Not sure whether to go out or not...

Blog entry posted by lior, Feb 22, 2018.

...or to undertake an activity or to rest instead, etc.
This is, according to guidance of my CFS clinic, something that happens before treatment begins.
I think the idea is that I'm meant to plan my activity levels in advance and just stick to it.

I haven't got my head around this yet. I had been doing ok with doing very little - small amounts of yoga, going out for a short walk to a local cafe, around the same time every day. A good routine which I was managing to keep up.

But I wasn't managing to move forward with applications for support that I need.
So I pushed myself to get some stuff done. That was the 'boom'.
Then the 'bust' comes for 2 days after.
And when I have to go to therapy the other side of the city on a 'bust' day, I REALLY 'bust'.

I feel so drained. Depleted. Sleep isn't enough. Rest isn't helping as much as it does normally.

Then I don't know whether I should go out or not. Do I stick to the routine of going out? Or do I take more rest to recover?
I know that doing something when I'm already energyless makes things worse.
I also know that I'm meant to keep up a level of activity.
I have arguments to support both options. So what's the best thing to do?

I went out anyway today, for a shorter time than normal.
I got very cold and the whole thing made me tense. Walking was a bit harder than normal.
Now I'm taking an extra-long rest, and trying to not sleep.

When I was well, if I got ill with a cold or flu or whatever, sleep would sort me out.
Now I have ME, I'm not sure whether I should do the same thing, because sleep during the day disrupts the routine I've set up. I get ill with colds or flu frequently. I don't know if I'm suffering for longer because I'm not sleeping more. And then on the times I do sleep to try and get rid of the virus, it briefly disrupts how easily I can get to sleep... though this particular cold, I haven't been able to breathe at night because of sinus problems so I'm sleep deprived.

To sleep or not to sleep?
To go out or not to go out?

I would really like better 'rules of thumb' to know what to do in these situations. The old rules of when I was well don't apply. It was simpler when it was a case of if you feel ill, just rest. Now I feel ill so much of the time, but I've been told to make sure I do activity every day.

I would really like guidance from a source I can trust. But I'm not sure who I can trust.

I've heard from so many sources that it's unlikely I'd get better. I've also heard from many sources that if I believe I will get better, then I will. Do I give myself false hope? Or do I accept this is how things are - this is what my life is now?

What's the in-between? How can I believe I will get better, as well as accepting that it's possible (or likely) I'll stay unwell? The stats don't look good, but I've heard more recovery stories through friends than I've heard about people staying ill. Accepting requires giving up hope. Acceptance is meant to help on the process to recovery. But so is hope!

I'm confused, and conflicted. I'm not able to be as rational as normal so I'm not able to keep track of what works exactly.
However I do think that not-trying brought me more peace and stability than trying.
I have a tendency to reach, to push, and that's what makes me boom and bust. Such a driven, motivated person - it worked for me so well in my career. But it's a toxic trait for me in my circumstance now. Everything's upside down. What was good is now bad.

But does not-trying mean I should not go out, and sleep more, when I am in a 'bust'? Should I rest more in a 'bust' or not? Surely not-trying doesn't include the need to try to stick to a routine.

I wish I could have treatment sooner rather than later to know what to do.

I'm meant to rein in activity until I stop booming and busting. I did that, until I tried to get support I needed. I don't know how to not over-exert. It seems to be more over-exertion if I ask for help from friends than if I do it alone. I imagined it would be difficult but only a short phase to get benefits and things set up. It's dragging on for months and months because it comes at the cost of making me boom and bust which makes things worse.

I feel trapped. If I was well this applying for benefits would be so easy, and it would be not this much of a big deal. I still sometimes doubt myself, not believing that it's this difficult. But every time I make progress, I feel worse in my health because of the work it took - and it comes the next day and affects me for a while.

I wish I knew the best way to look after myself, so I don't have to keep going over these same decisions, so regularly, and never knowing if I've made the right choice until later.
Pen2, Starsister, ChrisD and 2 others like this.

About the Author

ME/CFS since Sept 16. Eccentric. Designer. Writes and draws in cafes when possible.
  1. lior
    Oh I'm sorry @Pen2 that you cried... sorry you feel upset. But I'm glad you know you're not the only one struggling with this.

    Today I have pushed and looked at my budget, and done some benefits calculations. It's quite scary to think about my future. I don't know when I might be able to work again. And I don't know how much benefits will be able to support me. I don't know what will happen when I run out of money. The Citizens Advice lady - I didn't really feel that she was on my side. There are so many unknowns.

    Today I feel ok because I drank coffee. That makes me feel better. And it means that tonight it will be difficult to get to sleep, and tomorrow will be difficult - a 'bust'. I hate being in this situation with my health and the difficulty in getting support because of my health. I can't win.
  2. Pen2
    So well stated @lior that this made me cry. How many times have I and I'm sure others felt, feel this way. There is no easy answer... Trying too much, doing too much with ME has not worked for me. Yet I wonder if doing something that's fun is worth the crash... I need laughter, being at a beautiful quiet place with someone I enjoy being with. Enjoyment, even if short and simple. That's what I feel like I'm going to do for now. This is just me. I really understand how you're feeling. I hope you will at least get back to your short walks and a little yoga. If you can, maybe that's all you need, maybe with someone you like being around. Wishing you the best. @lior.
    Wow, this really touched me. Thank you.
    lior likes this.
  3. lior
    Thanks for the insights :)

    I have to confess another fear. Some things I've read say that there are behaviours that keep people unwell. Lots of people on PR have been unwell for a very long time. If you are doing something that's keeping you unwell, you're not going to realise it's the case, or you would not be doing that thing. So there may be things you say are working for you, but in actual fact are keeping you unwell.

    So because of that, I'm a bit distrustful of everyone's experience who is still unwell, as well as my own - because I might be doing something that's bad for me without realising.
    Pen2 likes this.
  4. Starsister
    After 35 years of it, I think sometimes we just have to trust our own intuition about how much to do when. I've done things I'm not suppose to do theoretically, and not just been fine but better. There just are no rules to go by unfortunately, only knowledge of your own body and your track record. If I do resting when tired, and listen to my body, sometimes it comes to me later that maybe that laying down was good for awhile but I need to move around. So I set out doing some laps around the house and if i have that feeling of how good it feels, I know it was the right thing. But then I stop. Breaking it up into small pieces is helpful.only problem is our friends, errands and other obligations Call on us to complete an activity or event. I never count on doing more than one activity a day, but glad if I can do more if optional.
    Pen2 and lior like this.
  5. alkt
    only your own body can tell you when you are over exerting yourself listening to people who do not have your illness giving supposedly well meaning advice is pointless when even medical researches cannot fully understand the processes going on in this disease. I have been ill for over 28 years with m e the medical advice I was given by a supposed m e /cfs doctor was to get a dog and go for more walks .I already had a dog and of course I walked it at least twice a day and for the first horrendous decade I tried to stick to daily routines this was before we had broadband and could discover what a dogs breakfast the medical and political establishments made of this disease. so to get right to the point you and you alone can listen to your body and resting sleeping is a necessity not a crime.
    Pen2, lior and Starsister like this.