Wednesday, 30 November 2011


Whoops #1)  Announcing a new blog and twitter account - then not touching them for two whole weeks.
Whoops #2)  Not being strict about the rest schedule at weekends.
Whoops #3)  Travelling to and from Bradford for a full day's conference/training.  It was utterly brilliant and fascinating, but exhausting.
Whoops #4)  Following up the training day with a day's rest, a day's cleaning, then three days of my parents' company in my own home.   (NB I love my parents dearly, and enjoy their company.  It was a wonderful few days, but I overdid things anyway.)

If nothing else, the last week and a half has really brought home the importance of being consistent with the rest and energy regime.  Consistency is not my forte, but I will have to learn it, and make it so, if I really want to improve long term, or I can see that I will simply feel better for a while, then relapse...  feel better for a while, then relapse.

The biggest concern I have with this are the big trade shows I attend for work.  I'm definitely scheduled in for one large one and one smaller next year, with applications in for two more 'biggies'.  Will I be well enough to account for such exceptional events, or am I just shooting myself in the foot?

Wednesday, 16 November 2011

Warmth and guilt

Today, my work is mostly brain-based, and sitting down.  The heating is on.

Growing up, the mantra was, "Put a(nother) jumper on!".  We used to joke that Dad had the central heating tuned so that he could tell if we turned the radiators on.  I had poor circulation, and felt the cold quite badly, but thanks to this training, became quite used to being a bit chilly.  I would never turn the heating for 'just me' until I became significantly uncomfortable - I felt guilty for wasting the money, wasting energy, destroying the planet.

Here's the thing, though: getting cold is very tiring!  Not only does your body have to do actual work, burning reserves to keep you warm, but your muscles will tense up, too.  Arms, belly, shoulders: all become tight and cramped.  News: that's effort!

A few years ago, a life coach said I should "Aspire to excellence in self-care".  For a start, that blows the 'just me' argument out of the water: I deserve the same comfort I would give to guests - and that includes keeping warm.  So I put the heating on whenever I feel the need.  But that's not all, of course: if you want to keep the thermostat down a notch or two, or if you have no heating, here's a list of my fave chill-busting tactics:
  • Sit under a blanket, with a hot water bottle if you like (pets will often help out here: in this house, you will quickly be joined by a dog if you bring out the blankets).
  • Put down a rug and wear some mitts!  The temperature of your hands and feet is incredibly influential to the way you feel.  I often type wearing fingerless mitts, and if you have laminate floor covering concrete, the chill can strike through even your shoes quite quickly.  (I have been known to bury my feet in the dog's beanbag to keep the tootsies warm).
  • Hot drinks are my constant companion, even now I've kicked the caffeine.  Cayenne pepper tea (a tiny amount, enough to cover your little finger nail, in a mug of boiling water) is a good one if you don't want caffeine/dairy/sugar, and it's warming due to the spiciness as well as the hot water.
  • Eat regularly - keep the internal boiler stoked!
  • Move around if you can, at least occasionally.  OK, you don't really want to leave your nice warm blanket-nest, but keeping your circulation moving will really, truly help.
And if you're still feeling guilty?  I try to remember that this journey is moving towards wellness.  I don't run around like a mad thing and expect to get better, or attempt to lose weight quickly and get better - both those things stress the body out too much for recovery.  Since being too cold is a stress on the body, why should I expect to spend my days feeling chilly - and still get better?  (Besides, being ill is expensive.  We may have the NHS in this country, but you start adding up the costs of lost working days, prescription charges, supplements/alternative remedies, paying for people to do the jobs you can't, extra considerations when travelling or on holiday - it adds up.  Investing a few pennies now in staying warmer is alright in my book).

Tuesday, 15 November 2011

One week in.

It's been one whole week now since I saw the occupational therapist.  I'm slowly building a habit of resting three times a day - though I'm not sure I'm always staying awake.  It can be hard to tell, with meditation CDs.

Today I have been unfocussed, itchy-in-the-brain.  I have paid work to do which requires thinking, and I haven't quite managed to get stuck in.  But then, I've been having a rough time recently, so maybe I'm just building up the energy required to do the actual, you know, thinking thing again.  I still have a rough time remembering that thinking requires energy, and that I can deplete myself just by concentrating for too long.

Monday, 14 November 2011

Needing a rest

I've never thought I "needed a rest" when performing everyday activities.  I am, by nature, a push-until-I-can't kind of person (which is probably part of how I ended up like this in the first place).  Needing a rest, to me, sounds like 'inability to continue'.   And pretty much nothing has made me feel like that, from the very first.  (OK, climbing back up the cliffs at Port Mulgrave had me whimpering, and if begging would have reduced the effort required, I would have begged for it to stop, but that is a long time ago now.)  But following Friday's mopping incident, I've been rethinking that assumption.

Today, I was changing the bedlinen.  Super-king-size duvets are not heavy, per se, but they are bulky and large and just plain uncooperative.  Suddenly, I realised that I was wobbling on my feet, that my heart was pounding, and I was heading into a state of mind that I recognise well: impatient, antsy, frantic to finish.  It is a precursor to clumsiness; a state of mind in which I will get angrily tearful that inanimate objects will not do what I want, dammit.  (Perfectly rational, then).

So I laid down on the (partially made) bed, and let my body come back to itself.  Let my heart slow, felt the shaking in my limbs abate.  Waited until the emptiness left by the shaking filled up with something more substantial.  Then, I finished making the bed.

Yes, I needed a rest.

Friday, 11 November 2011

Impact vs. duration

I left something out in my 'first visit' post: the Energy Measure sheet.  This is something I need to fill in once I have at least a week's worth of activity diaries under my belt, and it was something I had difficulty understanding during my consultation.

It works like this: I have to look back through my activity diary, and categorise my activities as high, medium or low energy requirements.  The examples given were things like, "Blogging: 30 minutes", or "Mowing the lawn: 10 minutes".  And my scientific, logical brain was refusing to take in the time component as a valid part of the entry.  Surely, if "mowing the lawn" is high in energy requirement, it's high whether I do 10 minutes or 20 or 30?

I've forgotten, now, the words my consultant used to explain it to me.  One sentence made it all so clear: it's about limits.  If I do too much of any one activity, I cross a limit, head into meltdown, and crash.  Two lots of ten minutes can be lower in total requirements than one lot of 20 - as I discovered today.

Mopping the floors
Mopping is a Friday morning activity.  We have two enthusiastic dogs (and one of them has drool like raw egg white), so mopping has to be done fairly regularly.  Sweeping (a daily chore; see 'dogs', above) is normally an evening task.  Which I did not do yesterday (Thursday).

I felt pretty awesome this morning, so I set about sweeping, then mopping, the downstairs floors.  (Do not attempt to mop an unswept floor in a house of dogs.  It gets nasty).  It turns out that doing both tasks one after the other is too much.  Neither job is particularly onerous on its own, though mopping is definitely harder work than sweeping.  Both jobs together, though, exhausted me.  By the time I was done, I was weak, shaking, kinda confused - and the knock on effects have lasted all day.  At no point have I recovered the 'awesome' I felt this morning.

Lesson for the day: 1 + 1 != 2, at least in the world of energy requirements.

Tuesday, 8 November 2011

The first visit

Today I visited the Peterborough ME/CFS clinic for the first time.  I allowed plenty of time to get there, according to the GPS, but the final directions weren't too clear, and I had to try three or four industrial estates/shopping areas before I found the right place.

Right away, I felt like an impostor: "Would you prefer the stairs or the lift?" asked the counsellor, in a quiet, solicitous voice.  "Errm, the stairs will be fine," I stammered.  I have it easy.  After all, I had driven myself there.

I had at least an hour and a half of consultation, during which I cried at least half the time.  (This is par for the course for me and counsellors: I'm not generally a weepy person, but for some reason, the whole 'opening up' process just makes me leak at the eyes in an uncontrollable fashion.)  "What is upsetting you most, right now?" she asked.  I'm still not sure what the right answer was, but I said something about being scared that I was going to be told that there was nothing wrong with me; that I was lazy, and should just pull myself together, and get on with it.  (Certainly a true worry for me).  My fears were unfounded.

I could say a lot more, but - the outcome?  I have to keep an activity diary for the next few months.  I also have to record my energy levels three times a day, with an intention of keeping them stable both within a day, and from one day to the next.  My levels don't have to be high, just stable: this is about finding a baseline, and working to stick to it.

Also, I have to rest three times a day: 15 minutes in the morning and afternoon, and half an hour at lunchtime.  My definition of  'resting' has been radically updated: no television, audio books, internet, knitting...  I'm not sure I can find that much nothing to do in a day!  But I will try.  I have fought for this referral: I'm not about to disregard anything they tell me.

Oh, and I have to avoid 'cognitive activity' (reading, listening to audiobooks, watching television) for an hour before bed, too.  That's going to be *very* hard.