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.

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.

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.

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.

Sally Sews Something: So how does ME affect me?

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.

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.

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.