Sunday, 31 July 2011

Swimming in positivity

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

Friday, 29 July 2011

Thinking about therapies

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

Friday, 22 July 2011

A Good Day

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

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

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

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

Monday, 18 July 2011

Quite A Buzz

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

Monthly Blip

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

Thursday, 14 July 2011

Time Management

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

Wednesday, 13 July 2011

How it all started

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

Tuesday, 12 July 2011

An introduction

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