Sunday, 28 April 2013

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.


  1. Sorry to hear you are having a bit of a relapse after a few days more active....

    On the plus side it is re-assuring to know that we can do a little extra sometimes. I was on holiday recently and averaged 1500 steps a day (for 4 days) instead of my usual 1000 - and after a week of rest (600 steps daily for a week) I am now back to where I was before. Yay.

    As for attending the meetings - I think you are so right to keep going. Perhaps you could ask for a break in the middle so you can all chat to each other a bit (kindred spirits etc.)

    Or perhaps you could suggest the leaders programme in a time for each person to share something they feel they have achieved? I went to a course run by Arthritis Care on Managing Chronic Illnesses and this was the best bit. Hearing about others challenges and what they were doing to face them was inspiring. This followed through each week and didn't have to be illness related. So some ladies were talking about finding time to make a call to a friend, or clean a messy cupboard, or even just to get up and dressed before a certain time in the day.

    Actually - A few of that group are meeting for lunch today... this is the 2nd gathering we've had since the course finished and I'm looking forward to meeting this group of strong people with weak bodies once again.

    Thinking of you and your family.... :-)

  2. PS - I've just nicked your ME/CFS awareness day image for my blog! ;-)

  3. Thanks Sally. I'm going to persevere with it and I think your idea of getting everyone to share something would be good to get the group talking, but they seem so paranoid about "not putting anyone on the spot" that they've gone too far the other way!