Too much of a good thing

If you’ve been following my journey, you will know that I’m currently experiencing an improvement in my condition thanks to the ketogenic diet I started earlier this year.

I thought it would be a great opportunity, having just passed international ME Awareness Month, to continue raising awareness and funds for ME research by setting myself a challenge.

Considering that I was almost completely bedridden for quite some time until last month, this is quite a huge deal.

I decided 1000 steps was a good place to start as that was what my fitbit was indicating. I have recently moved to a new home and through the packing and unpacking, I was reunited with my fitbit.

I wore it for a few days and noticed I was nearing 1000 steps a day, somewhere between 700 and 1000. I was so surprised and super pleased with the progress I was clearly making.

I started my challenge on 1 June 2017 and have managed to hit my target almost every day!

The idea is to aim for 1000 steps a day to raise £1000 for ME Research.

By keeping track of my progress with the fitbit and its app on my phone, I have noticed some behaviour patterns are emerging.

This past week I have managed to stay above 1000 steps daily, until yesterday. The problem was, as you can see from the image above, I overdid it on a few occasions and the flare day, yesterday, was inevitable. 

Not only did I sleep until 10am, but I was drained and achy all day. I was weak physically and stayed in bed until well past noon when I got up for lunch.

I then went right back to bed as I just couldn’t function upright. I did try. On the sofa, at the table, reading, art, social media, I just couldn’t.

I ended up flat in bed for a few hours. This recharged me enough to be able to do some painting at my desk in the evening and have dinner at the table.

But another crash came later on, my sister had to help me into bed. It just came like a wave that sucked all the life out of me and even holding my phone and talking was too much. I just needed to lie down for a while, my body was in a serious energy deficit and couldn’t do anything but breathe at that point.

Fortunately this time the episode didn’t last too long and I was later able to get dressed into my pj’s and apply my medication to the rash on my leg, but it wasn’t a good night either…

The thing with this challenge is that I aim for 1000 steps, but some days I go too fast and reach my target earlier in the day.

To a normal, healthy person this might seem like a good thing, but for somebody with ME/CFS, doing too much too soon is never a good thing.

Too much of a good thing can be a very bad thing!

My therapist reminded me of this earlier in the week too. She wants me not to just aim for 1000, but to make that a limit, no more than 1000. This is called pacing. Making sure you stay within your limits, not too much activity and not too little either.

Once you have settled at that limit and can comfortably manage at that level consistently, then it’s time to increment, ever so slightly,  so you don’t cause the crash like I did yesterday.

So now begins the job of finding my limit and sticking to it. It will require coordination in the house, as my sister (who is my carer) will have to take over once I reach my limit and do things for me. Until I learn to spread my steps out more evenly.

I’m like a child who has just learned to walk – I’m all over the place and there’s no stopping me until my body physically stops! This is an unhealthy way to go about it and I could cause a serious relapse.

I must remember my motto from a few months back: don’t do your best, do less.

You can sponsor my efforts to increase activity levels and regain muscle and strength by donating to the Invest in ME Research charity. Visit justgiving.com/chronicallyhopeful to support this worthy cause and cheer me on, every little bit helps and is so very much appreciated!

All donations go directly to the charity safely and securely and you may remain anonymous if you want to.

Thank you for your support!

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