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.

Sunday, 14 April 2013

With energy comes positivity

I awoke with some energy this morning.  It was quite a good nights sleep.  I was full of ideas and vibrant.  Ant said he liked it when I have a relapse and things are quieter and I'm not constantly coming up with ideas of things to do!  We laughed.  Anyway I then had to Sauna, shower and do my Perrin massage and by the end of all that the energy had gone.  Not a problem, after a busy day yesterday and a normal week ahead, I had planned to do pretty much nothing today.
Yesterday was such a lovely day.  Ant and I went shopping together in the morning, something we very rarely do together, we bumped into the family of someone he works with.  After lunch I had a drink with someone else who has ME, it's so nice to speak to someone who has an instant understanding.  There's no need to explain anything, they just know.
Later, I took My youngest (Ben) to a children's concert which gave me extra inspiration to practice my bassoon.  I must push on with that.  We bumped into more people we know.
Then, to finish this very social and enjoyable day Ant and I went out early to the local French Bistro and had a relaxed and delicious meal.
It just amazes me how positivity returns with energy.  Yesterday I felt I could conquer not just ME but the world.  What a difference the return of a little energy makes.
On Friday two kind neighbours both called to let me know that they'd heard that the local health centre was running a course abut managing ME and still had some spaces left.  I made some enquiries and discovered it is a 5 week group course using cognitive behavioural therapy to help manage systems and I've booked myself on.  It starts tomorrow.

Saturday, 13 April 2013

Feeling Good

I've had such a lovely day today.  I've had plenty of energy.  My energy level feels like its back to where it was before this most recent blip.  I've only done 3874 steps today, quite low for me, a good 1000 under an average day, but it has included a trip out this morning, a visit to a friends for a chat, an afternoon concert with two of the children and a lovely relaxed meal out with Ant.  I can't write more now as its 22.20 and this is my second late night in a row.  I need to go to sleep, but I will write more tomorrow.

Wednesday, 3 April 2013


It's easier to look back retrospectively and piece together what's gone on.  I now think that the relapse that I had over a week ago was not down to the osteopathic treatment I had but down to a stomach bug that continued on through the family affecting son and hubby after me.  All the symptoms; nausea,  general weakness and bowel disturbance, were all things I associated with the early days of  Perrin technique.  The big difference was that within two or three days of a treatment I was getting back to normal, but this time it took MUCH longer.  So, it is confirmation that I'm now able to "catch" things, having had a cold and a stomach bug now.  After the stomach bug however it is apparent that recovering from these things is going to be a bit different from days before ME.  My energy levels were completely wiped out and took a long time to return.  Only in the past few days have I begun to feel like my energy was returning.  In true boom and bust style I then went completely bonkers yesterday.  I drove the girls across town to a shop, then drove to another part of town to go to a different shop.  I then walked down to the village with my little one and back again in the not most direct route.  What was I thinking?  Knew I had overdone it and spent the rest of the afternoon on the sofa.  Ant then had to come home (6.45pm) and cook the dinner and take DD1 out to her social event in the evening.  I feel bad about that after he's had a long day in the office.
Last night I was woken with some of the horrible night time symptoms I used to get in the early days;    Hot and sweating, heart racing and clammy feet.  In the old days that would have been followed by feeling cold and uncontrollable shaking.  Thankfully neither of these things happenned.  I watched some video in bed on my iPad and tried to take my mind off it whilst I waited for it to pass.
This morning I feel weak, so what of today's plans?  We were due to drive half an hour to visit friends, a short walk by the river, then back for lunch at their house.  I should probably cancel, but I  won't.  It's been ages since we've seen them.  I'll just do nothing until we have to leave and play it by ear when we get there.
Something strange happenned when I was recovering from the stomach bug, I had 4 really good nights sleep!  It felt wonderful,  for 4 nights in a row I woke only once during the night instead of my 2 or 3 times and the sleep felt very deep.  This sleep was still unrefreshing, but it still felt so good to have slept so solidly.  I was disappointed when this run of sleep came to an end and have been trying to think what might have been the factors that made such a difference.
There are several theories about what causes the sleep disturbances in ME.  There may be some dysregulation of the hormones dopomine and seratonin as we know that the endocrine system which produces them is often dysfunctional in people with ME.   I like this description from the website:
"If the sympathetic and parasympathetic are out of balance due to autonomic dysfunction, it could put you in a state of heightened arousal and awareness when you're trying to sleep. It's a lot like how a   new parent is always on alert for a crying baby, never really getting into a good, deep sleep."  That's how it feels to me.