Tag Archives: CFS

Now Now Now!

18 Sep
I need a Jess calming device! Photo credit Morgue File User Pennywise

I need a Jess calming device! Photo credit Morgue File User Pennywise

Continuing my little journey through the psychology of Jess’ personality and ME/CFS: Now Now Now! This is my little phrase for the sense of urgency, do it now, franticness that engulfs me at times. Ok, that engulfs me all too often.

This Now, Now, Now way of being is why:

  • Yesterday morning my timer sounded telling me that my 20 minutes of computer time was up. Yet 10 minutes later I was still tapping away at the keyboard. I just.couldn’t.prize.myself.away…So much for my renewed resolve to step away from the computer…
  • There is a stack of US guidebooks on the coffee table (and Oz ones on our bookshelves) for the dream ‘I’m recovered’ holiday of a life time. I had to buy the books Now! As soon as Mr B and I had talked about the idea of an American road trip I just.had.to.buy.the.books NOW – Mr Amazon does very well out of me in this regard, my bank balance does not…
  • I got annoyed with Mr B when he moved the pile of clean socks off the bed onto the floor. I wanted him to put them away Now! (In my defence on this one, who keeps clean laundry on the floor?! My other half apparently…love you sweetie)
  • At 9pm at night, when I should be mid bed time relaxation routine floating in a bubble bath, I’m urging Mr B off the sofa to build the new lamp [insert any new item here] that had been delivered that day…(are you sensing I’m a delight to live with?!)
  • In the middle of my yoga practice I left my mat to look for Mr B’s ‘lost’ gym shorts despite him telling me ‘we’ll look later’ I just couldn’t not find them Now! It would eat away at me and suck the joy out of my yoga time if I didn’t (or at least that’s how I justified breaking my yoga practice to myself….)
  • Perusing food blogs one evening last week I came across a 1 minute chocolate cake in a mug recipe. Yep you guessed it, I had to make it immediately. And of course it took longer than 1 minute to make (especially when I managed to knock over the jar of cocoa powder in my haste…)

These are just a few examples of the crazy Now Now Now pattern that seems to have a strong hold over my body.

I need to slow down and stick to the ME/CFS speed limit! photo by Morgue File User Sioda

I need to slow down and stick to the ME/CFS speed limit! photo by Morgue File User Sioda

When I look back I can see how impulsive so many of my actions are. To be honest I cringe at my behaviour. With the wickedness of hindsight it embarrasses me. And yet in the moment, I am gripped, overwhelmed, enveloped, engulfed, trapped by this sense of urgency to such an extent that I don’t even realize it is happening in that moment. The realization only comes later with a little self reflection. My heart races, the feeling of pressure inside my chest is so strong, something is gripping me, it’s physical. I have to do it Now! Whatever IT might be. This all creates a great deal of internal stress (yep we’re back to that old chestnut, the old foe of ME/CFS).

Let’s just go back to the first example of this pattern that I describe above for a moment – the not stopping when my computer timer sounded. I was telling Mr B that this had happened, and he replied ‘that I was naughty’. And yes I guess I am. But pulling myself back and stopping is so very hard. I tried to explain to him just how physical the urge to carry on and finish what I was typing was. I noticed that as I explained this I clenched both my fists. I bent my fingers tight and my finger nails pressed sharply into my palms. My hands and forearms shook a little. And that is how it feels. I’ve got to do it Now! Now, Now, Now!

This Now Now Now behaviour flies in the face of every good management technique for ME/CFS. It is completely contradictory to the planning and pacing that makes up so much of my life. Wanting to build X, finish writing X, desiring Mr B to do X Now, Now, Now! is totally unhelpful to my recovery. It pushes me beyond my limits. It means I do more than I should, more than my body can handle and as a result the pain and fatigue increase. Not at all helpful. And not at all how I’d like to live.

Doing too much in answer to the Now Now Now demons drains me. It exacerbates my physical symptoms. But that is not the whole of it. The urgency of it all is not calming. It is highly and acutely stressful. As I say in the moment the urgency is generally so overwhelming I can’t see through it. It’s very much an unconscious pattern. On the rare occasion I catch myself mid flow it is such a battle with myself to step away, to stop, to pause, to breath deep, that the very act of trying to slow down is stressful. Yep the S word again. Stress Stress Stress…

I can see personality traits such as being a Type A pusher and hardworker, liking to be in control, all come into play and exacerbate the Now, Now Now tendency. I can see that these traits are holding me back from recovering my health. Like the obsessive thinking that I described last post, they are perpetuating patterns, contributing to my still being ill.

I also think there’s an element of wanting to do what you know can’t do. I know I have to take things slowly and steadily. I know I need to plan and pace. And a lot of the time I am very good at that. I think this Now Now Now tendency is almost my unconscious giving Me/CFS the two fingers and saying ‘try and stop me’! Of course Me/CFS always wins….And I need to control these frantic tendencies. NLP has a role to play here.

I will end this post by saying, I have gotten a lot better at noticing and stopping the Now Now Now. NLP has helped me with this. As has meditation and yoga, helping me tune into my body more and to feel generally calmer. I am a lot better at this than I used to be. Yep I used to be even worse. Same with the obsessive thinking. Now, how scary is that?!

If you missed my post about obsessive thinking and are keen for some more crazy Jess stories check out my last post here.

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?

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 🙂

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