Why I'm Making Videos of My 'Good' and 'Bad' Days With ME/CFS
When I started blogging I wanted to share what it meant (and took!) for me to be happy as I struggled with anxiety and fatigue. At the time, anxiety had been more of an issue for me but recently my fatigue has returned and has become more of an challenge again.
While it’s nowhere as bad as it once was or as bad as others experience, it has become something I’m more aware of on a day-to-day basis again. When I was first affected by ME (myalgic encephalomyelitis), around 10 years ago, I was unable to share my experience with others. Mainly because I didn’t have the energy (at that time, even getting dressed or making it downstairs to my kitchen was a big achievement for the day) but also because I didn’t actually understand what was happening to me.
I still don’t really understand it but one thing that has changed is I can now more clearly recognize the effects it has on me and the differences between me on a normal day and me on a bad day. I know I’m very lucky I can make that distinction now and that for so many others out there a bad day and a normal day are still one and the same.
A few weeks ago it was my friend’s hen party: a day out in town with afternoon tea, a craft workshop and tapas. This was my kind of day and I wanted so much to be part of my friend’s special day. However, my fatigue had other plans – plans mainly involving me in my jammies, fast asleep for the whole day. I remember sitting in my yellow chair that morning just as I was about to get ready and knowing it was a bad one, knowing it was going to be a real struggle and trying to ignore that voice in my head telling me I really wasn’t going to make it. My phone was sitting next to me and I decided to record myself.
I wasn’t sure if I’d share it with anyone but wanted to capture what it was like for me in that moment. The moment when the real me was temporarily gone and the fatigued version of me had appeared. I have to admit, I’m really not at my best in these videos. I don’t mean that I have no make-up, my hair is all over the shop and I am in my jammies. I really don’t care about that stuff. What I mean is that I mess up my sentences, I don’t use the right words at times and I’m not entirely sure I make a lot of sense. I also laugh a little now when I watch my first video from that morning. Who was I kidding that I was going to try and go? It took so much effort to get up those stairs and go for a shower – there was no way I was going out for the day. Ah well, bless me for trying I guess!
So why am I sharing them? Well, along with the first video, filmed tonight to show you some sort of comparison, I thought it would be interesting to see the difference ME can make to me and what it can be like when I have to miss out on things in my life. I notice a few things immediately. My breathing, you can hear me struggle at times, that’s me shallow breathing. I stumble through sentences (it can be hard to focus and think clearly when you are that exhausted), I’m clearly emotional, I speak much slower and you can see in my eyes I’m just running on empty.
There’s a wonderful movement I’ve recently become aware of called #MillionsMissing, named after the 20+ million people around the world (21,000 in Scotland) who are missing from their own lives because of ME. I know I am incredibly lucky compared to many others out there, so I feel if I have the opportunity and energy to speak up, share my own experience and give people even a small insight into this confusing and misunderstood issue when so many others just can’t, then I really should be big and brave and tell my story.
So, here goes, here are my videos, alongside an incredible video from #MillionsMissing which will show you how this affects others. I hope they help you understand a little more. It’s certainly been an interesting exercise for me.
Love, as always, Barnet x
Me on a good day:
Determined to make it to my friend’s hen party:
30 minutes later (not going to make it to the party):
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