My lovely Mum and Dad have been up this weekend to see Dave and I in our new home. It’s been a gorgeous weekend and I was devastated to see them go on Monday. I’ve been doing this for ten years nearly and it never gets easier.
The first thing to do on their visit, was to introduce my boxer, Poppy, to mum and dad’s Schnoodle, Reg. We did this by introducing them on the neutral territory of the water park a couple of minutes walk down the road from me. There’s a couple of big reservoirs you can walk round. It’s really lovely and lots of people walk their pooch there.
Anyway, I digress. We took them on a pretty big walk around them (which I rarely do – it tends to be Dave’s job). Mum and Dad both commented how surprised they were at how far I managed to walk. Roughly a mile. I think they were just as surprised when I told them that pretty much every bone and muscle in the lower half of my body was in pain. But there’s nothing you can do. You’ve just got to get on with it.
That’s the thing about invisible illness. The only thing that isn’t invisible sometimes is the brave face you put on. I only ever admit how I’m feeling when someone close to me asks me like they actually want to know. Anyone else will simply get the stock “yeah I’m fine” response.
It’s a difficult balance to strike. You don’t want to go through life being miserable about the pain you’re going through and constantly going on about it. You don’t want to inflict your troubles on everyone else. They’re your problems, not everyone else’s, after all. But you also want people to see and understand that sometimes you need a really simple adjustment to make your life easier. Sometimes that adjustment is as simple as an acknowledgement that you’re finding life a bit hard.
Because it’s a tricky one to get right, many MSers end up on the side of permanently pretending that everything is “just fine” but having this internal struggle and frustration that “nobody gets that things are a bit harder for me”. Then they still won’t speak up and we’re all just too damn proud to ask for help. Or we genuinely believe we don’t need it.
As I’ve already said, as a general rule, Dave does the Poppy walking because I find it so hard. But as he was at work, I really didn’t have much choice on Friday. And let’s just say I’m still paying for it now.
This isn’t a tale of “woe is me”. This is a tale of a girl that was so bloody desperate for the temperature to cool down because she was sweating constantly, she’d forgotten how much pain the cold caused her. It’s a tale of a girl who needs to learn to be a bit more honest when she’s feeling a bit shit.
It’s not unbearable pain – I can keep going through it on the odd occasion there’s no alternative. But it really is enough to get me down. And I’m starting to feel a bit fed up of it all.
But for now, I’m practicing gratitude where I can. It does tend to distract from the pain slightly, as does writing this blog. I’m throwing myself into reading excessively. I’m napping when I need to and generally trying to slow down a little because it’s been a whirlwind six weeks.