Living daily with chronic illness and pain or CFS is really tiring isn’t it?!
Now that might seem like the most obvious statement, but I think that only healthy people would not get what I mean. People with CFS/ME and other illnesses would know exactly what I mean.
It’s mentally draining to continually have to deal with pain and illness day-in, day-out.
Naturally, it’s physically draining too because that’s all part and parcel of chronic illness and pain, but lately I’ve really been feeling “sick and tired of feeling sick and tired” (the name of one of my favourite illness-related books actually).
Having had CFS/ME for 21 years and electrosensitivity pain for 11, I’m quite used to the ups and downs of the chronic illness/pain journey. I know there are times when I’m feeling quite on top of things mentally, and then there are others when I’m just plain sick of the struggle – sick of the fight!
I wrote a bit about that in my post Struggleville: It’s A Tough Old Town but that was more about the overall lifestyle struggle of having illness and pain constantly.
Lately, I think it’s been more like a hangover effect of the really horrid health period I had for most of last year.
Ironically, now I’m finally getting on top of the effects of the stomach parasite and virus combo that floored me last year, but I think I’m just feeling a little battle weary.
As most with chronic illness would relate to, it’s not that I’m back to feeling on top of the world health-wise. I’m just back to my ‘normal’ CFS/ME/Electro Pain self.
I’m very grateful and relieved to back here, but at the same time it’s no picnic either. And I think I’m just mentally a bit spent!
When my alarm goes off in the morning, I usually wake feeling as if someone has hit me with a sledgehammer in my sleep. I don’t feel refreshed. I almost always have a headache. And this does not make for a chirpy little Louise inside my head!
(Now, let me add, a great deal of the sledgehammer feeling is due to my own choices to continue to use the computer and watch TV and talk on the phone etc – all of which give me a severe headache and facial pain within seconds. To read more about this rather ‘strange’ choice I’ve made please refer to my previous blogs: The Dilemma of Pain: An Unusual Choice, Allergic to Electricity: My Story With Electrosensitivity and Trapped In My Body: CFS, Pregnancy & Electrosensitivity.)
But back to that non-chirpy voice. Lately my first thought in the morning has been an expletive of one sort or another. The next thought is something like “Are you kidding me?” or “I’m sick of this” or something similarly enthusiastic.
Now I’m one of the most positive-thinking, optimistic people you’ll ever meet. And I’ve done all the reading on how your words/thoughts create your world. Not only reading either. I’ve experienced the reality of that.
So knowing those negative thoughts are basically my foundation for the rest of the day is not something I delight in the knowledge of.
Yesterday it occurred to me that if I had to live with another person who was as miserable and grumpy in the morning (and often at other points in the day depending on my pain/fatigue levels) as that person in my head, I’d never put up with it.
It’d be either me or them, but one of us would DEFINITELY have to move out!
I know I’d also be pretty blunt with them about their negative attitude because I really don’t like being around negative, pessimistic people. I’d probably say things like – “Just suck it up! This is your life, so make the most of it” or “Who says life was meant to be fair? It’s not. Just get on with it”.
Or actually, I’d probably never say those things to other people. I wouldn’t be that harsh. They’re what I say to myself. Hmmm! There seems to be a pattern here.
So what to do? Cos, for better or for worse, I’m a “DOer”. I notice a problem/something that isn’t working and I want to take action to fix it or have it work. It’s my Type A personality (if you want to over-simplify it!).
I guess, like any problem/addiction, acknowledging it is the first step. So, job done on that one!
Often when I’m having a ‘bad’ day where every thought seems to end up being spun negatively, I just tell myself not to think. A bit like the old adage “if you can’t say something nice, don’t say anything at all”.
So on those days or in those hours, I usually use distraction – reading, listening to audio books or podcasts etc – to get out of my head. These are not the most productive of days, but at least I don’t spend them getting deeper into my own miasma of misery.
But it still leaves me with those few moments/minutes (as long as I can stretch it!) before I get out of bed in the morning.
So this morning I tried something out. The other night when my dear friend Sonia was staying, she showed me a great video clip featuring Barack Obama. It made me smile and got me motivated and inspired. The main theme of it has also become the way we finish any email or phone with each other!
Have a look at it yourself here and let me know if it also inspires and motivates you (regardless of your political views. Not being very strongly political myself – and being an Australian too – I don’t have any issues with Mr Obama. He inspires me usually whenever I’ve seen him):
Now, I misheard Mr Obama, so I thought the chant/slogan was “Fired Up?! Ready To Go?!” so this morning, before I allowed any expletives to come to mind I thought of the story of the lady in Greenwood, South Carolina, and I said to myself: “Fired Up? Ready To Go?”
As I rolled out of bed I chanted it in my head over and over, not letting the other rubbish in. And it worked. I got myself to the shower, deliberately thinking of that chant or just forcing myself not to think at all and just enjoy the water running over me.
Now, I’m not saying that’s going to work tomorrow, but I’ll be giving it a go.Maybe I’ll even try the actual chant of “Fire it up! Ready to go!” 🙂
This living with illness and pain gig that we all share is a day-to-day, sometime minute-to-minute voyage. It’s not always fun. It’s rarely easy. But we DO have choices in the way we approach it.
Who knows if I’ll manage to maintain my chirpy chant in the mornings to come, but by taking it on as a possibility I have another tool in my toolbox.
And this whole journey with CFS and electrosensitivity has seen me accumulate many tools in my toolbox. Like any toolbox, it’s then up to me whether I pull out the tool or I don’t. But I can no longer say I don’t have a tool for that job.
What novel ways have you found to short-circuit the negative thoughts around your illness?
What are YOUR tools and chants and mantras that get YOU through your day?
If you don’t have one, please feel free to borrow mine and Mr Obama’s for as long as you like – either version! Fired Up?! Ready To Go! OR Fire It Up! Ready To Go!
Maybe I’ll change my sign off to that from now on.
Fired Up & Ready To Go 😀
P.S. It’s never too late to join our little troupe of #365Gratefuls #Spoonie adventurers. See this post for more info.Image by Simon Howden via www.freedigitalphotos.com