What Do You Do All Day??

25 Jul
No time or energy for clock watching. Photo source Crass via Morgue File

No time or energy for clock watching. Photo source Crass via Morgue File

People often ask me “what do you do all day?”

This is a perfectly valid question. People don’t always grasp what it’s like to be at home all day everyday and not well enough to go out to work or in fact to go out much at all. And why would they? Until you live through this chronic illness at home existence, it is pretty alien to understand.

To me it seems the “what do you do all day” question generally implies one of two things:
– do you not get bored? It must be so boring being at home all the time…
– you’re so lucky (yes really) it must be great to be able to watch day time telly / do lots of things round the house…

I’ll deal with the second one first as that’s the more idiotic and deserves nothing short of a thorough stamping out. Firstly day time TV is the pits (save for when Wimbledon or the Tour De France is on wall to wall) Spend a few days watching endless chat shows, Location Location and Come Dine reruns and then you’ll reach boredom levels like never before. You’ll want to poke your eye out rather than turn on the TV. Trust me. I’ve been there. It makes you (well it makes me feel) depressed and desperate, two feelings I do my utmost to avoid.

That said day time TV has its place. For me it was the only thing I was capable of ‘doing’ in the first months of my illness. I literally didn’t have the energy to read a book so day time tv was on essentially as company and just washed over me (see I’m not contradicting myself, I wasn’t well enough to actively engage with the TV at that time). But once my head started to come back to life wall to wall day time TV was more than I could bare. Besides which too much screen / TV time gives me a very fuggy and tired head, that’s on a good day, on a bad day it can cause a full blown migraine headache. So yes, day time TV is not my first choice way of spending my time.

Day time TV rant over…moving on…

As for being able to do lots of things round the house. My answer to this is basically I WISH. I can barely unload the dishwasher without needing to have a rest. Washing my hair is a high energy activity. So doing lots of stuff around the house? Mmm not so much.

Now onto the boredom factor. Well my answer is simple. I don’t really have the time or energy to feel bored. When you have to break up your day with as many rests (lying down, blindfold on, noise cancellation headphones, meditation track filtering into my ears for 15 – 60 minutes at a time) as I need to get through the day in one piece, you honestly don’t have time to be bored. My days don’t drag. Time flies. It literally disappears.

So back to the question that sparked all this: what do I do all day?

Well folks, I have a daily routine that I follow day in day out on the days when I am just at home, which lets face it is most days.

If I do go out I bend and fit the routine around the outing. The outing becomes the only ‘activity’ that I do that day i.e. if at all possible I wouldn’t wash my hair or shave my legs (yes even shaving is tiring and no, I do not have super hairy legs) on a day I was going out. I’d have a really quick shower. Food prep would be at an absolute minimum with dinner being something from the freezer and simply reheated. I wouldn’t go out for a walk. I would rest more and take it as easy as possible. I’d have a bath before bed to relax my muscles. I would go to bed even earlier than I do usually. Depending on what the outing was, this reduced routine would be the case for the the day before, day of and at least one day after.

My specialist and his team of therapists devised my daily routine. It is not a random timetable. Different types (physical or mental) and levels (high energy, medium, low energy etc) of activities are spread throughout the day to not over tire me either physically or mentally. This structure is based on my stamina, energy and pacing levels as well as my main crash points in the day.

Where rest is concerned the idea is that rest is used primarily to prevent crashes rather than to soak up the after effects of doing too much; though of course it plays a role there too. And rest has to be proper rest. TV watching is not rest and neither is surprisingly is sleep. Proper rest is real neurological rest where you slow the thoughts in your mind through meditation – yes really! Don’t laugh or knock it until you’ve tried it. Before I got sick with ME/CFS I was anything but your meditating yogi. As a corporate lawyer I thought meditation was only for ‘hippies’. How wrong was I! Meditation is now recognized as part of modern medicine and a crucial tool in calming your mind and thus calming your autonomic nervous system which is vital for real restorative rest so necessary to those of us with ME / CFS.

Enough about rest for now. I’ll do a full post on that some time very soon.

Back to my daily routine. Although it is my daily schedule and I follow it closely, it is not set in stone. It has room to flex and flow as and when my symptoms demand it. It allows for paced time increases in the ‘activity slots’. It allows for good days (more higher energy activities) and it allows for bad days (fewer high and medium high energy activities and more medium and low energy activities).

I have some modicum of control over my ME/CFS thanks to this routine. With its daily structure and the all important rests positioned at the times I need, I can prevent crashes and flare ups more than I can without this routine. As with everything with ME/CFS the routine isn’t a cure, it is merely symptom management but I can safely say that without it I would be in a much worse state.

As I seem to have waffled for longer than I intended, I think I’ll leave setting out my routine for my next post. Can you handle the suspense?!! Hope so 🙂


6 Responses to “What Do You Do All Day??”

  1. dandeliondance July 25, 2013 at 3:37 pm #

    Great explanation! “What do you do all day?” is one of the questions that I get a lot, either implicitly or directly, and I am adding it to my List-of-Questions.

    I want to come up with a few succinct responses to these questions that I can have ready in my mind. The responses need to be short and directly express what I am hoping the other person can understand. I think that coming up with responses will help keep me from getting emotional or defensive (responding with sarcasm or dismissiveness), and might actually bring some understanding and empathy.

    Until then, though… I’ll just direct people to your blog ;)! I really appreciate your commitment to voice what you are going through. It really, really helps me.

    • myjourneythrume July 25, 2013 at 9:30 pm #

      Awh thank you for such a nice comment. I’m pleased that my blog is helping you. I know exactly what you mean about being defensive to questions, I’m the same sometimes. I often think of the perfect answer hours after being asked which isn’t particularly helpful. I’m hoping blogging will help me form coherent answers in the moment of questioning rather than too late!

  2. Hayley-Eszti July 27, 2013 at 7:40 pm #

    Daytime TV really does suck I agree. I hate it when people say the ‘you are lucky you can watch tv/films all day and stay in bed’ line, it just shows they really haven’t thought about what it really is like at all. I don’t really get bored, I mean my life is boring granted but I don’t spend each day looking at the clock, I guess I’ve just got used to it.

    • myjourneythrume July 27, 2013 at 7:47 pm #

      That’s exactly it, I’ve got used to it too. My life isn’t exciting and probably seems incredibly boring to others but right now it’s what my body needs and you know what, it could be a lot worse!


  1. What do you do all day?? My daily routine | my journey thru M.E. - July 27, 2013

    […] my last post I talked about my response to the question I often get asked ‘what do you do all day’. […]

  2. Step away from the computer! | my journey thru M.E. - August 30, 2013

    […] And yes to some extent that may be true. This is why I have a daily routine with a set sequence of timed activity and rest. The whole point of pacing is to prevent slip ups like this ‘computer-gate’ incident; […]

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: