NMOSD diagnosis + 4 weeks!

Home 2 weeks 1 day!

Update?

Honestly, I have no clue where to start!

Here I sit, Saturday morning, in my breakfast room on what looks like a lovely sunny spring morning. Mark’s at the shops. My Christmas decorations are still up from our pre-Lisa got a really shitty disease, Mid-Winter Christmas. That was on 22 July and it seems forever ago. To be fair I don’t mind the twinkly lights and the baubles still hanging. I figure, the downstairs isn’t decorated, so come ACTUAL Christmas, we’ll ramp that up!

There are 2 returns bags sitting by the door. Post diagnosis I had a little over-reactive shopping spree which has now mostly been delivered and now which a fair amount has to be returned! My Never Fully Dressed Sequinned skirt is here and totally loved, MAX have also delivered some little joys as have TEMU. Happily thought, it turns out that I’m not actually the size of a hippopotamus (hoorah) so that the white tank that I got to go with the sparkly skirt has to go back. And it turns out that internet browsing pink can be about 412 shades – I thought fuchsia would be a nice pop of colour with the twinkly skirt – however on arrival, 1 of the pair of shoes that I bought is virtually neon pink (not good) the other, is somewhere close to orange red on a very precarious kitten heel! On the bright side the phone cover for $5 excellent! As is the rather fabulous $20 black denim skirt! However, Temu!!! OMG – how many emails? how many offers? how many free gifts!!! Anyway the returns are awaiting labels which have to be printed, so next work day is Tuesday – probably posted this time next week!! Oh and I’m still awaiting some white shirts from M&S!!

Currently I’m in PJs. This is not normal attire for a Saturday. Usually, I’d have been at my Activ class followed by coffee catch ups and maybe a stroll, returning home in time for games marathon with Mark. Today instead, I’m ‘seeing what my spasms are doing’! Yesterdays were particularly violent, longer than before and rolling continually from about 11 in the morning. Eventually I ended up sleeping on the sofa. This morning, I’m assessing whether that pattern is continuing or if they’ve calmed down again. I think I may move back to a fudge based diet! Or nothing!

In the meantime, bed has been made up for Lou (thank you Mark), ours is stripped changed and washing is on. With my lovely new cleaners coming on Monday, the rest of the house is staying as it is! So here I am – apparently in full wittery flow!

Actual update!

Yesterday I met the MS Co-ordinator for MS Society. While NMO ISN’T MS, MS Society look after those of us with it! They have support groups, webinars, community nurses etc. And she was lovely, and knew stuff. Main advice was to ‘get on every waiting list’ and ‘get your team together’. She’s told me a couple of other good MS specialist Neurologists to connect with and to ask about Neurological Physiotherapy amongst other things. Third Saturday of the month, there’s a gathering – and whilst I might not go every month, it’s close by, it’s a new group and I’ll certainly check it out!

Also found a good NMO group online. The American ones, I’m not feeling. Generally, they seem to take me to more depressing, more negative spaces – and they talk about soooo many drugs and infusions, which at this stage are not in my orbit, that it’s all a little bit overwhelming and not helpful!

The one I’ve found that I like is an Aussie group. They seem a little more grounded! There seems to be a certain amount of laughing at the absurdity of this ridiculous disease. But they also publish podcasts and updates about evolutions and developments in treatments for NMO with actual specialists / consultants commentating. Couple of people I’ve had proper conversation specifically about the pain bombs, the spasms and the burning – and apparently, it is just part of this delightful disease. Nerve endings in trauma I guess!

And how am I doing? Hmmm… interesting question!

I worked all week! Hoorah! – 3 days from home, 2 days in the office, which I really enjoyed!

The WFH meant I managed to get 3 little walks in. Only baby flat

ones, but including a beach stroll where I bumped into a friend that I never see and it was a really nice surprise to catch up. And the beach always soothes really, doesn’t it. I reckon my legs are moving a smidge better – Mark has not corroborated this opinion for me!

Tuesday I felt almost normal until about 11am when spasms started! I have now issued warnings and apologies to those that I work with, assuring them that when my face contorts and I start spasming/whining, there’s nothing they can do to help – and it will pass. Even still, slightly embarrassing to have to offer pre-meeting spasm warnings! Wednesday was better. One long meeting with only 3 baby pain bombs! And God it was lovely to NOT think about NMO stuff. It was wonderful to focus on ‘job’ stuff. Stuff that I know about and am good at – and have a real, and relevant opinion about!

And then Friday I had Prunes for Breakfast! Who knows if this is why yesterday was so pants and bomby and burny!

And yes, the pain bombs are problematic. I’m having difficulty seeing how these can be woven into normal life. Apart from the pain, it’s not easy having a conversation with someone whilst your body is having a little contortion-fest all its own!

It seems that when something like NMO ‘happens’ you have to make the choice as to whether you ’roll with it’ – or to be rolled over by it.

And I’m on board with that whole, choose how you respond to a situation concept – and it would be fine, if you could, in fact understand what you were rolling with! But for the moment, I seem to be in this state of suspense – of uncertainty, unknowing and completely without control! And that lack of control is not just the situation as a whole – but lack of control over legs, and tummy and spasms and pain – it feels so alien for this body to be so completely not mine!

Anyway – a mixed bag of how I am both mentally and physically I think – and as I process all the information and all the emotions, the roller coaster has rolled, the pendulum has swung – ups and downs, lots of them.

At the age of not quite 60 I thought I knew what the next few years were looking like and I wasn’t unhappy. It’s not like I’ve ever professed to have ‘the best’ life. I don’t Insta the hell out of my Brazilian bum lift or serial holidaying or my puddings / cocktails / influency home décor choices.

But I do like my life. I chose it. I enjoy that I get to spend time with people I like. Love my girls, love my whanau. Love the work I do and the people I do it with. It’s by choice that I spend so many evenings in with Mark – maybe we watch too much tv – but we also play cards and Yahtzee! and laugh a lot. I like that our social calendar is quieter than it used to be and that our weekend mornings aren’t rushed. I’m happy that I’ve chosen to spend a stupid amount of money on café stops for tea, and latterly hot chocolate (!), because it buys me space and quiet and just a smidge of time to watch the world go by. I love that we have our world map on the wall and were starting to plan our ‘trip’. I love my gym crew and my walking catch-ups – and I love our little corner of the bush. I love that it’s so quiet and you can hear the Tuis and the Kereru as you sit on the deck with a bright blue sky and the early Spring sun coming out. I adore the sound of the breeze in the trees and I didn’t mind the idea of another few summers lying on the deck reading a book, with my sasquatch feet Facebooked on the rail inviting abuse.

And so this “oh by the way, your body’s a bit buggered” news, has been something to tussle with.

There’s part of me that absolutely really, believes that my life has been charmed. That I’ve had 60 lovely years. That actually if that all ended right now, I’d still have had dream life, I’d still have been luckier than most. Let’s face it, I could as easily have been given a cancer diagnosis – or a stroke or heart attack. This flippin’ NMO is just my bag.

And when I’m with other people and joking and laughing, it’s easy to remember all the above.

In the middle of a pain bomb, however, or in the immediate aftermath, that’s not where my brain is. My brain cannot conceive of dealing with this ongoing pain. And then I think of all the little parts of my life that have been and are being stolen. Realistically, how and when I’m likely to go the theatre, cinema, ballet or a concert again. Not being in gym classes or having my regular glorious Saturday/Sunday walks and chats. How and when am I ever going to be able to get on a plane again. The travel plans feel tattered. The thought of not ever having another Ladies lunch in London. The thought of never seeing London or Europe again.

And some of this stuff may never become reality but as my toes contort and my sides burn and with no consultant to tell me different or to take away the absolute agony that blows in randomly however many times an hour or a day, it’s hard to conceive that the life I chose is going to remain untouched.

So that’s kind of how I am. Mostly okay. Working VERY hard to focus on the positives and the fact that now is only the start and there is so much more treatment before I know where I’m at – but also intermittently wallowing! Let’s say that. Let’s say what I said in the first video – I’m Okay, but also kind of not okay!

That said – you have all been amazing thank you! Seriously – I have felt so supported by so many people. Sooooo many people – emotionally from thousands of miles away, and physically / practically from the ones nearby.

Latest lovely neighbour…. And little side story. CBD! Ordered last Sunday and delivered on Tuesday – but delivered to the wrong house! When NZ Post had been unable to get a response from the occupants of the house where it was delivered, my next-door neighbour went and got it for me! How lovely!?? That was Thursday. Lou is very amused that her mother is now using ‘pot’! To be fair I’m also quite amused. I haven’t yet ventured down the THC route – it’s supposed to be great for pain, but you also have to be careful about driving with it, so I’m saving it as a ‘just in case’ the other doesn’t work, or needs supplementing!

The first CBD dose was Thursday pm and the late afternoon and night was great. There were a couple of spasms, but they seemed softer. The edge seemed to have been taken off them. Initially, my brain seemed to have shifted into some sort of psychosomatic, omg this is amazing mode!

Friday not so much! Today, doesn’t seem that different. It’s 1040am and there’s a residual burn in my back, which I know will blow eventually. I’m ignoring for as long as possible!

Apparently, the CBD is very effective for pain management and relief and it helps to rewrap the myelin that has been stripped back from the nerve endings. They tell me that I’ll really feel the benefit if I use over a period of 4 weeks consistently. To be honest, I hope I’m feeling some benefits in about 4 minutes! There’s a balm for feet, chest and belly too. I’m wondering what would happen if I just slathered it all over my back and everywhere that hurts? – apart from bankruptcy of course!

Ok! That’s your lot!

Mark has returned from the shops and is hanging washing – at some point I WILL have to move from this chair and it WILL hurt – but before then I might see if Mark’s up for some Yahtzee! (I won! just as an aside!)

Sorry if this one’s a little less up beat. I’ll get there. I’ll keep my chin up and be positive, but we’re in a little bit of a sticky bit just now, and it hurts a bit…. Forgive me the wallowing just for a little.

Big snogs – love ya x