Who’s THAT girl?!

Looks can be deceiving

Who’s THAT girl?! (See cover photo)

Okay, so clearly, she’s me. But I just don’t get it; how could I possibly have been her only a few weeks ago?

She looks so … healthy.

I know, I know – I should know better than to throw out remarks like that. Especially since literally everyone suffering with chronic illness is fully aware that looks can be deceiving.

 We’ve all been there. The well-meaning, ‘you look great!’ comments from people who genuinely want you to feel on the inside the way you look on the outside – but who – through no fault of their own – just don’t see your inner volcano spewing out a relentless cascade of symptoms, coursing through every fibre of your being like lava – wiping out a small village of cute puppies along the way, as you smile politely, thanking them for the compliment.

Fatigue that doesn’t improve with sleep? Check.

Nausea? Check.

Bloating? Check.

Migraine? Check.

Fast heart rate? Check.

Palpitations? Check.

Low blood pressure? Check.

Feel like you’ve either been poisoned or got a really bad hangover, yet your party invite must have got lost in the post? Check.

Need to sit or lie down (before you fall down), so you can do a better job of disguising all of the aforementioned symptoms, plus the many symptoms I haven’t mentioned? Check-ity, check-check-CHECK.

Shop til you drop

This is certainly how I’ve been feeling for the last 4 weeks. Basically, ever since Mother’s Day weekend at the end of March where I had a lovely day with my family, followed by a spectacular day of shopping with my wonderful Mum.

It was spectacular because it’s been 8.5 years since we last spent a day mooching around the shops, looking at pretty things, trying on clothes, stopping for a pub lunch with a large glass of red, before hitting the shops again for Round Two. Fair to say, our fun day out was a long time coming.

It’s the little things healthy people take for granted in life; my Mum and I used to shop all the time before ME/POTS came along. No clothes rail or shelf in any store went un-browsed. We would enjoy every second of admiring every pretty thing, until satisfied that we had finally ‘shopped til we dropped.’

… Until I dropped and never got back up again, that is.

Not that shopping caused my ME and POTS of course. Albeit, I now have a rather entertaining image in my head of being dressed like an A-list Goddess, laden with fuck-tonnes of bags of pretty new clothes, shoes and accessories, as I stagger helplessly towards my sick-bed (covered in the most luxurious Egyptian cotton sheets of course) in which I remained for 3 years with Severe ME/POTS, while some fit bloke fanned me with a giant feather at all times, stopping for nothing – not even a toilet break – lest he disturb my recovery.

(Let the record state that, in this fictional scenario, I definitely looked a LOT hotter than I did in real life!)

But I digress.

A good day

I happen to know that when this picture was taken, this girl not only LOOKED healthy … but she was GENUINELY feeling pretty good that day. Sure, I had my limitations and had to make sure I paced myself – but this was definitely a ‘good day’ for me. The volcano of symptoms was simmering away at a much lower level than they are now. More like a pot of pasta, than a volcano, if you will.

Trail of destruction

Whereas now … I couldn’t feel any more detached from that girl if I tried. The volcano is well and truly spewing aaaaaaall over the place, leaving a trail of destruction in my poor broken body as it repeatedly tries and fails to save itself.

I feel horrific. I just don’t know how the fuck the person I am now is the same person in that picture from only a few weeks ago. Nothing has changed; I haven’t contracted any bug or virus. I haven’t been hit by a bus, overdosed on sleeping pills, partied like a rock star, or all of the above – though lord it feels like it. But this is ME. It really doesn’t take much to piss it off.

I’ve started going back to bed for a couple of hours in the middle of the day most days, to recover from getting the kids to school and doing housework in the mornings. I need the nap to prepare my body for getting through the rest of the day, until evening comes along and I can finally flop back down again once the kids are in bed. I haven’t needed to do this midday napping malarkey because of my ME/POTS in a long time. Not since O was a toddler and I used to put him in ‘baby prison’ (his bedroom with a baby gate in other words) while I went to lie down in the room (or cell, if you will!) next door.

Whoever you are and wherever you’ve gone …

As ever, I’m sure (well, sure-ish) that this is temporary. I’ll bounce back to my version of normal … eventually. Or at least, I hope I will. But in the meantime, it feels SO surreal to look at this photograph, knowing it was only 4 weeks ago.

So I guess what I’m trying to say is: whoever that girl in the picture is, and wherever you’ve gone … please come back soon. Oh, and bring chocolate and wine. And a new pretty outfit. We’ve earned it 😊