NMOSD – 4?

At home – day 5

Pills at breakfast 9 – dinner – 2 – Panadols 4 – PRN at bedtime too (bedtime is now – I’m just wearing my eyes out!!)

My flower grove is growing more beautiful and expansive by the day. My Tulips – from last Saturday are getting to the bendy stage – but their red and yellowness is still gorgeous and the bendy just adds to the joy of them. I have stunning Proteoses – which I’m told will live well after they die (and yes, I know that makes no sense at all!!) – a stunning white bouquet arrived from the UK Murrays, which is now occupying the 'East end' of the living room, all of it! And Captain Dog Fruit (and I can’t even remember why that made me laugh so much in 1987 but it made me laugh all over again equally loudly when I read the card this afternoon!!) also landed the most colourful and delightful posy too!

The treats pile is also growing. There’s ¾ of the most stunningly rich and yummy birthday cake in the fridge, along with the remains of a box of petit fours (or petit fives as the Percy parents used to jest!!) – and the amount of chocolate, all the very, very good chocolate, continues to multiply, only to be savagely disparrued within seconds of coming through the door. The fridge looks like Christmas – the breakfast table is groaning under cards and messages. I do feel a bit Pope like. The combination of (I know you googled it) a crappy disease plus a zeroed birthday means that it feels very ‘kiss my ring’ / last respects! In a very lovely way. I have felt very very spoilt to see everyone and to sit gassing and drinking hot chocolate amongst the flowers and the cards.

To update?

Thursday I hit all my markers on the To Do list.

- Hydrangeas were pruned – theoretically, we will have hydrangeas for Christmas!

- Sparkly skirt plus blouse – ordered. Due to arrive Monday

- Temu (!!) bright pink suedette mid height shoes to go with sparkly skirt also ordered!

- Cleaners found and booked for Monday – also v excited about that one!

- Met boss for coffee – cards / flowers etc

- Team for coffees at mine! Lovely to see them – and great Wild Bean hot chocolate!

So Thursday was good!

Friday also good – Leonie @ 1030, Sandra @1230 and Caroline @230. So so good to see and to chat with. Most gorgeous of days!

And then today, I think I hit a bit of speed bump….

I have found myself grumpy. Irritated. A bit pissed off tbh!

Mark and I had a lovely morning – we did the most yummy green veggie breakfast OMG (FIKA’s Recharge Bowl! If you haven’t had it, do!) and then went out to Westhaven and sat in the breeze looking out at the Waitemata harbour. It was a good way to start the weekend – and was followed up with cards, Yahtzee and Boggle – which I think I had a Grand Slam of losses! (maybe that’s why I was grumpy!!)

But at some point during the day, the leg coldness/weirdness, which meant I slept badly last night, so Mark did too, plus the oh so slowness of improvement in the nerve ending shit, just wound me up. My legs don’t feel like mine – I have to lift them into the car sometimes – or help the right leg to cross the left. And there’s been pain today – in the places where my ‘pain bombs’ had previously started and in new places. Not as bad as before, but just bad enough to remind me that they’re there and at any given point they could jump back up the pain scale and leave me literally in tears without so much as a ‘by your leave’. They seem to have had the level for the pain meds right – but I don’t like that the pains increased – and I don’t like that it’s Saturday – and I don’t like that I don’t even know who to talk to about upping the meds – or about why it’s happening.

And I don’t like not knowing when the pains going to go.

To add to my now irritable mood, I started googling NMO Support in Auckland. I discover there are no real specialists on NMO in Auckland…

I discover, the support groups are in Oz or US.

I discover, there is a helpline – but for MS

I discover, some really dodgy wording / possible outcomes that now leaves me wondering:

- Am I going to get my life back ever

- What if I can’t do my job and can’t work any more

- What if financially we’re screwed?

- What if I can never get back to England? (Not that it’s necessary exactly, just that it’s nice to be able to!)

- What if the pain gets worse?

- What if the Drs here don’t know how to fix me!?

Mark if you’re reading this, sorry – just needed to dump and articulate – but fairly sure that you’ve already been down these paths – and I’m sorry for getting there a little late. Anyone else, sorry for taking you down them too.

Let me be clear…. I’m told, take your Steroids etc, things will improve. I have no reason to believe this isn’t the case…

…but the health service seems quite disjointed here, and it’s thrown me a loop not knowing who to talk to to up pain meds – and by extension, who to ask questions of!... They kind of throw you out the hospital, like you’ve got a leg in a splint and there’s nothing more to say… it feels a little underwhelming – I feel underprepared.

Anyway – to finish on a positive note… I think that wearing a pair of loose ¾ length bike shorts, might be helping with some pressure on my legs… cross fingers – I need sleep!

AND apart from breakfast, beach and Yahtzee with Bo tomorrow morning, I also have more visitors tomorrow afternoon – including the Percy / Denby crew coming over from Kohi! They say they will bring treats! I say please don’t!! Eat my cake!

Also – back to work on Monday. From home.

I’ll talk to my boss to figure out what that looks like, but am feeling again, a little freaked out by the fact that I have no idea how that’s going to go! I have found all my sick notes!! Hoorah! I’m told by my very protective husband – and by big brother, that I need to understand just how totally whacked out / starved off energy / resources my body must have been to get to this point – which means, it’s gonna take a jiffy to get back to any kind of normal – but I’m not 100% sure how one works at less than normal! We shall see – will report back Tuesday or Wednesday!

Bottom line, I ain’t good at not having any control – or patience. This bodes badly!

Other questions for Doc – please can I go back onto low dose HRT – the sweatfest is wearing thin!

Oh – and I decided to do something TOTALLy normal this afternoon. I knew it would be an effort but decided that effort must me made…. Percy Maccy Cheese! There are now 3 and a box of cheese sauce in the freezer ready for another day!

And we have Hello Fresh! (Thank you Ann & Steve) from Wednesday! Begs the question how did we spend so much at Countdown! But there’s another story!

Sorry for the ranting ansyness in the middle… I’ll be right in the morning, but sometimes, I do just need to put it in words – just to make it less scary. Or at least helps me figure out just how scared I need to be – and I do feel a bit scared of this.

Confess to only ‘today years old’ in understanding just how smacked between the eyeballs big this is.

Feel it’s going to take a day or two to get some equilibrium – and I will, again be fine. Sorry for the medium size breakdown in the meantime!!!

Happy Saturday.

Love you all big time.

Eyes drooping – nearly bed time. Sleep tight. Lots of love. xxx