Sunday, 25 January 2015

Paying the price with my ME/CFS

My previous blog post was on the 2nd January and reading it back now, I was on such a high from the activity I had managed over New Year.  I was also aware at the time that I would probably have to pay the price at some point.  In fact I was on such a high and probably had so much adrenaline going through me when I came back from Copenhagen that the following morning I decided I could go and do a normal yoga class.  It was after that yoga class that my body decided it had had quite enough thank you very much and I fell or dropped (as that is how it feels) into a state of constant fatigue.  During this time, everything becomes such an effort and there are no reserves.  No reserves of energy to pull on and when you ask something of your body it just cannot respond.  It took until the 19th January before I started to feel anything like back to my "normal" and since then I have been VERY careful.  It's a delicate balance now and a case of rebuilding some sort of reserve by taking care of myself and making sure all my "recovery protocols" are in place.  January is always a busy month in our house with three birthdays in the space of two weeks and this month we have also been choosing a school for dear daughter 2 to do her A levels.  Fortunately, that decision has been made this weekend and that is one less thing for me to have to think about now.

One of the frustrations of having such little energy this month is that the lovely little exercise program that I had been doing and so enjoying, before Christmas - 2 yoga classes and one session on the exercise bike every week - has had to be put aside.  I worry about how long it will take me now to get back to being strong enough to be able to do this again.  How much has that wonderful New Year weekend away set me back?

All the more frustrating as my excellent Christmas present was a Kettler recumbent R exercise bike:

It looks like a bit of a beast and it is!  I love it and can't wait to get on it regularly.  Being recumbent keeps my heart rate down and I get almost instantaneous relief from painful quad muscles by "flushing through" my thigh muscles as I cycle.
It is electronic and I can program it in lots of different ways including by heart rate which will be useful.
 Right now I will just use no resistance and program for a certain amount of time.  It has a great ear clip heart rate monitor built in which works really well.  Young Ben is having lots of fun with it  and building his thigh muscles and stamina too!  I'm hopeful that this week I might be able to get back to it, but need to be cautious, I have to be patient as I know so well that exercise at the wrong time will just set me back further.  It is an annoying wait when you just want to get on and DO.

Friday, 2 January 2015

A Step up in Steps - the Fitbit keeps track

What a stupendous end to 2014.  A city break away in Copenhagen saw my past four days step count look like this:
Yes, on New Years Eve I walked 21,000 steps!  Even more impressive because of the 2 high step count days that preceded it.  Those first two days felt really good, my body coped well.  The 21,000 step day (which is 9 miles by the way) started well but became very challenging.  My legs were soooo tired  I was determined to push on as we were away on a holiday and  wanted to squeeze  as much as possible into our short break.  The thing that seems to work for me is taking lots of rests - some walking - sit down - more walking - sit down and so on, it definitely means I can go on for longer if I take this approach.
Did I feel good by the end of it?  No, of course not. At the end of each day, I arrived at the hotel room, got into the bed and stayed there (6.30pm on the first day)  BUT, so far I haven't had what I would call a relapse, so, I didn't get that horrible feeling where my pulse is racing out of control and my body feels like it is on the very edge and my nervous system feels so frail.  No, it didn't feel like that, I just felt weak and like I couldn't take another step a bit like how a marathon runner looks after crossing the line and needs to be supported.  I was supported, there were times when my family swooshed me up, one at each arm pulling me forward so all I had to do was literally lift my foot and there was a forward motion, or walking up steps with my hubby pushing from behind, it all helps!  I was touched by the children checking on how I was doing.  I don't want them to think I am any less able than them - that I find hard - but, it was nice to see them being so thoughtful, even little Ben at one point put his arm around me as I walked along to ask how I was doing.
The hardest point was probably yesterday at the airport with long walks to gates and lots of standing in line.  I know I have said this before, but it still surprises me that standing in line is harder for me than moving.  I understand now that this is probably due to pooling blood and do my best to keep moving by rotating ankles etc, but this too is hard of course if you are fatigued.
I realise of course that with the delayed fatigue that is so typical with M.E. I am not out of the woods yet, however, now I am at home I am more in control and can relax and do only what I need to do.  I can't help but think that all the yoga and recumbent cycling I have been doing for the past few months has really helped me unknowingly prepare for the past few days.  I hope I can continue with it and push my recovery on still further this year.
Tivoli Gardens early on New Years Eve.