Saturday, 28 June 2014

Another big day

I checked out my fitbit yesterday and it is tracking steps properly, I just needed to make sure.  Today the fitbit clocked up an amazing 11,490 steps!  These steps were the result of taking "the eldest one" to an open day at the university of Birmingham and walking all over the campus all day long.
I am in bed and exhausted, but exhausted in a good way.  A smile came over me earlier today when I realised I was actually "sleepy" tired.  Properly tired, not fatigued.  I can probably count on one hand the number of times I have felt like that since the start of my ME nearly 5 years ago.  It is the activity of the day that has made me tired.
Yet again today my leg muscles and hip joints have been crying out to me and have at some points been quite painful.  Climbing stairs was particularly hard, but at no time did I feel ill.
Even after all that activity, I managed to come home and read a bedtime story to the littlest one.  This might not sound like such a big deal, but on previous days (many of them) when I have been fatigued, reading a bed time story has been beyond me.  It might be difficult for someone without ME to understand the effort involved in just reading out loud.  Those who have experienced this type of fatigue will understand what is required to first read and then speak the words out loud when your body feels it has no energy to do so.  It has been too much, but today even after my 11,490 steps and eating dinner and managing to hold a conversation at the dinner table (often also not possible at the end of a long day), I still managed -and enjoyed- reading the bedtime story.
In addition, The busyness of the morning meant I forgot to take my heart medicine and I checked my heart rate throughout this busy day to find to my surprise that it was actually okay.  Normally one of the first symptoms of fatigue is my heart rate rising and today that didn't happen.
I find myself in some state of disbelief about what's happening with my body at the moment.  I'm still part waiting for a fall from these heady heights.  It has been 3 weeks and a day now.
Tomorrow I go on a well timed six day meditation retreat.

Thursday, 26 June 2014

Still Going..

I'm beginning to wonder if my FITBIT is actually working properly!  My current rolling 7 day steps total is just over 51,000 steps.  On Tuesday I was in Wimbledon - hard work with the travelling.  Yesterday was supposed to be a quiet recovery day but I managed to clock up over 8000 steps and today I have 9137.
I really don't know what's going on or what to do for the best.  My back has sorted itself out, but my thighs are complaining about all this use they are getting, but I don't feel ill.  Don't get me wrong, I'm not about to jog around the block, but something is different.
I think it's a good thing my meditation retreat is in 3 days as this will force me to slow down and let my body have a rest and see how it feels.  I am actually thinking that these figures are so unusual that my fitbit might not be clocking them up correctly, I hope that's not the case.  I might have to do some testing tomorrow.

Wednesday, 25 June 2014

Recovery time needed.

For the past two and a half weeks my body has done everything I've asked of it.  Yesterday however was just a push too far.  I had a wonderful day in Wimbledon, perfect weather, perfect tennis and perfect company (you know who you are), but I made a foolish schoolgirl error by thinking I could walk from the tube station to the courts wearing a backpack.  I am not yet invincible it seems.
I made it to the courts, but by the time we got there my legs were crying out to me and I had to sit down.  Then the heat got to me and I had to seek shelter.  Once we were in our centre court seats and preparing to watch Rafa et al things felt better.
Besides the walk carrying the heavy lunch bag, it was noticeable that standing in slow moving queues and standing on the tube trains was hardest, this will be due to Orthostatic intolerance, whilst I was sat watching the matches though my heart rate was good yesterday.
Travel disruptions on the way home made the journey home harder than was necessary.
It was a great day, but today I can feel that internal fragility and agitation that I associate with my particular ME symptoms..  My body doesn't want to get out of bed this morning and my thighs are "burning".  I will try and have as easy a day as possible and give myself some recovery time.  I could do with my 6 day meditation retreat starting today really, but I only have 4 days to wait.
Was it worth it, would I do it all again tomorrow?, YES.
I feel an essay title coming on:
If you have ME and find you have energy, do you do nothing and let that energy work on repairing your body or do you go out there and do all those things you want/love to do?  Discuss.

Sunday, 22 June 2014

Can my body keep up?

"How are you doing?" somebody who hadn't seen me since March asked yesterday "Good"  I heard myself saying "Very Good" and this time I meant it.  It wasn't an empty "fine thanks" or "okay", my normal, - you don't really want to know - answers.  Yesterday was my 16th day in a row of feeling good.

Today is a little different, I still "feel" well, I don't feel ill, but my body feels like it's struggling to keep up.  My back is aching like mad and has been since last Wednesday, but it was a bit worse this morning.  I'm not sure what's caused that.  My thigh muscles are crying out to me and my knees aching.  For some reason my thigh muscles keep completely tightening up.  My physio and Ant have been massaging them for me at regular intervals - which is painful, but makes it better.  The tight muscles have the knock on effect of making my knees ache.  It feels like my body is falling apart, but I feel well - a strange contradiction, but I can understand after almost five years of not being able to do very much, for the past two weeks I have been asking a lot more of my body and parts of it are complaining!  I'm hoping that what I'm feeling here is deconditioning, but I don't know that, it could be that by pushing through I'm going to make things worse.  With this slightly in mind I have tried to have an easier day today, lots of sitting around in the garden reading books.  I've still managed to clock up 5400 steps, but that is a step down from my current 6884 daily average.

Tuesday, 17 June 2014

Using the Fitbit with ME

Got my  official weekly FITBIT stats by email this morning and this weeks figure is: 52,190 steps, that's an average of 7,456 steps a day.  Interestingly my highest day of the week was Thursday, before I went away to the beach.  I did 9,680 that day.  To put those figures into context, an average week for me is around 35,000 steps and the recommended number of steps that a healthy person should aim for is 10,000 steps a day.  I am pleased and in some state of disbelief.  I feel I am subconsciously waiting for the crash now, but I am trying to put that out of mind and retain a positive but sensible attitude.
The Fitbit is great for monitoring this sort of activity, I knew I was doing well, but I am the sort of person who likes facts and figures and the Fitbit provides these well.  I am going to start focusing on another aspect of the fitbits information a bit more now and that is the breakdown of how many minutes I spend sedintary, lightly active, fairly active or very active - it would be great to see some movement in those figures.

Monday, 16 June 2014

Great week of energy

It's been a really great week for me.  I started feeling good a week ago Friday and today is Monday! That is nine consecutive days of feeling good.  I can't remember the last time that happenned, but it certainly hasn't happenned since last summer, so this is huge. What makes this even more remarkable is that I haven't just been plodding around the house and garden having "baseline" days, I have actually been putting my body through quite a hard time.  I did have a couple of evenings last week where by 7pm I was fatigued and needed to do nothing - eat and go to bed - , but by the morning I was fine again.

 My 7 day rolling steps figure at the moment is 48,918.  My normal baseline is 5000 steps a day which would make my normal 7 day rolling figure around 35,000, so that's a big increase over a week. That figure has been pushed up by a weekend trip to the beach, where it was a long walk to the car, toilets, ice cream shop and sea! Not only lots of walking, but lots of walking on sand - not the easiest. As we've only just got back from the wekend I guess I could still get my delayed post exertional malaise tomorrow or Wednesday, I'll have to wait and see. Even if I do, the amount i'd done even before the weekend was much more than I have been doing recently and I managed it well.

 So, I guess the question is, what has made the difference? I wish I knew. Could it just be a cummulative effect of all the measures I've been putting in place finally paying off? Could it be that I'm having a length of time where my hormones are all settled? I'm eating well, but then I normally do. I'm not sleeping any better, still waking in the night and early in the morning. I'm meditating when I can and using mantras alot, alot more than I have in the past. I can't put my finger on anything in particular. If anything if been taking less supplements than I usually do, inspired by David Agnus's book "The End of Illness" to try and get all my nutritional goodness from my food.

 Trying not to overdo it today, but coming back from a weekend away means there is lots to be done. I've showered, unpacked, done 2 lots of washing so far, organised some school work for my son and filled in a visa application, been to the supermarket to get food in and made lunch, so my quiet day at home hasn't really panned out that way yet.

Sunday, 8 June 2014

Feeling good and reading

Yay!  I feel good!  This is day 3 now of feeling good and it's happening over a weekend : )
I have no idea why, but I'm just going to enjoy it.  I did 7700 steps on Friday and had quite a late night for me (11pm), felt fine, in fact good, yesterday and then expected to wake up feeling fatigued this morning, but it hasn't happened.  I have been to the supermarket, had a shower, prepared some food and tidied up a little bit all by 12pm.  Ready for a good sit down now, but that's ok.
I'm going to try and fit an extra yoga class in this week if I can.  One good thing is that I'm managing to do a bit more reading and I am reading some very interesting books right now:

  1. Get The Life You Love Now - Phil Parker.  I'm reading this one because Phil Parker is the chap who devised The Lightening Process and I thought it might give an insight into the process and it does.  The beginning of the book where he talks about retraining the neurons in the brain is very interesting.
  2. Anatomy of the Spirit - Caroline Myss.  Only a short way into this one.  It is about the interconnectedness of mind, body and spirit an idea of which I am already a convert.  The cover says that it is about taking responsibility for our health and our healing.
  3. The End of Illness - Dr David B. Agus.  I'm in two minds about this book,  not sure what I think of it yet, so i'll reserve judgement until I've finished it.
I am enjoying reading again.  My brain seems capable right now.