Monday, 30 April 2012

Perrin technique - 10 days on

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

Sunday, 22 April 2012

Rollercoaster Day

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

Thursday, 19 April 2012

Perrin technique & new symptoms

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

Monday, 16 April 2012

Sometimes you just have to do it

Woke up yesterday morning knowing that in spoons theory terminology I probably only had one spoon for the day.  It was hard getting out of bed.  Having missed last weekends walk down to the village with Ant in favour of a FIR sauna, this time I really wanted to go and spend the time with him.  I justified it by saying it would be the only thing I did that day. It was raining so we put on our wellies, dressed appropriately and set off.  I knew even as I was leaving that it was the wrong thing to do, but I really wanted to go.  We had a lovely time sploshing through the puddles down to the shops to pick up a few little things and then back again.  I had very little energy and did nothing else for the rest of the day.  I guess the good thing is that I know exactly what caused this little blip.  On Thursday I was feeling good and walked with my little one down to the library and because I was feeling good we took a few detours - a friends house (not in), my mums house (not in), back to the shops and then to the park - before walking back home again...Foolish!
The difficulty is that if you're feeling really good then when you do these things you don't necessarily get an instant fatigue effect (sometimes you do).  I have read several articles about the classic "delayed fatigue" associated with CFS, but still don't really understand it. 

Sunday, 8 April 2012


I have been reading a couple of articles over the past couple of days about the drug rituximab.  It is a cancer drug which was being given to some cancer patients who were also long time CFS/ME sufferers.  It unexpectedly had a really good effect on their CFS symptoms and now research is being done to ascertain how helpful it might be in treating CFS/ME.  Here is a link to one of the articles: rituximab
If I have understood properly, then the authors of the research think that because of the way the drug has worked, it suggests that ME is an autoimmune condition.  It's really good that this sort of research is being done.
Had a FIR sauna for the first time in ages yesterday.  It went well with me breaking a sweat after 27 minutes at 45 degrees, normally it takes me about 35 minnutes at 47 degrees.  It did mean that I couldn't take the stroll down to the village with Ant that I had planned for yesterday, which was a shame, but I had my sensible head on and decided it was sauna or walk not both.  My Mickel Therapy however would say "if you want to go for a walk, go for a walk"  I have currently lost faith in this approach.
Hopefully I can get back to weekly saunas now.

Sunday, 1 April 2012

Another sluggish weekend.  By 2pm on Friday afternoon I needed to go to bed, but didn't actually make it there until about 6pm when I slept for an hour and then got up and ready to go out for a dinner party we had been invited to.  The dinner was fun, but by 11.40pm I just knew we had to leave or I would regret it the next day.  It was a struggle to get up on Saturday morning, but I took it easy in the morning and we all went out for tea and a sticky bun and to return some books to the library.  When we got back home I went straight to bed really weak and exhausted and I stayed there until about 4pm when my youngest came into the bedroom and commented that "you sleep more than me mummy"  It was just an innocent comment on his part, but in my head it was "my mum is not very active and never has any energy" so I got up and went downstairs to join in with the others. 
Then later that evening, as quickly as it had left me, my energy returned and I picked up.
I downloaded a new ipod app this weekend it has been developed by the Chronic fatigue service at the Royal Hospital for Rhuematic Diseases in Bath where I saw Dr Grey and a northern CFS service.  It's called Active ME and is designed as a visual representation of activity levels.  You input the intensity of your activity levels throughout the day and it produces a colour coded report that helps you to see very quickly if you need to adjust activity levels.  I guess it's a pacing tool really.  I'm going to try it out for a while.
Still haven't e-mailed my Mickel therapist.  I am delaying, but know it really needs to be done.
I am really looking forward to the fact that Ant has two four day weeks coming up.  Things should also be a little easier as most of the kids regular activities have stopped for the Easter holidays, this means not so much running around in the car for me.
Haven't been up to a FIR sauna for the last few weeks so little behind on that schedule, but hoping to get back to it later this week.