Nearly Christmas 2024

 

It’s Tuesday 17 December and Mark and I have just ‘broken up’ for the year! (sorry if that alarmed anyone initially~) – currently I am at the kitchen table being blasted by a fan, he is at Mitre 10.  Knowing that he hasn’t done any Christmas shopping alarms me slightly, as there’s every possibility I will get a cordless drill for Christmas!  Hopefully, Hopefully (I say again) he’s taken me at my word and has gone to spec out garden umbrellas.  Our L shaped deck (yes dEck) has 4 umbrellas currently, the sum cost being under $100.  Mark does enjoy finding a bargain on TradeMe and at the moment he’s feeling a bit peeved because the umbrella he’d seen on at a dollar has just increased in price to $1.50.  When I asked him how much a new umbrella was, he didn’t know.  Now fair call, $100 for 4 garden umbrellas is a hell of a bargain, but the pully action on all of them is becoming more and more dodgy with the increasing possibility of my Weeble like self wobbling right off the top of the deck railings! Quite a picture isn’t it!!

I’m kind of reckoning it’s going to be the drill!

Meantime, Ann, you will be thrilled to know that Christmas is as far behind as ever!  Thank God for Midwinter Christmas decorations, and possibly one of the few bonuses of NMO being that I couldn’t really get round to taking them down!!   Lou & H arrive tomorrow afternoon….  I’m toying with the idea of burying the dead wreath and starting again by going to buy some greenery from the florist!!  Either way it’s unlikely to be done before Loobie gets here – neither will the downstairs decorations, nor will the shopping or baking have miraculously turned up in the kitchen.   Their flight doesn’t arrive until 2pm so there’s a window of opportunity in the morning, but I suspect that neither Mark nor I is feeling much like facing the hoards of shoppers in town and it’s quite likely that we will not venture forth until lovely daughter and wife have gone to lunch with slightly less lovely ex husband (sorry ) there was a rhythm to it I couldn’t control!!)

….11.45pm – Percy/Murray Christmas, 20 December 2024…

Christmas has been and gone.  Yesterday was a flurry of activity.  There was shopping and cleaning and cooking and a certain degree of Mark gallantly hung the lights and the baubles in the living room and he baubled up the hall too!!

…sleep prevailed…

….Saturday 21 December, 7.02pm…. still at the kitchen table and fan still on… Gladys Knight on Spotify.  God she’s good!

So between starting this and getting to here?  Well, remarkably, there is a wreath on the door! The Captain has put up lights and baubles in the living room, and mama Christmas has wrapped lots of presents and put them under a Christmas tree that looks remarkably like a Hydrangea!  The weather has brightened up and then thumped down with rain and we have had the first BBQ of the season around a gorgeous table with Lou, H, Mark’s Mum Bo, and Mark and I.  Crackers have been pulled, with fairly impressive jokes (at least for crackers) the usual hats, and a few charades.  We’ve also opened up said presents, which contained far more fudge than sensible and a number of presents that will make it fairly difficult for Boo to get back down to Wellington without getting another checked in bag!

That was all yesterday!  And it was the first ‘Christmas’ that I’ve been a chickling missing.  We have, for years, chosen our own Christmas day, the only criteria being that both daughters were able to be under our roof for the same night.  And so it’s been.  And this year, chickling 2less it has felt quieter and something’s been forgotten.  After everyone else had gone to bed, I had a little chat online with her, but not quite the same.  She’ll be spending Christmas day with the Northern Hemisphere Percy’s and doubtless there will be turkey, stuffing, pud and egg nog a plenty! How strange to not be with all those Percys!

In other news, in the last week it’s become apparent to me that Hydrangeas do not last as long as they should.  We/I wait all year for them, finally they arrive and barely have they popped their blossoms than it is time for them to get freckled and browned and just a little bit sad!!  A similar theme runs on the state of the house…  barely has the cleaner left the driveway than the hoover, washing machine and dryer go back into full time usage and the floor looks just a little (lot) freckled and sad!!

This year, for the first of many, I’ve spent some time actually writing Christmas Cards!  This is a pastime so long forgotten it’s not funny, but here we are!!  In 1973, my Mum would send my sister and I on a carefully prescribed route round our cul-de-sac and the houses nearby, to deliver charity Christmas cards through front doors of all the people in our lives.  Latterly, I think there was a time when we’d be in the passenger seat of Mum’s Chevette directing to the next delivery.  Circle round to 2024…  no-one out of driving distance has been sent a card, sorry!  The rest have been delivered either by me or by me and Boo!! Oh and then there were the desk deliveries!  Truthfully, those who haven’t received, please forgive me, ever so slightly out of practice, and address books just don’t work like they used to!

I have, as usual, pondered on the differences between Kiwi Christmas’s and an English Yuletide. 

1.      I will never get over the sweatiness of a Kiwi Christmas!

2.      …. And the facts that the lights don’t really twinkle until 9pm!

3.      All forms of Christmas chocolate will melt – whether in advent calendar, on tree, gifted or just a casual purchase, it will, without any doubt turn into chocolate icing by 11am.

4.      In summer, Feliz Navidad works much better than Mistletoe and Wine.

5.      Ham, ham, ham all the way – or possibly lamb!  Definitely not Turkey!

6.      And Pav, not Pud!

7.      Trifle remains!

8.      The best part is that this means that there’s a very good excuse for midwinter Christmas in June or July

9.      Christmas trees over here … whole other chapters previously written about, but English ones work better!!

10.  As do cold Carollers, Nativity services and Salvation Army bands in the snow!

Of the NMO?

The short story is that it’s improved. 

The long one is that it’s improved but it’s still going to be a long road back to normal.  The gym is fabulous, but I still struggle with the cankles and the bandage knee thing.  Weight is still rocketing, rings coming off one by one.  Wondering whether it’s possible to grow out of earrings?! 

Much less pain.  Far fewer spasms.  But just enough to make it an exciting gamble every time I get up to standing!  Will I be spasmed or will I not!  When I am, dime to a dozen I will be / am in the middle of crossing a road, and the corset breathing and pins and needles have to just soldier on across the road!!  I do have a droopy left foot which I have multiple exercises to help improve.  My balance is still shot, which I have multiple exercises to help improve. (Guessing this might put a last ditch ski-ing trip in the ‘unlikely’ bucket, but hey!!) I seem to have a permanently snotty nose along with a dirty old man laugh, both very attractive – and for which no exercises have been assigned!

Boobs are enormous! But then they were before! 

I am still a bit pants with the drugs.  But getting better!!

Final word on Christmas…. For those of us born in the UK in the 1960s, The Great Escape will always be a Christmas movie. 

 And so it Goes, and so it Goes….

I was going to do bullet points and can’t remember what they were!!

Mark’s in the Naki this weekend – so let’s start there.

- First time back on the bus yesterday! And the bigness of that is only that I can do driving, but not on the motorway! But here I was getting home from work all on my own!

- Boy in Naki – house quiet – not used to being just me! Stayed up last night watching rubbish tv – but not going to bag it!! It’s not a bad thing!! Although fell asleep on the sofa and bed late for no good reason!

- Messed up my meds early in the week – again had fallen asleep on the sofa (I miss Mark being in bed, what can I tell you!!) any way – missed my last two pills – and I have been waiting for the repercussions which have not yet arrived! I would like to talk to my neurologist about it – but that won’t be till February!......

- Since then – my legs have been Thursday Iffy – Friday and today, good – like on a 1-10 scale where 10 is normal – they’ve been a solid 6 or 7!!

- Is it the gym?

- Is it the missed pills?

- Is it the steroids and other 96 pills doing their thing?

- Gym John is good! He’s been working with my core (which I’d forgotten I had!) and other balance stuff – off the step – pistol squat to a bench – more of the backwards walking, rowing etc…. Mark is bored of the gym programme run down – which is kind of normal!! Had it all before, heard it all before – Lisa still not gym queen!!

- Met two people at the gym this morning who know my wee girl Becs. Not surprising but I liked that she came to the gym with me a bit this morning.

- Office at work currently in the middle of a decorate your work space for Christmas competition. My team doing a gingerbread house – we are next door to Grinchland and, by the window an Elffy space in HR land! - As you walk into the office, it does look a little bit like Christmas threw up everywhere! There are more Christmas trees than at the Christmas tree farm – and I’m fairly sure that by December 18 either one of the trees, or me will be fatally felled by my dodgy balance!!

- Also office news, the bank manager will have noticed that the café is now back as a place that I can get to and get back from. There are a couple of stops on the way as my cramps and burns and pins and needles attack me half was down the hill – but it’s doable. Little bit confused by the drop foot to be fair – and now I also get burns across my back dimples!

- Currently 5.17pm on Saturday – peeing down with rain, Christmas lights on in kitchen, where I’m sitting! Hydrangeas are enjoying the rain! Sadly, the wreath on the door is not getting the benefit!

- Wreath on the door, I hear you cry!! Isn’t that a little early Lisa? Well yes!! There was a wreath making class. I went with a friend, hers was stunning and In fairness she should be running a wreath making business. Mine is fine – the florist said that she liked ‘simple' and I'm not sure quite what to take from that! She also said that all the foliage would either dry well or would be fine till Christmas if we watered the oasis. It turns out that watering a hanging up oasis is harder than you’d think – and actually my oak is not going to last till Christmas!!

- That said – Wreath is on the door!! I’m fairly sure that at some point I will report that wreath has fallen off the door!! A bit like the falling over tree!! I think that next year I will spend the wreath making class money on buying a wreath – maybe my friend will make me one!!!

- Haven’t showered yet after Gym. Have barely got our of car, truth be told. I really would like to just not work and live in a world where I could go really slow and listen to music all day!

- New girl starting work on Monday – Welcome for her Monday morning. Brownie baked, Flapjack baking! At some point I will venture out to the lemon tree and then make 2 lemon cakes! One of which will please Mark’s Mum in the morning and one which will also come to work as welcome Kai for my new lass!

- It is very wet. The trip to the lemon trees is not looking very pleasant!

- Billy Joel currently doing his thing – took Becs to see him end of 2022 – turned out she only knew the tracks on one Greatest Hits album (I’m guessing it was two volume and she only had one!) anyway! … she didn’t know Italian Restaurant. However she knows every word to We Didn’t Start the Fire – and Vienna (not the Midge Ure version) is her theme song – and if it’s not it should be!

- Flapjack alarm just went off – flapjack oven too cool – flapjack looking like a swimming pool of I’m not actually sure what. Regardless it’s in for at least another 25 mins!

- Loobs has been doing Christmas shopping and was surprised when I sent her a bunch of internet links. these are the links whichi I have restrained myself from using. After Christmas I will be able to clean in nooks and crannies never imagined. I will have unpillied jumpers and will be very excited with roll up camping lights!

- Some of you may remember that I got a little over excited internet shopping during my hospital stay. E.g. at present I have 3 bags of returns and only one is from a reputable source (M&S)(And why on earth would you buy a shirt with poofy sleeves at the moment, Percy!? NOTHING needs looking big right now! Not even the space around your elbow / shoulder etc!! NOTHING!! )

- SHEIN – Yeah – you kind of get what you pay for. If you spend $100 on 6 dresses – you are going to send at least 4 of them back – and you’ll keep the other 2 out of desperation!

- Invisibra thing…. Initially I bought 1 sticky bra. They charged me and sent me 3 – it’s been very very complicated sending them back to NYC. As such I have 3 sticky bras that are unlikely to fit for at least a year! They sent me a replacement for the original actual one I wanted… It is a size I have not worn since breast feeding my daughters and still it is somehow too small! I’m now horrified. My current bras cannot continue much longer – towards the end of each work day it’s doubtful whether breath or life will continue! - Probably should get new undies too. BUT I resent buying things that I don’t want to buy. And that predictably I will either grow out of as the Steroids continue to expand my girth – OR I have stabilised / I eventually get a hold of things and I start getting smaller!! (oh for the day!)

- Peonies still gorgeous!

- Flapjacks are now to be sticky overcooked flapjacks! Feel free to rename!

- And Ann – you will love that I have done some Christmas shopping today!! Be impressed at organised Percy!!

And finally. So this morning I journalled with a pen and paper. For those of you who want more of my drivel and who have the patience to decipher my handwriting - or who know my writing of old, this was my laptopless journalling.

Here’s the thing – I’m ok. The ups and downs are shocking. The ups are so relentlessly unreliable that I barely have a chance to enjoy them before swooping into the next downer! I’m really aware of the importance of all the drugs. And despite being crap at them, I’m getting better (!) and I will do exactly what the doctors tell me to until such time as I finally get to meet my neurologist and ask the 4 million questions.

I know it’s early. I know it will get better. But this was me armed with a pen on my ownsome - without my laptop after every one had left.

It’s kind of wondering and wishings.

Have to say I realllllly do want a round of Christmas chilly drinks. I’m not used to being quite so sober for quite so long!! I miss being with people I feel comfortable enough with to just sit and drink wine!

I think it’s now 13 weeks (3 months) since diagnosis and life in some parts is getting more normal. I’m having this whole unsupervised weekend! I can bake, and gym and walk and stuff!

Anyway – prize for anyone who can read the parts of my writing that I can’t!!!!

Love you bit time. Huge hugs. May your Saturday be sunnier, but as nice as mine has actually been.

Big snogs xx

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Hydrangeas.

 Hydrangeas.

You may have noticed that I’ve not titled this post after my NMO diagnosis. 11 weeks ago if you’re interested – but I figure, it now just is!

Things to comment on currently:

Hydrangeas!

It’s already that time of year and my hydrangeas are starting to pop. Fairly sure I have ‘banged’ on about this before – but having managed to prune my hydrangeas between hospital visits, I’m so excited for them to be blossoming in such numbers. All three bushes and the white one (yes I’ve definitely banged on previously!) are absolutely spewing forth. As is the bush next to the dairy that I regularly nip in to ask if I can steal some of their flowers… and they let me!

This means one of several things:

- Spring is definitely here.

- Christmas is oh so very round the corner.

- All our fans are in the basement, which is completely the wrong part of the house!

- And I don’t have enough summer tents to wear!

- Plus Mark is going to hate me when I ask him to Christmas decs – but it’s either that, or me on a ladder, and I can’t see that being allowed!

Amazing that all these things are related to hydrangeas. Pictures will be posted imminently!!

Gym!!

There was a moment when I wasn’t sure I was ever going to get back to the gym. My membership is still on pause at my usual gym BUT Becs has pointed in me in the direction of a local gym where the owner deals with, amongst other things, rehabilitation and functional fitness. So it is that three times this week I have donned my trainers and my oh so tight sports bra and done 3 sets of 15 on leg presses and rowers, face pulls and wall push ups. I had forgotten how much I enjoyed getting my body to move. And it was the first time since July that my legs felt like my own legs. The joy of moving and pushing and of feeling totally safe – nowhere to fall, nothing to walk into – it was fabulous! I’m not fixed yet, but it will help. I’ve barely moved in 10 weeks and to move was just glorious!

Balance is still all over the place. Veering right with alarming consistency and had thought it was me favouring the right with my right foot – but on closer inspection, it appears that my right is just correcting the left foot doing the over righting! Either way there are exercises to do both in the gym and at home!

Alcohol

Mmmm – consumed for the first time since July 25th. Work Christmas party was on Friday. We partied on a boat in the Waitematā harbour and the expectation was for a sunny day with dancing, drink and lunch. In the event, it absolutely, chucked it down with rain and the sunshiny dancing ended up being inside and shuffly on carpet! There was some debate as to whether I should attend. My team at work said yes – and just stay sat down. Mark said no, you’ll fall down and be out at sea. Soph said, go but don’t drink. I defied the advice of Mark and Soph, who should know me better than to tell me not to do something!! I went, I drank, I stood up a little bit and survived unscathed.

Whilst on steroids, alcohol is now to be consumed only with food, only in limited quantities and only in safe spaces, cause I’m probably going to get drunk really quick!!

It also turns out that it messes with what my meds do, at some level too – and it messes with how I feel about that as well!! I will be doing some further tests, but for now, drinking is off the agenda… maybe… I haven’t tried Pimms yet!

Steroids

No one warned me quite how long or quite how brutal steroids were going to be! This morning at an MS social I was told by more than one person that steroids really f*ck you up, but it’s temporary.

So that would be useful information!

I’m now given to understand that they are the thing that mucks about with your brain, your sleep and the roller coaster of emotions too! That would allllll have been good information before going on them!

Someone should also have said, very early in the piece – “you’re going to put on a sh*t ton of weight REALLLLY quickly – so maybe stop eating the fudge!” – OMG – I literally cannot buy clothes fast enough! Never have I felt so fat – never have I been so fat! – never have I felt so unattractive in my whole life. I know it’s temporary but just OMG!

Also interesting to know the different cultural responses to such speedy and prolific weight gain! So many lovely friends and family have told me how lovely I’m looking. My general response has been, I’m not but thank you. However, a girl who I work with regularly and who I adore, just asked me what drugs I was on because I’d put on so much weight and my face was so fat! If I’d have been drinking tea, I’d have spat it out!

Summer

It’s going to be hot – and I’m not quite sure how to navigate that. My hair is going to be a shocker. I’m going to sweat horrifically. I’m not entirely looking forward to it! Maybe my nook will continue to have dappled shade and I will manage to find my only little piece of heaven!

Family

Mark’s brother is over – they are going to cut back some of the trees, while he’s here. Mark will not see 63 if my dappled shade is hacked back.

My hair

I’m not sure what to do with it. Here’s the thing – however much money I spend on it, it’s going to be hot and floofy and sweaty and not my best look. I think I’m going to have to let it slide for a little while and maybe not see hairdresser again till the heat and humidity and steroids have calmed down a smidge.

All the above

A lot of which was actually steroids?... so it turns out that most of life at the moment revolves around how I feel about NMO and it’s effects – even when I pretend it doesn’t!

It doesn’t matter what anyone says, it’s probably going to be a year before I look in the mirror and feel like me again. Thank you to those of you who are doing your best to boost me – I do really appreciate it.

All that aside, I’m still here, I’m being treated and I should probably stop whinging. Then again, it turns out it’s a bit of a bitch of a disease. In the week after the doctors told Mark and I my diagnosis, several of them said to me on more than one occasion that they were very impressed by how well I was dealing with the fact that I had a ‘life changing illness’. To be fair, if I’d known anything about the following 10 weeks, if I’d even heard of NMO or if they’d have told me anything about what to expect, I might have dealt with it less impressively!

Other things

- you know, as well, I struggle with the fact that I still think I’m in my 30s! And now I’m moving more like a 70 year old!

- Oh – on the roller coaster? I’d got to day 12 on the nearly normal front, but then it went to custard on day 13 which was Friday.

- Maybe tomorrow will be back to day 1 again

- Still the inventory is taken before getting out of bed every morning to assess whether it’s starting off good day or a bad day.

- Still the assessment of good or bad day can be so easily turned over by the arrival or a lovely friend or a gorgeous message or, it turns out, an MS Social – who’d have guessed?

I’ve started to prattle! (STARTED to, they all cried in unison!!!)

Whatever, that’s usually a sign to pack up. I hope you got some of ‘the latest’ amongst the rubbish.

Biggest hugs – lots of love always – big snoggs xx

PS - and yes I know it's a big glass!!

NMOSD – diagnosis + 10 weeks

 NMOSD – diagnosis + 10 weeks

Well Crikey! Today is Sunday. Mark is cooking steak in the kitchen. I’m at the dining/breakfast room (constant source of conflict!) table. I’ve just cleaned up the kitchen wet bits and put out all the recycling – and I’ve just hung the washing downstairs. All the things I’d have done 15 weeks ago…

(We have now eaten dinner!)

So it’s now later and Mark is downstairs fiddling with his ‘dreamteam’ – I’m still at the table. The French doors are open and the birdsong is loud enough to drown out the dishwasher! Almost! My point above was that things are getting a bit more back to some kind of normal.

Before getting out of bed my day still starts with a mental check, an itinerary of all the bits that hurt, or hopefully don’t. At the moment, it seems to be mostly limited to waking up with a ‘burning’ back. It feels like a bad case of sunburn, but it’s manageable – even getting to the point of pleasurable in that it reminds me of holidays and sunburns long past. That said, I’m lying on my back and I know that the turn and move to sitting up before going to the bathroom will bring on the MS hug. Again, not unmanageable – but this one, not pleasant. It feels like there’s a very solid baby hanging around with a very tight corset on, that seems to move every day – and then on top of that there’s a really attractive layer of fat. Said baby, is still getting in the way of everything, including physio exercises! and also has the audacity to be uncomfortable / a bit painful! Thighs, shins, calves, feet – still feel weird! Something between tingling, pins and needles and almost numbness. And change from day to day. The move from the bed to the bathroom is probably the wibbliest part of the day, but gives me a clue as to what the rest of the day might look like! And I know that throughout the day I will get burns through my thighs and hips and all sorts of other places at the moment that I'm least expecting it!

The last 7 days have been good days. Days on which the swing is upward! There are still pins and needles in my hand, there are times when my legs really don’t want to do as directed! But, in general, 7 good days in a row. 7 days which, on the whole, have been doable. 3 of them have been in the office and the other 2 have been wfh – including my first day working from a café! This week has also included a café lunch with a gorgeous friend, evening tea date with another lovely friend and afternoon drinks (I was on tea!) date with neighbours. Yesterday I also walked back from Highbury to our place, which is 3.2K – and although there were times when I still got the finger tingles > tummy cramps > pins and needles/cramps/loss of use of my legs etc – mostly, my legs behaved and it was nice getting a proper stretch, albeit short! In fairness, there was still a lot of weaving left and right – and were it not for some righteous righting of the course, there were many times when I was heading straight for the road!

So, by and large a good week – Saturday, I even felt that I had sorted out every personal insecurity I had ever had and was secure in the knowledge of who I was, where I was in life and what I was doing. Twelve hours later sure enough, I was as insecure and confused in all those things as I ever have been before and lucky (again I say, lucky) Mark gets to deal with me. Apparently, mood swings are side effects of one of the drugs, but OMG, I swear I’ve never ever been quite so tortuously overwhelmed in such a short space of time!! Other side effects – the narcolepsy is still here!! As long as I’m upright or speaking with someone, it seems to remain at bay, but tv, computer screen, meeting or theatre it seems my eyes only have to stay focused in the same direction for about 5 minutes and my head is nodding, eyes are lolling / closed and the drooling has begun!

Mixed bag then!! Definitely getting there. Definitely less pain. Definitely more like normal.

Oh and yes – guess what the weight gain is minimalised if I eat less!! Now there’s a thing!!

So that was the NMO update…

Following on from that, some Lisa wisdom...

Have you noticed how over the years and particularly recently, nostalgia and looking backward, seems to have been given a really bad rap. It seems to be minimised? Trivialised? But my Friday morning epiphany, reminded me that as long as it's the good stuff that you’re dwelling on, this is the stuff that has made your life beautiful, and that nostalgia and a backward glance can be a really good thing.

Friday morning, I went for a little walk (2.6k), talked to a man about how we're going to get my legs working properly again, and then I sat and drank tea in the sunshine - all good positive things in the present. While I sat there, 2 little girls ran past in pink sparkly tutus and I noticed how much I’d enjoyed and how much I miss being the mum of small children. I remember the tutu age. With hair done up like sprigs of broccoli! (God knows how the mother had them out the house at 7am) but it just set me thinking to all those lovely times when my kids ran round the house in sparkly tutus and broccoli hair while I made Weetbix for breakfast - and they squealed. In fairness, Lou never had Broccoli hair and was more inclined to Mermaidom than tutus but it was a beautiful taking the moment to look backward, while my little ballerina/fairy and my mermaid are so far away!

Thing is that yes, what doesn’t kill us makes us stronger, but fairy costumes and broccoli hair, picnics by the beach and squealing, and friendships forged in the midst of too much alcohol and bad behaviour are all the things that made us who we are and the things that sustain us and make us laugh even on the crappy days. So that was my epiphany and my little piece of wisdom in the middle of my shitty stuff! Remember to look backwards!! Draw some joy and some strength from the fabulous bits in the past!

Day 8 underway already! At work, or rather, at café! Hoping jelly brain will start to work like my old brain again soon! Sure my boss does too!

May your Monday be wonderful! Huge hugs and big snogs.

xx