Sunday, 30 April 2017

ME Symptoms & Tips: Fatigue - Part 3


PART ONE - PART TWO - PART THREE - PART FOUR

Hello again my lovely loves!


We’ve covered the types of tiredness, and the best ways to get decent rest, so let’s jump right into our next lot of tips for fighting fatigue! 



4. Rests rather than Naps


It can be pretty hard to get through the day without falling asleep sometimes, but, generally speaking, try to rest rather than nap.
Napping can risk messing up your circadian rhythms, especially if it happens after 4pm, and means that it can be even more difficult to sleep at night.

Having regular, good quality rests (as outlined in my previous post) can make all the difference, and allow you to build up energy throughout the day without risking terrible insomnia.

If you nap now and again after a particularly trying day, or a poor night’s sleep, then your body clearly needs it, so it’s nothing to worry about.




Sometimes naps are necessary. That's fine.


If you’re resting correctly and regularly, and you still fall asleep, even on good days, then consider resting more often. Which leads quite nicely into my next point, getting your resting ratio sorted.


5. Resting ratio


Once you've got the quality of your rests sorted, the next thing is sorting out the quantity.
The likelihood is that the amount of rest you need is going to be more than you want to. But, to be fair, having to rest at all is really annoying, so that's probably not a shock.


An NHS specialist nurse once told me that the ideal rest is 10 minutes out of every hour.
I was really upset at this number, because to me it seemed really high at the time, but to be honest, that's actually not very much at all.

I tried this level, and I continued to spiral down, because it just wasn't enough rest for my body. At this point, I was very, very sick, had become completely housebound, and being bed-bound was starting to look more and more likely.


Things got bad

My step-aunt, who has ME, along with three of her kids, told me that what I should really be doing to start with is resting twice the amount of any activity I did.
Only after keeping my energy levels stable for four weeks should I even think of dropping that level down, and, even then, I should only drop down a tiny bit at a time, continuing to hold any changes for four weeks to see if it had any negative effects.


This was shocking to me, and the unfairness of my situation made me angry and heartbroken for at least two weeks, but Ceri and my cousins have recovered to the point where they lead basically normal lives, and I was far more frightened than I was angry, so I tried it.


Best decision I ever made.


A month into my new resting ratio regime my brain fog, pain and nausea started to lessen ever so slightly. Those have continued to drop to the point where they tend to be signals that I've overdone it, or should rest, rather than constant companions.


The fatigue has taken longer (that's always been my worst symptom), but it too has become more manageable over time, and I find myself slowly able to do little things I couldn't again. It's still bad, don't get me wrong, but I feel like a tired version of me now, not like a half-absent ghost human.


I have been so, so careful and have stuck as much as I can to the idea of a resting ratio for the past two years. I've been slow in dropping down my ratio, and didn't drop it all for at least a year, because four weeks wasn't long enough at each stage for my body to take the adjustment, but I've come on leaps and bounds.


My sleep is better, now that I'm balancing activity with rest better, to make sure I'm not overstimulated at night.
I no longer feel constantly wired, and while I still have up and downs and crashes (that's the nature of the illness), I'm much more able to notice when I need to ease off and rest than I was before.
Looking at myself now, and myself two years ago is like looking at a different person. To the outside I'm still pretty bad, but I remember just how bad it got, and this is so much better.






It can be hard to remember to put long term improvement over short term achievement, but I remember how bad I was, and I don't want to feel like that again.


I realise that a resting regime as extreme as this one might not be possible for everyone, but I'd urge sufferers to try, especially if you're house or bed bound.
Even if you're not, having a resting structure has helped me so much that I can't help but think it would be beneficial to so many more sufferers.


I don't know everyone's individual situation, and maybe you have a system already in place, but if you have the opportunity to try it, then I'd really recommend doing so. Try it for a month or two, and see if it helps.

If you don't want to do 2:1 (twice the amount of resting to activity), then start at 1:1, or 0.5:1, although, frankly, the higher the resting levels the better.

If you do go for a higher level, and are able to, try adding some stretches within your abilities to your routine, just to keep your muscles flexible and strong after resting so much.


(If you're at a higher level of functioning and able to work, just try resting an extra five minutes every hour on top of your current system, and do a little meditation track, at work, at home, wherever. See if it improves things.)


Be sensible with it too; stick to it as much as you can, but don't use it as something to beat yourself up with either. 


It's not easy, and frankly makes you want to scream to begin with, but over time it becomes more comfortable until eventually it's a comfort, knowing that you have a system that works. Besides, the easing of symptoms is a powerful motivator, and doing this definitely eased mine.

Remember, that specialist nurse said that ten minutes of rest an hour was what a sufferer should be doing. And for me, that's my ultimate goal. And if you're really struggling with your fatigue... maybe it should be for you too.


6. Regulate your temperature


It might seem really obvious to some sufferers already, but it took me AGES to realise just how much my temperature effects my energy levels. 

If I’m cold, I feel so much more tired, and it takes ages to shake. To be fair, being really hot does the same thing, so winter and summer are always a bit of a battle trying to find that happy medium.

For keeping warm, try heat holder socks, silk skiing socks, and many, many layers. Break out that onesie if you have to.



All of the layers


For keeping cool, invest in a decent, low-noise fan (I saved up for a Dyson one that I can use as a heater in winter as well), lots of damp flannels, and a cooling gel pillow, like Chillow.


7. Grazing


If eating makes you feel tired (a fairly common ME/CFS symptom), then it's worth thinking about changing the way you eat.

Having six small meals instead of three large ones has really helped me battle this, as well as reducing my nausea.
There's less for my body to digest at once so it's not sending all of my energy to my guts, and I keep a steady level of fuel going in most of the time, so it stops me having energy crashes because of low blood sugar.


Keeping healthy snacks around can also be helpful. I like salted almonds: high in protein, and the salt helps balance my blood sugar out quicker than a dose of sugar.


For more information on a healthy ME diet check out my post, Cheese vs Freedom.


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I’ll leave it there today, but check back next week for my last lot of tips. I’ll be talking about finding your baseline, making judgement calls in pacing, and a couple of other things.
See you then!
H

PART ONE - PART TWO - PART THREE - PART FOUR


1 comment:

  1. This has given me a much needed kick up the arse! I've been severe for over 8 years now and been completely useless at pacing. Time I got a grip!!

    ReplyDelete