight to bed, but other commitments meant it was 7.45pm before I got there.  These past few years have made me very good at listening to the subtleties of my own body and knowing when it's not happy, and although I have without doubt improved in this area I still struggle to just STOP when I really should.
The next few days are still busy but better than last week and then on Tuesday evening I can relax completely.  I then intend to do nothing for 4 whole days, a very well deserved (if I say so myself) and needed break.

Feeling good

It's been a really good week this week, just a small blip on Thursday, but the rest of the week has been fine.  I had a Perrin technique appointment on Friday and heard the results of the second questionnaire I had completed.  Apparently when I filled the questionnaire in at my very first Perrin appointment I scored 84 points.  This time, a year later my score was 42 and a half points - a 50% decrease.  This is encouraging.
I had another trip to the hydrotherapy pool yesterday.  It was a bit harder this week as my heart rate was higher.  I had to wait longer at the end of each length for it to dip back down under 100bpm before starting the next length.  I persevered and did my 10 lengths of backstroke and a couple of front crawl and then my leg kicking exercises before getting out.

Sunday, 9 June 2013

Swimming with a heart rate monitor

Today I went for my second swim at the hydrotherapy pool.  It went very well.  I did 10 lengths of backstroke today followed by some leg kicking.  Having my heart monitor on whilst swimming is so helpful, it keeps me in check.  My natural instinct would be to try and keep ploughing on up and down the pool and then suffer the effects later, but with the monitor I wait at each end until my heart rate drops before starting off again, it slows me which is a good thing.  The positive thing from today's swim was that my leg muscles seemed to cope with it better than last week.  They weren't all shaky and weak feeling so I am very pleased.
The best thing about all this is that at last I feel like I'm doing a bit of exercise (gentle though it is), it's a start, one swim a week and I'm just about to start a second yoga class a week too.  I feel like I'm on the up again....hooray!

Sunday, 2 June 2013

Hydrotherapy pool visit

Today I took my first visit to the local hydrotherapy pool.  My doctor referred me back in April, but I haven't had a weekend where i've felt I had the energy to go or wasn't doing something else until now.
I arrived there for 9am and was glad that i did as it was empty at that point.  After speaking to the lady who was running the place, I went to change and then went in.  The water was like a warm bath - very nice, although apparently not as warm as normal as they had had problems with the boiler this morning.  I started with a few lengths of back stroke, then some widths of front crawl and then some walking in the water, finishing off with some leg kicking whilst the rest of me was supported by a toggle float.  The pool was getting pretty busy by the time I got out.
I wore my heart monitor the whole time to try and keep my HR below my anaerobic threshold and help to reduce strain on my body and minimise symptoms.  I was pleasantly surprised by my heart rate.  It peaked at 131 when I first got in, but then averaged 110 for the whole time I was exercising.  I would swim a length then look at the monitor and if it was going up I would wait a short time for it to come down again and then swim again.  I generally didn't have to wait long.
Anyway, I didn't hang around and was probably in and out of the pool within 15 to 20 minutes.  My thigh muscles were trembling a little and felt very weak, I was a bit concerned I might have overdone it, but knew I had a pretty quiet day ahead so wasn't too bothered.
It's the evening now and as yet no adverse reactions.  My thigh muscles have been tired and achey all day, but I think it might just be that they've done a different sort of exercise, that their not used to.  The best thing is that I haven't felt ill all day.  I know that I could still have a reaction tomorrow or even Tuesday, but I am feeling pretty positive about the whole thing.  This could be a good way of exercising my muscles and keeping my heart rate down which will eventually hopefully mean I can increase the time exercising as my muscles get stronger.

Tuesday, 28 May 2013

Perrin technique review - one year on

So the roller coaster rolls on and this week has been a good one.  I had a Perrin appointment on Tuesday and recovered well from that.  It has been a busy week and I've coped well, even had two FIR saunas this week.
I have been having Perrin technique treatments for a year now and Before  this weeks appointment I filled out two questionnaires.  The same questionnaires I filled out a year ago when I started treatment.  One of them was just a simple list of symptoms and you tick any of the symptoms that you have experienced in the last week.   I ticked away and was very pleased when I was told that a year ago I had ticked 19 of those boxes and this week I had ticked only 9.  A great improvement, 50%  less symptoms than this time last year.  The second questionnaire takes a little more annalysis, so I don't know how I've scored on that one yet.
 The question is, how much of that improvement is down to Perrin?  Not an easy one to answer.  I haven't been doing any other "treatments" this year, I continue to take Dr Myhills supplements (some of them in slightly less numbers) and doing a weekly floor based yoga class, which always makes me feel good.  I have followed the Perrin regime consistently. Other than days when i'm going to have a proper treatment, there has probably been only two days in the last year that Ant hasn't dutifully massaged my back in the morning.  There have been days when I've maybe only done two further head massages and back twist routines rather than three, but in general we have followed the routine strictly.  I feel it's Perrin that has made the difference.   It's difficult to remember back to before I started treatment but when I think about my activity levels now I know they are so much more improved.  Yesterday, other than sitting down for meals, I didn't sit down to relax until 8pm.  I had been gardening and hanging washing, driving and cooking, a few sits at the computer, but pretty busy all day.  Before Perrin just one of those activities would have forced me to sit down.  I must remember to build in relaxation time though, it's not good to have days like that.  I can feel an internal agitation in my system this morning that tells me my body's not happy.  I probably need to make an appointment to see my cranial osteopath this week.  I still have bad days as my blog will confer, but they are fewer and farther between now and I do think it is Perrin technique that has made the difference.

Sunday, 19 May 2013

Weary weekend

Just when I think things are going well, my body likes to show that actually it's still in control of this situation.  At least three times last week different people asked me how I was doing and I replied with a really enthusiastic "really well", very well in fact. I felt good at the start of the week but when I woke up on Friday morning I knew that my body was fatigued.  It was a struggle to get up on Friday, but I perked up a bit as the day went on.   Saturday morning was just the same, I was drained.  I had a night out planned on Saturday for a friends 50th birthday celebration and it wasn't looking good for that.  So, soon after 12pm I took myself off to bed and didn't get up until 4pm in the hope of giving myself a little boost.  The sleep was strange, for the first half of it I couldn't tell if I had slept or not.  It was like my dream was about going to sleep and I couldn't tell if I had really slept or just thought about it.  A bit disorientating.  I did feel a little better when I got up and we did make it out for our meal in the evening.
Today things are still not right and it's such a shame because today or tomorrow I am going to fill out my Perrin questionnaire (the same one I completed when i started my treatment so we can do a comparison).  If I'd filled it out on Thursday I think it would have been excellent, but now it is going to be blighted by the past three days.
There's no one activity that I can think of that has led to this little blip, but my general activity levels have been up this month. I know that my average daily step count for May is 6500 and it's normally around 5000, so it could just be an accumulation of this increase in activity.

Wednesday, 15 May 2013

Fasting day

On Wednesday I tried a fasting day - that's restricting calorie intake to 500 calories for the day.  It was strange.  I didn't have a problem with hunger at all.  I had a late breakfast at about 11.30am (yoghurt, blueberries and ham) and then my evening meal at 6.30pm (tuna steak with grilled courgette and red pepper- very tasty) and even though I was hungry and ready for the meal finishing the whole plate was quite hard.  What I did have a problem with however was how I felt.  I had a headache from pretty early on.  Not a nasty headache just a nagging little headache.  It can't be caffeine withdrawal as I haven't had tea, coffee or chocolate for three and a half years now.  It could have been sugar withdrawal though!  I also felt a bit light headed and just a bit weird.  I felt weak and lethargic.  When Ant came home and we talked about it we decided that my body probably isn't ready for such shock tactics just yet.  I still had the headache when I woke the following morning but it disappeared quickly, the weakness however stayed with me for most of the day and I had an early night.
Something I forgot to mention last week was that we took a family trip to the cinema to watch Iron Man 3.  It's funny how certain things happen that trigger thoughts of your condition and to me this simple trip to the cinema was a great boost.  In the car on the way home it struck me just how LOUD and FULL ON the film had been, especially the closing battle.  There was a time a while back where my body just couldn't have tolerated such aural and visual stresses, I wouldn't have even contemplated going to the cinema to see such a film, I used to have to leave the room if the children were watching anything slightly stressy on our little tv!  But this week I went without giving it a thought and didn't have to walk out.  It was a good marker of improvement.

Wednesday, 8 May 2013

The 5:2 Fast Diet

So, I've finally got my act together to try and raise some money for F.O.R.M.E. the Perrin charity currently trying to raise money for research around diagnosis of ME.  I've asked the school if they will do a textile collection.  I had to write a letter to the school council which decides what charities the school will support.  My little one also put in a little hand written note about how M.E. effects his mum.
I took Ben for a cycle ride on Friday, he'd been asking for a while and it was a beautiful day so off we went with snacks and water for our.....3 mile trek.  Doesn't sound far for a bike ride does it, but actually it was probably a little further than I should have gone.  I was shattered when I got back and had that horrible wobbly internal agitation feeling that I'm used to as a signal I've overdone it, but I recovered.  By Sunday I had a new sensation in my thighs, they were actually sore, not aching, but properly sore as I walked.  This is a result of deconditioning, not a symptom of the M.E., a sign of small muscle fibre damage because they are not used to such activity.
Yesterday I emailed Dr Michael Mosley one of the co-authors of "The Fast Diet" the official 5:2 diet where you eat well for 5 days and then reduce your calories for 2 days.  I am particularly interested in the passage on fasting and repair genes. When you fast your body starts a process called Autophagy, a process where the body breaks down and recycles old and tired cells.  He describes it as the equivalent of taking your body along to the cellular equivalent of a garage.  I wonder whether there is any potential health benefit here for me.  I know that things at a cellular level aren't working properly and wonder whether there might be any benefit to the methylation cycle by trying the 5:2 diet.  Hope I get a reply.
As it's ME awareness month here is a link to one of my Fitbit pals blog posts about how ME affects her.

Sunday, 28 April 2013

Managing your ME/CFS course

Wednesday pm
Something strange is happening at the moment.  I appear to have more energy than normal.  Circumstances here may be significant.  Ant has taken a huge emotional blow in the last week and a half.  He has been the strong one in this relationship in recent years.  Since I fell ill it is he who has stepped in to do all those things I haven't been able to do.  He has come with me to all the important appointments, he has held me and calmed me when I've been shaking in the night, he's cooked for me when I've needed food and not had the energy to prepare it, at times he's run the house, looked after the children, looked after me and gone to work.  He's always been upbeat and never said anything negative about my ME and how it's effected our family.  Now he's having a rough time and its like my body has just completely stepped up to the mark and is ready for anything.  I need to support him and my body is letting me do that.  In the last 7 days I've done over 50,000 steps and my normal 7 day average is around 35,000 steps, that's quite a sizeable increase.  My only concern now is that I might be completely running on adrenaline and that when all this is over I will just collapse in a heap and relapse badly.   Or maybe, this new energy will stay with me, that would be good.
There has been a lot of emotional stress in these past two weeks and I know that this would normally have quite a big impact on my symptoms, but so far I am holding out well.  I do feel I should go and see my cranial osteopath so that he can help me stay balanced and on top of things.
Thursday am
Feeling a little more cautious this morning.  Legs feeling a little weak.  I won't be walking Ant down
 to the bus stop today which I have done for the last three days as I feel I need to preserve my activity for when its needed later in the day.  The phrase "do 50% of what you think you can do" springs to mind.
Had a great yoga class yesterday at the therapy centre. I really felt that my supplety had increased and I was able to stretch a little further in some of the poses.  The relaxation - which is very short in this class - was wonderfully deep and still.
I have attended two of the "Managing your ME" course sessions at the local health centre now.  The first session was very slow and I didn't learn anything new, although its always useful to be reminded of things I guess.  The second session was much the same.  The two people presenting the course are constantly referring to their notes which makes me feel they are not that familiar with their material and it doesn't help that their presentation style  is somewhat lacking in Ooomph ( not ideal for those
suffering with Chronic Fatigue, they could end up putting us all off to sleep!).  They've also spent no
time working on the group dynamics and it often feels awkward.  So, I'm not really enjoying it.  The
girls were asking me why then am I wasting 2 hours a week by continuing to attend?  I
guess I'm hoping that if I keep going that at some point a little valuable nugget of information will turn up that will make it all worthwhile.  In fairness, something we talked about this week did come in useful.  We were talking about unhelpful thoughts and the categories these normally fall in to (catasrophisation, generalisation, personalisation etc).  For me, the worst of these is probably the thought that "this is never going to go away".  It's a generalisation, because it's not gone away yet, it doesn't mean it's never going to go away.  We were encouraged to look for evidence to see if there is
any to back up the unhelpful thought.  Well this week my doctor sent me for a scan, so of course my
brain went into overdrive as I imagined all the possible horrible things they might find.  I took a step
back mentally and reminded myself of the session on Monday,  what evidence did I have; the doctor told me after examining me that she couldn't see anything she was overly concerned about, she told
me that the appointment wouldn't be for weeks as she wasn't marking it urgent and yet my brain
automatically thought of the worst case scenario.  Using this approach helped me to put things in
perspective and was useful.   Two days later I had a call from the hospital asking to book me in for scan the next day!  I panicked again, "the doctor told me it wasn't urgent and that it might not happen for a couple of months " I said.  "It isn't" the lady on the end of the phone replied "I've just got a free scanner, you can come in May if you want or you can come tomorrow".  I went on Tuesday and everything was fine.

Sunday pm
Well the collapse finally came on Thursday evening.  I was in bed by 7.45pm with my heart pounding and my muscles weak.  It had been a third consecutive day of 9000+ steps and it was just too much.  It has been an unusually stressful week and it's just all caught up with me.  I've had to go for a sleep in the last two afternoons.  I'm hoping things will settle down a little in the coming week.

Sunday, 14 April 2013

With energy comes positivity

I awoke with some energy this morning.  It was quite a good nights sleep.  I was full of ideas and vibrant.  Ant said he liked it when I have a relapse and things are quieter and I'm not constantly coming up with ideas of things to do!  We laughed.  Anyway I then had to Sauna, shower and do my Perrin massage and by the end of all that the energy had gone.  Not a problem, after a busy day yesterday and a normal week ahead, I had planned to do pretty much nothing today.
Yesterday was such a lovely day.  Ant and I went shopping together in the morning, something we very rarely do together, we bumped into the family of someone he works with.  After lunch I had a drink with someone else who has ME, it's so nice to speak to someone who has an instant understanding.  There's no need to explain anything, they just know.
Later, I took My youngest (Ben) to a children's concert which gave me extra inspiration to practice my bassoon.  I must push on with that.  We bumped into more people we know.
Then, to finish this very social and enjoyable day Ant and I went out early to the local French Bistro and had a relaxed and delicious meal.
It just amazes me how positivity returns with energy.  Yesterday I felt I could conquer not just ME but the world.  What a difference the return of a little energy makes.
On Friday two kind neighbours both called to let me know that they'd heard that the local health centre was running a course abut managing ME and still had some spaces left.  I made some enquiries and discovered it is a 5 week group course using cognitive behavioural therapy to help manage systems and I've booked myself on.  It starts tomorrow.

Saturday, 13 April 2013

Feeling Good

I've had such a lovely day today.  I've had plenty of energy.  My energy level feels like its back to where it was before this most recent blip.  I've only done 3874 steps today, quite low for me, a good 1000 under an average day, but it has included a trip out this morning, a visit to a friends for a chat, an afternoon concert with two of the children and a lovely relaxed meal out with Ant.  I can't write more now as its 22.20 and this is my second late night in a row.  I need to go to sleep, but I will write more tomorrow.

Wednesday, 3 April 2013


It's easier to look back retrospectively and piece together what's gone on.  I now think that the relapse that I had over a week ago was not down to the osteopathic treatment I had but down to a stomach bug that continued on through the family affecting son and hubby after me.  All the symptoms; nausea,  general weakness and bowel disturbance, were all things I associated with the early days of  Perrin technique.  The big difference was that within two or three days of a treatment I was getting back to normal, but this time it took MUCH longer.  So, it is confirmation that I'm now able to "catch" things, having had a cold and a stomach bug now.  After the stomach bug however it is apparent that recovering from these things is going to be a bit different from days before ME.  My energy levels were completely wiped out and took a long time to return.  Only in the past few days have I begun to feel like my energy was returning.  In true boom and bust style I then went completely bonkers yesterday.  I drove the girls across town to a shop, then drove to another part of town to go to a different shop.  I then walked down to the village with my little one and back again in the not most direct route.  What was I thinking?  Knew I had overdone it and spent the rest of the afternoon on the sofa.  Ant then had to come home (6.45pm) and cook the dinner and take DD1 out to her social event in the evening.  I feel bad about that after he's had a long day in the office.
Last night I was woken with some of the horrible night time symptoms I used to get in the early days;    Hot and sweating, heart racing and clammy feet.  In the old days that would have been followed by feeling cold and uncontrollable shaking.  Thankfully neither of these things happenned.  I watched some video in bed on my iPad and tried to take my mind off it whilst I waited for it to pass.
This morning I feel weak, so what of today's plans?  We were due to drive half an hour to visit friends, a short walk by the river, then back for lunch at their house.  I should probably cancel, but I  won't.  It's been ages since we've seen them.  I'll just do nothing until we have to leave and play it by ear when we get there.
Something strange happenned when I was recovering from the stomach bug, I had 4 really good nights sleep!  It felt wonderful,  for 4 nights in a row I woke only once during the night instead of my 2 or 3 times and the sleep felt very deep.  This sleep was still unrefreshing, but it still felt so good to have slept so solidly.  I was disappointed when this run of sleep came to an end and have been trying to think what might have been the factors that made such a difference.
There are several theories about what causes the sleep disturbances in ME.  There may be some dysregulation of the hormones dopomine and seratonin as we know that the endocrine system which produces them is often dysfunctional in people with ME.   I like this description from the website:
"If the sympathetic and parasympathetic are out of balance due to autonomic dysfunction, it could put you in a state of heightened arousal and awareness when you're trying to sleep. It's a lot like how a   new parent is always on alert for a crying baby, never really getting into a good, deep sleep."  That's how it feels to me.

Monday, 25 March 2013

Relaxation and Thai massage

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

Saturday, 23 March 2013

Brain Fog

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

Wednesday, 20 March 2013

Not the best week

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

Tuesday, 12 March 2013

Perrin Technique - post treatment exhaustion

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

Sunday, 10 March 2013

Anaerobic threshold and ME / CFS

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

Polar FT7

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

Friday, 8 March 2013


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

Saturday, 2 March 2013

Manual manipulation

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

Friday, 1 March 2013

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

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

Thursday, 21 February 2013

Buteyko breathing

So, I'm starting to feel vaguely normal again today, the Wednesday routine still feels like its taken a little bit more out of me than it normally does though.
I had a Perrin appointment yesterday and we discussed Buteyko breathing.  This is a method of retraining the breathing, most commonly used with asthma sufferers.  If I have understood correctly, the Buteyko method can be used to rebalance acid levels within the blood and this can help more oxygen get to the cells.  It appears that many people with ME "over breath".  This makes it sound like too much deep breathing is going on, but actually it's the opposite, too much shallow breathing which results in too much carbon dioxide being expelled and the blood becoming to alkaline.
Feeling really rubbish again today.  Woke at 4.45am, 25 minutes later than the previous two days so that was good.  It was so hard to get up when I finally did at about 7.30am.  My legs are like lead, I felt sick after breakfast everything is so much effort.
I'm trying to do all the right things, there was not much food in the house this morning.  The easy breakfast choices when I got to the kitchen were toast or cornflakes, neither of which offer much nutritional value.  I sent one of the children to borrow an egg and made the effort to mix up some four grain pancakes which I had with blueberries. I've done my massage, I've popped my 8 morning pills and I'm sat here with a cup full of minerals.  I don't know what else I can do.  I need rest now.  I know that if this was the weekend and Ant was here, I would still be in bed. And that would be another day written off.  As it is, I have one hour to myself this morning then I will have to do some "creative" parenting so that I expend the minimum energy whilst doing my bit.

Saturday, 16 February 2013


It's a beautiful morning outside.  there was frost on the ground this morning, a gorgeous blue sky with just a few wispy pinky tinged clouds.  this is the sort of Saturday morning when we would normally get the kids out of bed and go to the forest for a walk.  this morning i just don't have the energy to do that, my legs are too weak.
So, I guess a fitbit tracker is only any use if you take any notice of it.  Yesterday I had done over 8000 steps, way over my 5000 step baseline.  Foolish on a day when I was also going out to a friends in the evening.    This is a predicament of my own making.  I chose to go for a walk down to the village with my friend and our children yesterday morning and I probably shouldn't have knowing that I was going out in the evening.  I just hate to make these decisions and in the morning, when I made that decision, I was feeling fine.  By the time it came to the evening I was already tired and not really great to go out.  It didn't help that our evening event wasn't even starting until 8pm, fine for everyone else, but I was already ready to retire to bed at this point.  I went because I wanted to catch up with my friends, because that's the calculation that you make, constantly.  I stayed too late as I often do and left at 11.40pm.  As my friend was seeing me out she asked if I had lost weight, "no" I replied.  "Your legs looked thinner"she remarked, "maybe it's just those jeans your wearing?".  "I've lost all my thigh muscle" I said " I used to have such lovely muscley thighs".  Her response...
"you need to get exercising", "I wish" I replied and left.
  This morning as I sit in bed with not enough energy to go out with Ant and help him choose a new coat, this conversation upsets me.  It hurts me,  I would love to be able to go to the pool and thrash up and down or play squash with Ant and the kids tomorrow morning or ANYTHING that vaguely makes me feel like I've exercised!  Anyone who really knows me and remembers the real me, would know how much I want to do these things.  What I really should have said to her was, "Do you even realise how much of an effort it was for me to even be here tonight?"  Of course I know the answer to that question, it's no.
I've shed a tear this morning, not in anger, but in frustration about this condition and in fear that it might never go away.  I've found this article about post exertional malaise
that I should probably send on to my friend, but I won't.  I might just have a chat to her next time we're on our own though.

Monday, 4 February 2013

Impatience and breathing in ME / CFS

I'm starting to feel a bit "fidgety" about how my recovery is going.  I know it's not possible, but I want to feel a constant forward motion and since Christmas I haven't really felt that.  I am 9 months into my Perrin treatment and recommend treatment time for me was 12 to 18 months, so potential still only halfway through with plenty more time for further improvements.  Someone I know with ME said to me the other day that steps forward often happen in bursts, so a plateau then a burst then another plateau and so on.  I know this is sometimes the case, but I just feel impatient.  I feel I need to personally refocus on what I can do to help things along.  I guess I was on a bit of a downer about this when i attended my Perrin appointment last week.  My therapist asked what my current recovery goals are and I didn't really know.  So, I need to sort that out.  I am a list maker and a box ticker.   I get a great sense of achievement striking things off a list, and I currently have no list.  It needs to be small achievable things leading to a bigger goal.  We discussed the idea of looking at my breathing patterns as she had come across some interesting information about it and the effect on the autonomic nervous system.  I will write more about this when i have read more, but here's one of the sites I've been looking at: Disordered breathing in ME  This morning I started a new breathing regime 25 minutes of deep diaphragmatic breathing twice a day, breathing in for 6 seconds and out for 6 seconds at a time.  It feels good and it makes me feel like I'm doing more to help myself.

Tuesday, 22 January 2013

Snow Fun

Aaah, Tuesday, an empty house.  People's schedules have moved around a little and that now means that I have a day at home on my own on Tuesdays.  I have loads to do of course, but I'm determined to spend some time resting today. The fire is lit and I am on the sofa with a drink and the iPad. 
I have found some really interesting ME/CFS websites recently (through my new Fitbit community) and I feel guilty sitting down reading that sort of thing while the children are around, so I'm going to look at some today.  The more I have been reading, the more I want to explore the idea that the secret to more activity/exercise for people with this condition is heart rate.  I need to read more.

I need to have a quiet day, because I'm afraid I just cannot resist snow fun.  On Friday morning I took  my little one trooping across the fields in fairly deep snow over to our favourite tobogganing slope.  Quite a walk and it was still snowing.  When we got there the snow wasn't ideal, too soft and powdery, not fast enough for our liking, so we didn't stay too long.  Then we tromped all the way home again.  I was good for nothing for the rest of the day of course.  On Saturday I resisted and Ant had all the snow fun with the kids, but on Sunday I was out there again, though was more cautious, we drove to the slope to preserve energy and I only did a couple of runs so only had to climb the slope twice.
Yesterday I managed to clock up eleven thousand steps with a trip into town and that's way above my normal daily average so today I intend to spend some time sitting and not feeling guilty about it.

The blood tests I had done at the hospital (to see if I was menopausal) have all come back "normal". My menstrual cycle has restarted today after 64 days, I guess that's my new normal.

It's Ants birthday today and amongst other things he received his very own Fitbit tracker, so he can see how sedentary, or not, he's being at work. So far he's done 2211 steps compared to my 2660.   It's going to be so hard to curb my competitive nature on this one.