Hello and welcome to Believe in ME with Rhona Barton. In this week’s episode I’m going to be chatting to you about what a good day looked like for me. This is something I would hope for on a daily basis. I’m sure you can relate to that. So let’s have a look at what that meant for me at various stages of my ME.
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Let’s jump straight in.
As is typical with this condition, it can vary from hour to hour let alone day to day. With this in mind, my good days also varied depending on the stage I was at throughout the almost 10 years I lived with ME.
When I think back to the beginning, those early days meant that I was also spending a lot of my time trying to get to grips with my Labyrinthitis as well as my ME. The constant dizziness and the need to be close to a wall or other solid structure to keep myself upright, was a high priority for me. As my symptoms increased and the ME diagnoses came about, my good days became fewer. The stress of the additional ME symptoms seemed to exacerbate my labyrinthitis and there were days when even moving my head across the pillow, left me reeling with nausea. Yet my head would still spin whether I moved or not and the brain fog descended.
I’ve mentioned before that I lived with Labyrinthitis for about 5 years and the ME then layered itself on top of this. In the first few months of the Labyrinthitis/ME combo, there were very few good days. There were days that felt less bad, less awful, less exhausting but I’m not sure I would have called them good. Certainly not then. When I reflect on how much worse things became for me; I can look back on those early days with a bit of a clearer eye and see that things weren’t as bad as I once thought. After all, there were still days when I could walk to the bathroom and brush my teeth or take a shower. All be it, these were all done in a very wobbly fashion and seemed to take longer and longer as time went by.
For the first few months, when I was still upright and on my feet, a good day for me would include being able to get showered and dressed each day, brush my teeth and watch some TV. I couldn’t have anything too loud or busy on the TV and I struggled to read much more than a couple of paragraphs of a book or magazine if I tried.
By the time I was in my wheelchair, those items were pipedreams! Again, it took a while to get things sorted out. My baseline activities changed quite often. I was up and down in what I could manage, and it certainly wasn’t an easy straight-line trajectory to find my new normal.
I think we sometimes forget that. Finding our baseline of activity doesn’t then mean all things are plain sailing from there on out. Things still fluctuated for me and there was a lot of trial and error in finding out what worked.
Just because you know what you can manage in a day without knocking yourself back doesn’t mean that everything else will neatly fall into place. I highly recommend working out your baseline activity on a regular basis. I don’t mean each week. You have to give yourself a chance to implement your baseline and stick with it for a while to see if it works. I would revisit mine every 6 months or so. More often if my baseline ended up knocking me back.
What I mean by that is that I would work on my baseline activities on say, a Monday and the impact of those wouldn’t hit until the Wednesday. I always had about a 2-day delay. Knowing that meant that I could factor it in to my weekly activities. Only after figuring this out and then trying to find my maximum capacity in a week, could I begin to make small changes to my activity levels. Again, I’d like to stress that just because I had this little bit figured out, doesn’t mean that I suddenly became well and was able to do “normal” things again. I still slipped up. I still had bad days. I added in extra activity and would be knocked back down again because it was just a little too much for me at that point in time. I would reset my baseline and try again!
Part of the additional consideration when I was in my wheelchair, was thinking about the extra energy I would need to push myself about – even if it was just from the bedroom to the kitchen across the hall. Not only that, but I had to think about getting myself into and out of the wheelchair, how I would carry anything and if I would need to make more than 1 trip to get set up for the day. This meant that I had to think about reducing my baseline activity and finding a new “normal” for me. There were days when it felt like I was making no progress at all!
Once I had established my new activity levels, I was again able to put in some careful planning and practice for a few weeks to ensure I had plateaued. By sticking to this new set of things; I was able to add in an extra half hour TV show, or even spend a few minutes with my cross-stitch sewing.
Over the years, there was a juggling act between building my baseline activity to include short trips out, factoring in specific rest time and still planning in some fun things such as reading or spending some time in an online chat room with other ME friends. Social media wasn’t really a thing back when I was ill, so we didn’t have a chance to send a text message or watch an Instagram reel. I had to plan in sitting at the computer (no laptop or tablet!), waiting for the dial up internet (yes, ok, I know, I’m showing my age now!) to connect and get me online, then logging in to the chat service and see who was around. Then there was the chatting time and recognising when I’d have to be winding up any conversation so that I could log out, disconnect from the internet (so we could then have our phoneline back for any calls!) and get myself back to the sofa, my wheelchair or my bed.
As time went on and I moved out of my wheelchair and on to elbow crutches, a good day would include a visit and overnight stay to my Dad & my Other Mother. This meant 2 extra things for consideration. The first plenty of cuddles from the dogs and the second – I could have a go at my own Olympic sport of sorts – stair skiing!
Let me explain. There are 22 stairs in the house and I would climb up them at night usually going up backwards on my bottom, but in the morning, I’d prefer to take the easy sit & slide option. The dogs would love it too as they looked upon it as a game. I would sit on the top step, tuck an elbow crutch under each arm so that they were lifted off the floor, lift my toes towards the ceiling so my heals didn’t hit each step, lean forward slightly and start to slide down the stairs! With enough practice I could even master the return corner towards the bottom without crashing into the wall or ending up in a heap on the floor!
I became more active when I moved to my elbow crutches and thanks to them & the wheelchair, I had some decent upper body strength. I had a party trick for my extra good days, that involved me balancing on my elbow crutches and lifting my legs up so that they were almost 90 degrees parallel to the ground! Quite the show stopper if I do say so myself!
As you’ll have gathered from today’s topic, the more mobile I became, the more I wanted to push myself and add in more activity. Obviously I’ve chatted about the good days and the sort of fun things that I took to doing when I could. That doesn’t mean that this was my life every day. I still have times when I overdid things and I would have to cancel activities, appointments or visits until I was back to my normal baselevel. The good news for me was that, over time, the amount of time I needed to recovery back to my normal, became less.
I was able to watch a film and follow the plot. I could read for longer periods of time. I could write a letter to my penpal in one sitting. I still revisited my baseline activity level and reviewed what I was now capable of doing on a daily basis. It was trial and error but once I started paying attention and listening to what I needed (plus being reminded by my parents when I would get carried away!); I could see some progress.
That brings me to a few points from today that I’d like you to take away from this:
1. I recommend working out your baseline activity if you haven’t already. Ask for some help if you need it but get it down on paper so that you have something to refer to.
2. Keep in mind that once you work it out, that doesn’t mean it won’t change in future. That change may be for the better or the worse but because you’ve written it down, you can compare what you’ve been doing and see if there are any patterns.
3. Please don’t give up. Little things can mean a lot. For me some of that meant being able to brush my teeth every day. That felt like a HUGH achievement when it became part of my normal.
4. Give yourself credit for what you’re able to do now – no matter what that is.
So that’s it for today everybody. I’ve touched on my experiences of what was a good day for me. In doing so, I’ve chatted about what that looked like when I was first ill and how it changed (both good and bad!) as my ME and my energy levels changed. I’ve also spoken about how this fluctuated for me even as I was learning to walk again. This is the nature of this condition.
Thank you for listening. Please review, share and follow Believe in ME with Rhona Barton via Apple podcasts, Spotify or wherever you find your podcasts and remember that you can sign up to my mailing list by visiting my website at www.rhonabarton.co.uk
My Facebook group, Believe in ME Community, can be found by searching for the Believe in ME Community (https://www.facebook.com/groups/716634186122640/about)
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