Living with ME 2017…..here goes!

I want to start this post with saying a huge thank you to everyone who took the time to comment/text/message/chat to me about my last blog post.  It is still massively weird to be opening up about this side of my life, but, having now spoken to so many people who are living with similar issues, either ME or other invisible illnesses,  I am happy to know my uncomfortableness (is that even a word?!) has been worth it so far!

One of the things the last few weeks has confirmed to me is that I can’t write for jack when I’m not well!  But what I have been able to do is jot down random thoughts which I’ve used to write this post.  And what’s come through the most in those off the wall ramblings is what I actually do on my bad days so that’s what I’m going to focus on in this post.

Not looking my best but proof I made it to the gym!

But let me start with the fact that in amongst a sea of bad days, I also had a good week.  For me a good week is where I got back into my routine; when I make it to the gym three times, fast for two days, take all of my supplements and get back into daily nutribullets (on non-fasting days) and even have a little energy left for the evenings.  That’s the real tell for me, whether I can do anything in the evening when we have no plans, and how early I nod off!  I had been building up to that routine, and I managed to get there in time for the week of my husband’s knee operation. That meant that I was able to do everything I needed to on the day of his op.  To drop him bright and early to the hospital, to get the kids off to school then to stop my needle-phobic husband from running out of the hospital before his op in addition going to Elliza’s come and play session (yep, it had to be on the same day!) and getting everyone home from various places at the end of a long day.  I did have help.  My amazing network of friends stepped in and helped with school pick up, offered parking and well timed cups of tea along with loads of messages of support.  And I must give a special mention to Ali who was luckily working on Greg’s ward and looked out for him while I dealt with the kids.  I did everything I needed to do, and predictably the next day, I started to crash again.

Which brings me neatly back to those bad days.   What I do when I can’t do the things I’d planned to do that day.  When my head’s full of fog, light headed and spinning and every part of me is exhausted. When I find myself feeling like that when I had big plans for nailing a load of work and going to the gym.  Now I have to point out at this point that my decisions based on what I can/can’t do that day are all total guess work…….some days I get them completely wrong.  There is no test I can do that tells me exactly where my limits are so it’s all trial and error.

But back to my bad days, what I’ve learned to do is view my bad days as prep for my good days. I’ve finally learnt to let go of the frustration of suddenly finding myself not able to do…..well, sometimes anything! Now saying that there are things I protect unless I’m really, really ill (like recently when I had gastroenteritis and couldn’t even get out of bed).  Those things are where I’ve committed to do things with/for the kids plus my coaching sessions with my team.  Those responsibilities I don’t give up on unless I have absolutely no choice.  But everything else can and does get delayed until another day. But what I’ve found is that there’s usually a list of things that need doing, you know that list everyone’s got that’s very uninspiring and contains mundane, boring but necessary jobs.  The jobs that on a good day annoy me, I’m aware that they need to be done but just don’t want to do them.  Trouble is I’m aware of them so they end up becoming distracting, and it’s those distractions I aim to clear on a bad day.

Luckily a lot of those jobs require little brain function and quite often not much physical exertion so they’re perfect for a bad day.  Things like getting on top of the endless mountain of washing, sorting out the pile of correspondence that comes in the post, filing receipts (although this sometimes requires more brain function than I can muster), organising the never ending stream of requests, party invites and forms for the kids along with whatever dress up requests we have at the time!  I can also find myself doing a sort out in one of the kids rooms, somehow I always find clothes that no longer fit no matter how often I do this.  They just keep growing!  And if it’s just my brain that isn’t working but I feel able to do a bit more physically, I have even branched into some of those cleaning tasks like cleaning the top of the kitchen cupboards and defrosting the freezer. Again jobs I just wouldn’t do on a good day.  But if all that feels too much.  If the thought of any of those jobs are too daunting or if I start something and realise I can’t even do that then I give up and hit the sofa for the day. Anyone with ME knows just how important it is not to over do it and even I have had to learn just to have the occasional bad day and leave it at that!

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