NMOSD – 3

Day 2 at home

- Birthday… weirdly – but we’re postponing and will be ongoing till 12 September 2025, it seems only fair!

- Pill count for a Thursday – 9 in the morning. 2 in the afternoon – and a couple of laxy drinks!

- Step count yesterday – only about 3990 – but a proper little walk in the sunshine – tiring though!! - Tuesday step count – (a lot of lying around waiting to be discharged – 2477) – also legs may have been a little buggered from my over enthusiasm on Monday! I have learned that they do not work how they used to and I need to be patient! Anyway

- Steps on pavements very different from ward – lumps and bumps and roots and kerbstones!

Good morning!

It’s a bit grey here in Auckland, and technically, at least, it is my birthday! So I’m celebrating by eating my pills, toast and laxy drink in a twinkly dining room, with all my Christmas lights on! At some level it makes me feel a bit festive.

Mark is away to work – I am again on ‘light duties’ / ‘don’t do any of the chores Lisa’. This is fine! I do however, have a things to do list today, I hope you will approve!

- Prune the Hydrangeas! (also remembering how to prune!) – If I do them today, I should still have them in time for Christmas! BUT, I will have to be careful tiptoeing across the grass to miss the divots and potholes that will inevitably try and fell me!

- Order the sequin skirt and the shirt! I waited till today, then they can properly be my birthday pressie!

- Engage cleaner! I think I have found one! Also a birthday pressie – I was actually fantasising about not cleaning showers as I went to sleep last night! It was very sad, but also quite exciting!

- Meeting boss – suspect talking tactics for return to work next week

- Team visiting! Yay!!

- Possibly BurgerFuel on the beach for dinner IF it’s not raining!

- Any other visits – I’m here!

The NMOSD stuff?

Well the legs feel a bit jelly like. Cold. Tingly. Like I have callipers or slabs of 2x4 strapped to them. They work, but it ain’t pretty! In bed, I can’t really feel where they are! Very very odd.

If you’d told me that one of the first things I’d do at 60 would be to learn to walk again, I would have laughed in your face, but there you have it! Turns out life throws surprises at you and you just get to pick them up and run / walk / shuffle with them as elegantly as possible!

The theory is that if I keep taking the meds, they should come back to some sort of ‘right’ but at the moment, the nerve damage is pretty extensive, and until the steroids have calmed down all the inflammation, I will continue to lummock about wondering where my left knee is at any give time!

And then there’s the tummy stuff. Everything from the bottom of my bra strap downwards, feels tingly too like it’s bruised! And it feels tight! Really tight. Not just bloated, but present, aware, tiggggght!! In my previous life (i.e. up till July!) my tummy had always been soft, droopy (!!) – it was just there! Too much of it usually (!) but always available to just corset / cosset / hide inside tight jeans, yokes and linings. It always kind of went where I put it! NOW, it has kind of declared independence!

And the tightness is round from spine back to spine, belly button back to belly button, from my sternum to my pelvis! Weird as! Initially, I’d assumed it was all bowel / bladder related – and the Doctors had done nothing to suggest differently – NOW (!!) I am told that there is a thing called the MS Hug! And while I don’t have MS, this is the same thing! Nerve damage again, which will remain for a few months. Whilst it’s not comfortable, there’s a part of me that is relieved that it’s called the MS Hug – I mean how bad can a hug be!

Other things? Peeing continues to be my favourite thing to do! But I have now realised that, out of hospital, an ongoing conversations about pee, poo etc is less socially acceptable than in hospital!

My weird belly does mean that I’ve managed to negotiate a return to the dining table for evening meals with Mark. I don’t mind a tv dinner, but at the moment, my tummy doesn’t like, so table dinner

followed by a game of dice or cards is actually a rather nice evolution and I hope it stays!

I will cut this short, as I can’t remember anything else that I’ve noticed in the last couple days, and I’m fairly sure that you’re all very bored with me now. Having returned home, I now feel like I’ve made a hell of a fuss about nothing – and then I look at my pile of pills and feel my very strange legs and remember that it's really NOT nothing

That said, it’s a hell of a lot better than it could be, so I’m going to cling to the fact that I’m here and diagnosed and medicated and loved!

Big hugs – here’s to 60. Love ya!