Do You Hear What I Hear?

Life living on a fine line is not really much fun. As I’ve mentioned, I will forever be grateful for the incredible strides I have made in my health – in terms of recovery, I have made steps that even I didn’t think would be possible again.

But every now and then I am reminded that I am still far from recovered, and that I have to continue to be careful and to monitor my health carefully. This morning I woke up with the first tell-tale sign that things are not going according to MY plans… the feeling that you didn’t sleep. I hate that feeling, but it’s one of those experiences that it probably pays to remember. It’s not as severe today as compared to previous times, I’m ok – but there is a marked difference between how I have been feeling and how I feel today.

We tend to question why when something like this happens. That’s natural, and in my opinion – when you have CFS/ME – necessary. In the last 3-4 weeks, I’ve begun integrating exercise and general activity back into my life. I haven’t been able to do this for the last 3.5 years, so I’ve been taking advantage of the opportunity, and working hard to re-establish some positive, healthy habits into my day-to-day life. Unfortunately, old habits die hard – and even with my careful approach, I may have allowed myself to overdo it.

Now, when I say “overdo it”, I am not saying that I have completely crashed. Over the years I have become very attuned to my body and can notice the slightest changes. So whilst I don’t feel very well today, I am grateful that I can recognize it and step into action NOW to avoid a crash later. What I do notice are the following signs:

* Yesterday I woke up with a searing headache. I had to take pain killers and go back to sleep in order to get rid of it

* I felt on edge, stressed and ‘frazzled’ yesterday, like my nerves were tingling all through my body. This included having a panic attack, and having a very short temper

* Today I woke up feeling unrefreshed from my sleep, even though I know I had enough. When I checked my stats from my Jawbone UP, it appears I had a very large percentage of light sleep and very little deep sleep. I recall reading that this is a common problem for people with CFS/ME.

* My inner ‘thermostat’ is feeling a little haywire – that feeling between cold and a fever – like your body doesn’t know which way to go

* Some nausea and generally feeling ‘unwell’ has returned

* I have some returned heaviness to my limbs, beyond the normal exercising reactions. I especially notice this when my arms become heavy & tired.

Because of the stress/nerves yesterday, I decided (even though I hadn’t planned on it) to go for a walk. I didn’t push, it was more a stroll, and I only went as far as I felt like – even stopping short of my usual distance. I thought, at the time, that it was just a low intensity walk, not for the purposes of exercise… (which in hindsight, is essentially how you would classify ALL of my ‘workouts’ at the moment – but I’d justified it that way in my head), and that the fresh air and sunshine would do me good.  But I can see now, that I was clearly ignoring markers that my body gave me – a message telling me to take it easy. Thank God I’ve picked up on it before things get worse and I do more damage!

You see, I’ve found that every day with CFS/ME is kind of a learning curve. Just when you think you’ve got it covered, something happens, or something appears or reappears that changes it all up on you. It stinks, but that’s how it is. I’m on a learning curve right now. I recently (in the last 4-6 weeks) felt like I could handle some form of regular exercise again. Not strenuous, but still… consistent. This is a big change from the past 3 years of nothing. Occasionally I’d try to pull out a walk and end up in bed for 2-3 days afterwards. This felt different. I left it for a couple of weeks, trying to figure out whether it was right, or whether it was just a short-lived stint of more energy. 3.5 weeks ago, I decided to give it a go and start integrating movement and exercise back into my life. My plan looks something like this:

* Once a week, I have been trying to up the intensity slightly by doing some short intervals of a jog (more like a power walk). This is roughly 20-60 seconds of higher intensity (depending on my energy level) followed by 2-3 minutes of low intensity/recovery. I’ve found on average I can manage this interval 3-6 times in the session before I call it a day (6 times has been my record, 3 the worst).

* I have been aiming to go 2-3 more times on top of this (a total of 3-4 sessions per week), just walking, and purely at a pace and for a length of time that suits me on the day. Sometimes it has been 15-20 minutes, a few times it has been 45 minutes. The pace is ridiculously slow, but my focus is on the habit and the consistency.

* I try to take 1 day between these workouts at least.

* In general, I just try to be a little more active in my day-to-day life – not so much sitting or laying and trying to add little bits of movement in. I have become quite sedentary over time.

In normal circumstances, I probably would have started with a goal of 1-2 sessions consistently. I suppose at the moment 2 sessions is my “base line”. I would be ok with not doing the 3^rd or 4^th sessions if my health so called for it. But I’ve been lucky enough that my feeling well has coincided with a 4 week break from university study – and I wanted to take advantage of that opportunity. This has given me a lot more time – to establish those sessions and rest accordingly afterward. It has really worked in my favour to do it this way.

So, what do I do now? It’s a good question, for which I can only guess the answer (and then use the trial and error method to see if I’m right). But right now, my initial plan is this…

·      I have assigned today as what I call a “bed day”. I can achieve the things that need to be done via my bed. The other stuff will have to wait. Perhaps this afternoon I will do a short errand run for the most urgent stuff, if it can’t possibly wait – but ultimately I think it will be ok (and I feel like I should refuse to go on errands merely to make this point to myself!). I have some work related paperwork to do, which I’ll do in small chunks between resting.

·      Some essential oils, some Epsom salts, a candle and a bath… throw on some relaxing music, and maybe a book to read… for me it’s all about creating that environment and space of time where my nerves can relax.

·      I won’t be exercising today – which I feel ho-hum about. I actually WANT to exercise. I have asked myself why I want to and come up with a few different reasons. Some of them – like being active and improving my fitness, and meeting my old attitudes, beliefs and expectations – will have to be put aside for today (& dealt with later!). Others – like fresh air and sunshine – can be achieved in other ways. After my soak later today, I think I’ll go sit outside in the fresh air for a bit. I can still get air and sunshine sitting.

·      Continue eating lots of healthy, fresh foods and avoiding sugar. Also eating meals that are not too heavy and taxing on my system.

So basically, I’m just gonna chill. Take a step back, relax, not stress, get some good rest, and see if I can reverse some of the damage (or at least minimize it) that I’ve managed to do by not listening to my body.

My next question is, what’s your body telling you right now? And are you listening?