NMOSD – Home + 28 days….

Look where I am!!

BUT it’s ok!! I think!!!

Yes back in hospital! Which is all very backward and grim and a bit of a pain in the bum, but those of you who’ve read my last couple of updates will be aware that the last couple of weeks have also not been great.

I’m getting ahead of myself. It’s Wednesday. I’m in the bed opposite the one that I was in last time.

Don’t you love how you realise the thing that you want isn’t always the thing that you actually want? I thought I wanted the window bed, until I realised that the window bed faced a patient and a wall (as opposed to an actual window) – plus the window bed is stinky hot!

More bulleting! Sorry!...

- Listening to Spotify straight to my ears. It’s loud. The curtains are drawn round my cubicle. I’m lip syncing with faces. IF, my legs worked better, I’d be dancing! In the absence of dancing legs, I’m bed dancing!

- Lights are turned out at 8.30 here. I feel like a child!

- Last night I woke up convinced it was morning – really light out. But no, Starship Children’s hospital just has a LOT of lights! It was actually 11.30 which was a little disappointing!

- Back feels like it’s sunburnt, without the joy of the sunshine on my shoulders.

- Louisa has been visiting, bless her. It was supposed to be a fun week of activities and cooking and wotnot. In the end, a lot of anti-flam cooking and a lot of baking, plus some Menendez brothers TV. God it was lovely having her here though.

- Louisa does make remarkably good fudge (thank you Ann for pointing us to Edmonds!)

And aside from the other stuff… NMO wise, as it were… (at this point I’ll also apologise for the inordinate number of ellipses! …and exclamation marks, while we’re at it!

Anyway…

To summarise…. Discharge from hospital 28 days ago, was pants. The neurology team were really lovely, really delightful, but not actually very helpful in terms of transitioning me from newly diagnosed NMO patient in hospital to recovering NMO patient at home and back at work. Mark and I went home, collected vast (I recall characterising as ‘huge’!) cardboard box of dimple pack drugs from the pharmacist, got café lunch and started trying to start getting back to normal. My birthday, including beach, Burgerfuel, presents, fudge, flowers and assorted lovely other things, was delightful, as were the couple of days either side of it. But by the Monday, it was less delightful! The Pain-bombs (see previous posts!) started landing slowly but with increasing persistence, and by the time we’d got to the following weekend, they were rolling in very often every 5 minutes, maybe 60 or 70 of them a day.

By the middle of last week the accompanying violent convulsions and wailing continued to increase, plus we had a lovely Lou now up from Welly and it became clear that a quieter and more sustainable plan might be necessary!

Bottom line, there was no point in being at the hospital on a weekend and no point in being there in a long queue waiting in the waiting room in the middle of the day / evening! So at 4am on Tuesday Morning, Mark and I turned up at the Emergency Department of Auckland hospital on the basis that it seemed to be the only way that we’d be able to talk to a Neurologist and ask them our 436 questions!…

Logic from the Yumster head and also from mine…..

- Pain-bombs CAN’T be a good thing – the body obviously destroying itself

- Pain-bombs and associated numbness in legs?… obviously pain-bombs are also destroying legs and ability to use them

- Walking is pants! And legs more wobbly than when left hospital…

- Pain-bombs also resulting in ‘tonic spasms’ = pins and needles in arms and fingers with arms and legs taking on a complete life of their own as they flail windward … also body must be destroying arms and fingers?!?

ERGO – Lisa and Mark’s logic says…

- Lisa will doubtless be totally incapacitated by Christmas, in wheelchair and unable to do any of the things that Lisa has always done and wants to do!

You’ll take from this that both Lisa and Mark are, in extreme circumstances, prone to catastrophising. Catastrophising not helpful, Lisa! Don’t catastrophise! is regularly advice featured in my resilience groups / seminars!

Ok! ED + about 8 hours ish? Via at least 3 VERY nice nurses and a fabulously wonderful ED doctor…. Mark and I find ourselves back in the CDU (you may recall I’ve been there before!) and one of the very fabulous Neurology dept Neurologists is actually with us and talking to us!....

Lovely neuro doc stabbed me a lot with a large pin, pushed, pulled and whacked arms and legs with large hammer (he will hereafter be known as Maxwell! And yes the hammer was silver!) – but the good bit (! Thank God she’s getting to it!!) was that while he was whacking me, he was also talking.

Most excitingly:

‘I can stop your spasms’.

Actually, no, most excitingly:

‘the pain from the pain-bombs is your body, and your nerve endings rebuilding and healing themselves’.

So…

- The nerves in Lisa’s legs are actually working at getting better

- The nerves in Lisa’s arms, tummy, back and every where else are working to get better

- Lisa’s legs are only wibbly because the pain-bombs are landing!

- There is medication to calm down the pain!!!

- I slept a lot of last night!

We aren’t quite there, but we’re getting there – I think! Meantime….

This afternoon, I’ve done some proper solid work work, which has made me happy, because I understand and enjoy it! While doing said work, I have also been listening to Spotify (as before!) – God I love Spotify. I love that in the last 3 hours, Sarah Johnston has visited me with At Last, Sally & Clare popped in with American Pie, James & Hannah with the Bee Gees, the summer of 85 (best summer ever!) with the Style Council, Julia with the Teskey Brothers, SJ with the Bluebells, Lindisfarne with my first year at Hull, bit of Elvis, bit of Amy, bit of Labi Siffre – places and spaces!

Other observations from today…

hospital foodwise, they asked for my order while I was chatting with Becca and I could only remember Macaroni Cheese and Lasagna so I had an Italian Restaurant menu today, and put on some Billy Joel to celebrate!

OH – and all the other good stuff!!!!!!

- We met the Neuro Physio! Who’s going to help my legs and feet feel temperature, texture, walk normally again etc!! Hoorah!!!!

- We met Fiona – who was, it seems, the missing link when we left hospital last time. She came and introduced herself and apologised for the fact that we fell out of the loop last time! Apparently, she’s the person I call when I want to know if something is normal – which is exactly the person that we were missing all of last week! And the week before!

- AND IF Fiona isn’t available and my GP calls her number while she’s not there, the phone will redirect her to…… the ‘duty neurologist’…. Again – which is exactly the person that we were missing all of last week!

- ALSO have been assured we will be connected with the MS Nurse – by EMAIL!!!

- Oh and Best of all – the neurologist: “I’m Dr Chen, I specialise in MS and NMOSD”… Fiona tells me he’s fab (like waiting for 9 months fab) but has just come back from working in UK and has yet to finish setting up his private practice here – which means…. He has no waiting list yet! ERGO… “please, can you be on my team?”, “yes, but we need to get you well and out of hospital first”.

So yes – in hospital – but both Mark and I sooooooo much happier.

It is 10.02pm which is well after Children’s bedtimes!

Huge snogs from the recovering and healing person in bed 1C of ward 51.

Love you madly!