Month: Nov 2019

“Yeah I’m fine.”

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.

My main girl, Poppy

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.

When the mind says “yes” but the body says “no”…

It’s been ages since I’ve written and I guess I just haven’t been feeling all that inspired to write. Having said that, I’ve got lots of ideas following my recent, amazing trip to Bucharest for the MS Sessions (more on that in a blog in the VERY near future).

But today, I want to talk about the mind/body link. Because today, mine are totally not on the same page, and haven’t been for the last month or so.

Some of you reading this will know that Dave and I completed on our first home just over three weeks ago. And it’s amazing. I truly, could not be happier.* But my word, isn’t moving exhausting? There’s been a never ending stream of flat pack, boxes, admin, decorating and just “stuff to do”. Throw a trip to Bucharest in the middle of it all and you end up with one exhausted MSer.

Home 🙂

I try to slow down, but my brain is constantly thinking of the (what seems like) 1,001 things that I need to do. Add to that, I’ve been crazy busy at work this week and I’m just feeling a little overwhelmed. I’m not living in the present – I’m constantly looking at the next task.

Let’s back track a second.

The day after I got back from Bucharest, Dave and I headed out to do a food shop. And for the first time I felt like my disability wasn’t invisible anymore. I was walking along with stiff legs. My knees just wouldn’t bend. My balance was way off. I’d gotten out of bed that morning and had fallen straight back in.

My first thought was “shit, am I having a relapse?” A couple of weeks on and I’m almost certain that I’m not. I’m just bloody exhausted. BUT I WON’T SLOW DOWN!

I’ve got fellow MSers left, right and centre telling me to “slow the hell down” but I’m not doing it.

And now I find myself lying flat on the bed with every bone and muscle in the lower half of my body aching. All comprehension and reasoning in my brain is gone. Ask my a question and I have no idea what the answer is.

It’s my own fault. I insisted on going out and doing a food shop today. I know, I know, but Lidl don’t deliver and they’re WAY more cheaper. By the time I got home I was physically exhausted. My legs hurt, my hips hurt and my feet hurt. I wanted to cry in pain. I did for about five minutes but got in bed with Pops (my dog) and we had a nap.

The second I woke up (feeling much better), I jumped up and I’m doing all sorts of crap that really does not need to be done yet. And now I’m back in bed in pain again. I know. I’m an idiot.

The thing is, sometimes I don’t feel mentally exhausted. I have so much clarity and I feel like I can take on the world. And I’ll just keep on pushing through the pain to get the job done. I need someone to tell me to stop. Which Dave did eventually do today. After I got up and I started trying to unpack the last boxes, he walks in like “what on earth are you doing?!” and promptly tells me to go and put my feet up.

Thing is, when I don’t feel tired, it’s tough to stop me. I physically find it hard to just sit and do nothing. I get restless. I’ll keep on going until the pain cripples me and someone tells me to stop being a hero and sit down.

A friend and fellow MSer, Ilise just sent me this and it is so appropriate.

Really, what I need to do is learn to accept that almost everything really can wait until tomorrow. I don’t have to constantly live “getting shit done” and at 100mph. And let’s face it, the only person beating me up when it’s not getting done, is me.

*That’s a lie. I’d be happier if the used tea bags actually made their way to the bin and if he bought 3ply loo roll and not 2, but I can just about live with it 😂