What do you do all day?? My daily routine

27 Jul
Balance energy & activity. Photo credit: Morgue File user DiZel

Balance energy & activity. Photo credit: Morgue File user DiZel

In my last post I talked about my response to the question I often get asked ‘what do you do all day’. If you don’t have a chronic illness and are able to work and go out and about (lucky you), it is difficult to imagine how those of us unable to work or go out much because of a chronic illness like ME / CFS, fill our days.

My main activities are yoga, blog writing, reading, gentle walking and light cooking on better days and lots and lots of time spent resting with meditation tracks. But it is not as simple as that may sound. I have a daily routine that spaces out my activity and my rests. It’s all balanced so I do not exacerbate my symptoms and instead work gradually towards building up strength and energy. If you want to know more about how my daily programme was devised and the advantages of it for my ME / CFS please read my last post.

Here is My Daily Routine to Manage my ME/CFS

* @ times in bold are approximate just to give a clearer picture of my day. The exact times at which I do things is not particularly important, it is the pattern and sequence of rests and activity that matters.

** time durations given in italics are my current levels of function. I am working to increase these slowly through pacing.

Wake up ( @ 7am / 7.30 am* – take Enadh at least 30 minutes before breakfast)

BREAKFAST – (sit and take all meds & sups, saline solution etc all sorted evening before, then eat breakfast)

Physical medium high activity (make smoothie sitting down or tidy up kitchen standing) 15 minutes**

Physical medium low activity (clean teeth)

Rest – 15 minutes  (@ 9 am)

Mental high energy, (with light box, blogging) 20 minutes

Physical medium high (yoga) 25 minutes

Rest – 20 minutes (@  10.15 am)

Snack (aforementioned smoothie) & mental medium (light reading, internet time or Bananagrams)

Physical high  (shower)

Rest – 10 – 15 minutes (@ 12 noon)

Physical medium high (lunch prep sitting down)

LUNCH

Rest – 10 – 15 minutes ( @ 1. 30 pm)

Physical high (walk) 20 minutes

Rest – 40 – 50 minutes (@ 2.15 pm)

Physical or mental high (baking max 1x week, food prep lunches for week max 2 x week, dinner prep, or blog writing) 20 minutes

Snack & mental medium (internet or TV)

Rest – 10 – 15 minutes ( @ 4 pm)

Physical medium high (piano) 10 minutes

Physical medium high (yoga or stress release trembling leg exercises) 20 minutes

Rest – 20 – 30 minutes (@ 5pm)

Mental medium high / high (internet / blogging) 20 minutes

Physical medium high (dinner prep & unload dish washer) 20 minutes

Rest – 10 – 15 minutes (@ 6pm)

(Physical medium high – load washer)

Mental  low (tv or internet) whilst wait for Mr B to arrive home

DINNER 6.30 pm / 7 pm

Physical medium high (clear up from dinner) /mental medium supervise Mr B clearing up!!)

Physical medium (sort out my breakfast tray: pills, supplements, saline solution, soluble fibre, D-Ribose etc)

(Physical medium high – hang up washing/ mental medium supervise Mr B sorting washing!!)

Rest  10 – 15 minutes (if struggling and feel need it)

Mental low – TV watching / chatting with Mr B

Physical medium low (get ready for bed) 8.30 pm

Mental medium low (light reading or listen to music or mediation)

Lights out 10 pm – sleeeeeeeeeeeep 🙂 and then wake up and do it all again tomorrow 🙂

By sharing my routine in this post I am not saying that you should follow it. I’m also definitely not saying that if you follow it you will recover from ME / CFS. Chronic illness is personal and fluctuations between individuals with ME / CFS are vast. I’m merely posting my routine to show you one of my best tools for managing my ME / CFS.

Over to you: what do you do all day? How do you spend your days if you’re at home due to chronic illness? Have you been given advice about balancing energy and rest?

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26 Responses to “What do you do all day?? My daily routine”

  1. Ben D July 27, 2013 at 10:30 am #

    My daily routine is similar ish to yours except I spend more time resting. I’ve recently got back into reading which helps the hours pass quicker and have extended my daily walks a bit which I seem to be handling okay but feeling a bit more tired. Based on advice I’ve been given re: rest and routine, which led to a marked improvement in my condition, can I invite you to try taking a one hour lie down (flat in bed) after your breakfast activities then another hour flat after your yoga and shower. Also take another hour lying flat after your daily walk. It may be also worth extending your other rests to 30-45 mins. Maybe you could try this approach for 3 months and see how you get on. When I spent more time lying down flat, I noticed the improvement in about 4 months or so but started feeling in benefits within 2-3.

    I wish you and Mr B an enjoyable and wonderful weekend. All the best, Ben

    • myjourneythrume July 27, 2013 at 2:11 pm #

      Thanks for reading and commenting Ben. Hope you’re not melting in the warm weather. It’s good to hear you’ve found a routine that works for you. I’ve found the power rest model to be effective. On worse days I do extend my rests but my specialist always tells me it’s important to keep activity levels up so not to just purely rest. ME is so individualised, everyone finds something different helpful! Hope you’re having a good weekend.

      • Ben D July 27, 2013 at 10:00 pm #

        I’ve narrowly avoided melting today, thanks 🙂 Good to hear your power/rest model works and you’re right, ME is so individualised which I sometimes forget. Apologies, I shouldn’t really be prescribing my rest model for other people. Suddenly very tired this evening, literally have no energy. Maybe because I went out for supper Thursday evening over the road. My friend Emma popped over with Byron burgers for lunch which was a delicious treat, otherwise today has been uneventful and quiet. Enjoy rest of weekend.

  2. thehomeschoolingdoctor July 27, 2013 at 12:38 pm #

    I know you don’t need sympathy, but, man, I’m sending it anyway! Hope your weekend is nice. XOXO

    • myjourneythrume July 27, 2013 at 2:09 pm #

      awh thanks Terri. I appreciate sympathy greatly! Tho I do try and tell myself that things could be much worse. Hope you have a wonderful weekend with your family. Jx

  3. Hayley-Eszti July 27, 2013 at 7:51 pm #

    It’s interesting to see what your day to day life is like. I can’t wake up that early, I need at least 11 hours (normally more) if I don’t I have awful flu like/hangover symptoms the whole day. I spread meditation breaks out through the day and some days take a nap depending on how tired I am. I think I have a life like a dog – they don’t really do much, sleep, rest, and potter about with an occasional fun activity like a walk or game of fetch. (swap fetch for tea with friends)

    • myjourneythrume July 27, 2013 at 9:41 pm #

      The life of a dog, now that’s a good analogy. Tea with friends counts as the high spot of my week/ month as it sounds like it does for you too.at the start of my illness I slept for 11 hours + I couldn’t seem to get enough sleep. Now 8 or 9 hours seems to be the most I manage. And i also have the tendency to wake up stupidly early, like 5 am sometimes, then i feel like im hungover all day! No matter how long we sleep it’s never enough or refreshing is it? Ah the joys of ME/CFS!

  4. tiredtechie August 12, 2013 at 12:41 am #

    Many a time I’ve tried and failed to follow a schedule for myself. Things like insomnia or highly important football matches always seem to crop up and throw me off. So I generally just wing it. I’m told it’s not good to have variable meal times but I find it impossible to eat when I’m not hungry or to not eat when my blood sugar is plummeting.

    What are stress release trembling leg exercises?

    • myjourneythrume August 14, 2013 at 10:26 am #

      Lol, football does throw a spanner in the works for a routine! As did Wimbledon and the Tour De France. Schedule became, get done anything necessary so can spend afternoon watching coverage on tv resting on sofa! The exercise I mention involves laying on the floor on your back with your knees bent soles of the feet together and you hold your legs in that position at differing angles and as you relax waves of trembles and shakes pass through your legs and they wobble! Sounds odd but it releases the stress and tension in your hips, hamstrings and psoas muscles. It really clears your head. You need to ‘tire’ your legs a little beforehand, I often do it after I’ve done a little yoga.

      • tiredtechie August 21, 2013 at 12:58 am #

        Hmm, interesting. Do you mean you open your knees out and hold them at different points, or as far as they will go? I tried googling but didn’t find anything on it.

      • myjourneythrume August 21, 2013 at 3:13 pm #

        Hmmm, odd isn’t it?! I was taught it on an ME recovery course that I went on in Wales. Yes you’re right you open your knees out and hold them at different angles,holding them in those positions somehow releases the tension.It is very hard to explain!

      • tiredtechie August 31, 2013 at 7:07 am #

        Interesting. Lately I’ve been doing “yin yoga,” which is just holding gentle passive stretches for several minutes at a time. So relaxing! It probably does a similar thing.

        And sorry about the Mou’s loss today! OK, I’m not really that sorry but what a match! 🙂

      • myjourneythrume September 1, 2013 at 8:03 am #

        It was such a great match! We deserved to win haha, I would say that.

        I haven’t tried yin yoga something for me to look into, thanks!

  5. The Wild Rose Cottage August 17, 2013 at 11:00 pm #

    I love your routine! I too have to take frequent rests…ever since I gave myself permission to do that my CFS has been a lot less severe.

    • myjourneythrume August 18, 2013 at 6:33 am #

      Thank you! The rests are what get me through the day, without them I would be a MESS! I’m glad you’ve let yourself rest. I know how hard that is at first.

  6. Michelle September 18, 2013 at 1:11 pm #

    what a great idea, writing down what you do! i would put it up for my family and for myself. i need to remember to rest more throughout the day, i tend to over do things, especially when i feel good ~ which immediately makes me feel bad again

    • myjourneythrume September 18, 2013 at 2:18 pm #

      Yep I’m all too familiar with the boom and bust energy cycle. Having a routine of regular rest helps me not to overdo it on better days. But it’s still hard!

  7. someonesideaofluxury November 7, 2013 at 4:40 am #

    It is really interesting to read about your day.
    I tend to sleep longer at night and take a really long time to get going in the morning.
    I keep an activity chart but think I’ll map out a week or two like this to see how it looks, maybe see if I can find any opportunities for improvement.

    • myjourneythrume November 15, 2013 at 8:02 am #

      Glad you found my post helpful. I’ve found having a routine like this helps me keep going and helps me pace myself. Work out a routine that works for you and your sleep pattern and other habits and go from there. Keep it flexible. Good luck 🙂

      • Ash December 17, 2014 at 5:06 pm #

        Great blog entry and motivator. I have not managed to incorporate mini rests into my routine, just one hour lie down in the afternoons.
        How do you remember to stop an activity on time? I thought of using a timer but it would annoy me all day. Also I have 2 young Kids and even with a helper to do all the physical stuff I’m struggling with all the mental and emotional energy I have to give them. Aer there any mums out there recovering and how do you pace? I was getting much better this summer but overdid it w Christmas prep and have had setback. Annoyed with myself.

  8. Reni June 29, 2015 at 8:19 am #

    this is not really a life… so scary I was diagnosed with cfs recently I suspect it was with me for longer than a year but when worse after stressful job I had and some random viruses I caught but I can not imaging this is the way I will be living, I mean how can I afford living like this in this world? by just gently exercising, resting and eating all day. It is impossible:(

    • myjourneythrume August 2, 2015 at 4:32 pm #

      Hi Reni, your story sounds very similar to mine. I hope your health starts to improve for you. Take care and best wishes. Jess.

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