Diagnosis + 9 weeks….
I kind of thought that recovery would be getting more linear by now, but instead it seems to be one of those roller coasters that pitch you around in the dark. The kind where you don’t know whether to expect ups, downs, backwards, forwards or corkscrews. By Sunday last weekend I had friends round for ‘tea’ (sorry about the colour Caroline!) and everything felt very normal – the pains were minimal and I was nimble as a cat putting on the kettle and fetching cups and refills etc. My guests may not remember it as such, but in comparison to previous weeks, it was so improved and so easy that a full recovery felt bright and close. Things declined on Monday, Tuesday and by Mark’s return from work on Wednesday I was back at the bottom, grizzling, pathetic and in tears!
Confess that I don’t envy Mark at the moment – I’m told that mood swings are one of the side effects of one of the drugs, well lucky, lucky Mark!! Apparently, your body becomes accustomed to the pain-relieving effects of some of the drugs, so that by Wednesday, whilst I was not quite back to 10 on the pain scale – my NMO was pins and needling, cramping and hot pokering me for all it was worth … all day from my fingers right through my lower torso and legs! Not fun!! Anyway! There is a plan with the MS nurse it involves a couple of days resetting, blood tests and then reviewing drug dosage!
In other NMOsd news … yeah, sadly and unexpectedly, I am not off the steroids till March! I actually cried when the MS nurse told me! Water retention on knees and ankles continues! Weight gain, huge dosages of other drugs to counteract the side effects etc…. Not happy! And I feel sooooooo huge! And I have soooooooo few clothes to wear! And if I’m honest it feels like double whammy to first be thrown NMO and then to be told ‘you know that thing you’ve struggled with your whole life? Yeah, the food thing! The weight thing! Yeah, now you’re going to deal with that as well as the NMO stuff too! And at the same time! And no, comfort food is no longer and option!’ And so, no, I can no longer just take a minute to think about getting my head round eating properly and healthily, it kind of has to start right now! And for me and for Mark (poor love is going to look like a whippet!). And I know that however well I eat, it’s probably not going to show, or make any difference for me – but I have to do it anyway or I will just keep inflating like a balloon! Thank God I have a couple of tenty summer dresses ready for wearing in the wardrobe!! But it’s not yet summer!
On the bright side…. I am allowed a little drink! I’m told that I can only have a drink when I’m eating – AND I will be a VERY cheap date!! Funnily enough, in the early stages of this experience, at no point did I fancy a drink. The thought of a bar or a party or a glass of wine was enough to make me start throwing up again… but as things have swung up on the good days, the thought of a glass of wine or a little Pimms (with a little nibble apparently) has become something that I wouldn’t decline! So look out for Large Lisa with Glass of Wine and Bowl of Olives any time round now!! And no, not yet in the Silver Skirt. The Silver Skirt is waiting till I feel a bit less like a lump and until I know I can feel a little bit more like me!
And – re all the above! – YES, I know the most important thing is getting well. I know. I know I should speak kindlier to myself. That will come later, but my head needs to get a bit more around it. Once I have started eating more healthily and once my meds are settled, I’ll be a little calmer. The booze thing – it’s fine. It will be nice to have a little relax at the various Christmas dos etc. And tomorrow, I’ll rise up again, before the next swoop wherever we go!
What’s lovely in this whole thing is that I’m continuing to hear from people I haven’t heard from in ages. And connecting over teas and coffees, which has been really delightful.
Those little resolutions for health and happiness too, are also being kept.
- The cleaners are now well established and they’re very marvellous. They come on time, do the cleaning and disappear all while I’m in another room. It turns out Mark and I are cleaner and tidier than I thought, so either my cleaners need to come less regularly or I need to get better at the list of jobs that need doing. Next visit, I think they may be on blinds and windows! After that I think we may be on hob filters! I think they may leave because they’ll end up doing all the crappy jobs!!
-The other resolution I made, was around painting our hall – and today we have lovely decorator friend coming to check out the hall so that we can pay him to do a job that has sat and stared at us for about 2 years! The theory is that a) he’ll do even a basic job better and quicker than we will and b) it will stop staring at us and Mark will be able to get on with doing all the other jobs that he has to do! I think I made both of those resolutions while I was still in hospital the first time.
Things to note about cleaners… everything is moved. Not far, but just far enough that you know it’s been cleaned!
Things to note about decorators coming in…. it would seem that getting a decorator in means that Mark has now got a huge amount of preparation to do before they start!
Things to note about NMO symptoms keep appearing… Along with those already noted I have a wee tremor / twitch in my hands. Barely there, but typing, particularly on my phone, means that I regularly am tapping or double tapping the wrong answer on the quiz! This is ok when Mark and I are playing together – less ok when we’re competing!
The narcolepsy continues. There’s an immigration webinar which seems to be a trigger, as do some episodes of MASH! This afternoon I did play a reasonably good game of BOGGLE! Although Mark did win – also winning at Gin and Yahtzee!!
Well done New World for the flowers. Pretty eh! And did I tell you about the cup? Well, before Becca left for Europe, she and I went to Paint the Earth and painted each other cups. I painted her cup with my hands in the place that she holds her cup – and she painted my cup with her hands in the position that I hold mine! In fairness she was very bossy about how I painted my hands! But I love that I got to write messages on the bottom of hers and vice versa. Bearing in mind my lack of artistic prowess I’m not sure why this very personal way of painting had not occurred to me before, and my next foray with Boo will almost certainly involve handprints too!
And get my pretend Hydrangeas! Thank you, Lu! They’re 2D card set up in 3D and I still can’t get over how 3D they look! They will sit on my table pretending to be real Hydrangea till the Hydrangea season comes around! And remarkably, I have more joy on the Hydrangea front!
So, for years I’ve had 2 Hydrangeas that I bought myself, planted by the parking pad, PLUS one that Soph bought me that’s over by the fence and can be seen from the kitchen bench. When they were planted, the 2 parking pad plants were blue, the hedge plant was pink. Over the years, the run-off down the hill has meant that every year all 3 plants vary between pink and purple and mauve and blue – and every plant varies even on its own. So the fence plant will have pink and purple and blue and each of the parking pad Hydrangeas will be pink and purple and blue! Remarkably they are all the same colour as we had at our wedding!
There was a Christmas when I asked Mark for a white Hydrangea for Christmas. Mark does not actually like Hydrangeas. When I first met him, he was in the middle of pulling 2 huge Hydrangea plants out of his garden. Imagine his joy when, some years later, a) (with Heidi’s help) I decided to have Hydrangeas all over our wedding and b) I started planting Hydrangeas randomly throughout our new gar.den! Not surprisingly then, my Christmas request was met with a rebuttal!
Becca, however, who always likes to stir things up a bit, decided that she would buy me a white Hydrangea, and it was planted between the 2 Hydrangeas by the parking pad and if we’re honest, several years back, I thought I had killed it. Imagine my delight this morning when I noticed that without any pruning or any care, the white Hydrangea had revived! Come back to life. Buds blooming and ready to bust! And with white Hydrangeas, they don’t change colour with the run-off. So I will have my blues and my pinks and my purples and my whites! How lucky am I?!
It seems that all my news has come down to NMO, being fat, losing weight and Hydrangeas!
Doing OK – ever so slightly P****d off with the uppy down nature of recovery but doing ok. Honestly wishing just a little bit that I could pop back to the UK for a little visit. Would love a proper hand hold/hug with my girl. Would love a little visit to Spain with both my girls – and my boy tbh. Would love a little trip to M&S, Sevenoaks, girly London lunch, girly London time full stop. Loving all the kindness and care that I’m getting over here – but do wish that the London lovelies were just a bit closer. God I’d love a party with all my special people from both hemispheres at it! That’ll be the 60th… when the legs are actually working a bit better.
Time to go – think I’m on Hello Fresh dinner tonight!!
Love you all! Biggest hugs all round. Big snogs xxx
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