NMOSD Diagnosis + 8 weeks

It’s Friday morning and I’m in the ‘Airline Café’.  It’s 7.16, I have a bacon omelette and a pot of tea.  I am wearing a white shirt.  It’s busy for a Friday and it’s warm for this early in the spring/summer, so the back door has been opened too.  The plan today is to get to my desk by about 8.30/9.00, without my bacon omelette on my white shirt and to work till about 3.00 here – and finish anything up at home. 

It’s the first time I’ve been at work since the infamous ‘car park meetings’ which preceded the second hospital admission.   It’s the first time I’ve been to work since having the pain bombs reasonably under medicated control.   I’ve been WFH for the last couple of weeks on short hours following the falling asleep on the keyboard incident.   It’s been doable, but I miss the buzz of the office and I miss seeing my team.  Truth be told, I miss just the ‘normalness’ of getting up in the morning, of going to work with Mark and of doing something I know how to do.  And I miss Mark coming to interrupt me half way through me doing something bloggy!!  Which is what’s now happened.

It's now Saturday.  The middle of Saturday.  It’s been a week since finding some normal.  Last weekend there was a MS Society Social, which happens every 3^rd Saturday of the month – and even though NMO isn’t MS, they let us come play too!  So we went, and drank tea – and they heard my story and I heard theirs – and they all had lives and were in recovery, one of them was going on an Outward Bound course and my drugs were playing and it was lovely meeting new people and being and doing ‘normal’.

Sunday and Monday were also pretty ‘normal’ and we had brunch with Bo and had friends round for coffee.   And then Tuesday was a bit crap and that was when I realised just how bad I am with the drugs roster!!  Theoretically I should have been doing 4/3 per day – but I accidentally went to 4/4 on both Saturday and Sunday but on Monday went to 4/3 (so less benefit on Tuesday when it as pants!!) by Wednesday I was good to go 4/4 but in the meantime Tuesday was PANTS!  And then Wednesday was ok / good and Thursday was good until lunchtime and then mid-afternoon I realised I’d only had 1 of my 4!!  So yes completely PANTS Lisa!!  If you want to feel/do ‘normal’ you have to take your drugs on time!!  And if you don’t it all goes a bit wrong!!

Anyway!  When the drugs are taken most of the day is ok.   There’s wobbly walking and there are still hot pokers but nothing like the pain that was coming in a couple of weeks back.  Lying in bed first thing in the morning there is an assessment of what is working, what is painful, what is burning.  The MS hug is still tight round my tummy but less so.  My legs still have intermittent pins and needles and the feeling of bandages round my knees and ankles.  There’s still cramps and spasms from hip to toe and as well as the back burn.  The assessment is very much around figuring out when the legs are awake enough to make the trip to the bathroom, which to date I’ve got right. 

Let’s face it, I’m not naturally the most graceful or the most elegant of women, but this whole palaver has just added a whole other layer to my already renowned clumsiness.  Every single thing has to be double thunk!! Even emptying the dishwasher requires pre-thinking, planning!  Getting up from any table or out of any car requires about 30-40 seconds in which to lean while waiting for my legs to wake up and prepare to take my weight – which is excessive at present!   Never the smallest of women, the steroids have turned me into food seeking missile, from which nothing in the fridge is safe!  Mark has been warned that the doors may need widening!  It turns out the bandage feeling is probably water retention.  My once, big but relatively shapely legs now have cankles (horror!) and fat knees.  It also means that moon face has arrived.   Plus – additional, weight round my tummy, means I look at least 8 months pregnant!  Not a pretty picture at all!!  Theoretically, once I see the first Neurologist in mid-November, the Steroids and a lot of other drugs will finish, and I will at least be free to work on some of the steroid weight! And I will also be able to drink alcohol – In fairness I will be a very cheap date, but I’ll also care far less about the moon face, fat belly and cankles! 

Oh – and clearly there’s been some damage to the nerves in my hands as well.  There’s a shake and a twitch which means I double click on my phone and the laptop when I don’t mean to! 

Also – I’ve started falling asleep at inconvenient times – like narcolepsy falling asleep!! Usually it’s just while we’re watching tv – or in the car (Mark’s driving) – today I fell asleep while playing Boggle!  I’m not sure if I just got bored of looking for words, but it’s certainly not the move of someone who wants to win!

And the additional joy to the sleep thing?  I’m sleeping well – very well.  Generally, over a certain weight, I snore.  The steroids, plus a fair amount of fudge and other comfort foods, means that I’m now well above this weight!  It is the first time in our marriage that Mark and I have adopted tactical separated sleep arrangements.  I hate it!  Really hate it!  But bearing in mind Marks job, he really does need to sleep – and apparently, once I’m asleep, I’m unwalkable!  I’m told that even if I’ve decamped to the lounge (it seems less permanent than the spare room!) that Mark can still hear me in the living room!

Oh and the Neuro Physio has been!  I have leg exercises to do.  I can do. I am doing. Plus the pricking and the ice and the warm.  AND imagining.  When the ice pack is on my leg, remembering what cold is like on my leg! Etc! Anyway, she’s lovely and will be coming short term till we achieve some goals.  She hasn’t told me what the goals are – but they are likely to revolve around basic every day tasks, I believe…  I will update next time!!

Continuing tales of Lisa’s online shopping adventure….

The Archies have arrived.  They are bigger than intended.  This makes my feet look bigger, if that’s even possible. They may be more comfy, I haven’t yet decided, and the thought of sending them back, means that I’m not sure that my decision will necessarily be a unbiased one! 

The sticky bra hasn’t yet arrived, the other bra that had been bombing my feed has arrived.  It was a BOGOF – but both seem to be undersized, OR the steroid weight is more excessive than even I have described!

A DNA test for My Heritage has arrived.  Fortunately it fits! Haven’t yet done the test or submitted.  Weirdly, when Lou did the same test, it didn’t mention the German or the French that we know is in there, so slightly concerned that they are not quite as accurate as we are led to believe!!

There is also a cardigan thing that keeps threatening to come – but which also keeps telling me it isn’t coming till I finish my order!  I’m not entirely convinced that this is promising – if it comes it maybe worn with my glittery skirt! 

Summer is on it’s way.  Mark’s just mowed the law – it’s on a hill and hard work.  I’ve suggested that we sprinkle meadow flowers on the land and never mow the lawn again.  The difference between us:  Mark does not see this as a solution to the problem = whereas I’m pretty much all in!!  PLUS – my hydrangeas, the pruning of which was one of the jobs that had to be crammed in between hospital visits, are coming into bud, many many buds!  It appears that we will have big bushy bushes in November / December – I suspect I don’t have to even state that this makes me happy!  Sadly the daisies have now gone!  BUT the lemon tree is absolutely dripping with lemons!  I’ve just seen a lemon posset recipe!  Having never seen this before, it’s now something that I need to make and try!  I did make some lemon curd recently – but Lou’s was better than mine – and Mark suggested that I looked like a witch as I stirred my caldron!! 

Current weather:  Cloudy.  No rain.  Lovely breeze through my trees.  They’re all green and dancing.    And there’s a the first blossom on the feijoa tree, meaning there will be at least one fruit.  Mark is happy about this! Me?   Not so much!

More depthy thoughts?

 Well this week I sent off an application for a blue parking badge.  I do NOT like!  I don’t like that I need it sometimes, I don’t like that my legs very often don’t feel like mine – and I don’t like this gradual descent into someone who is seen as less able and less capable and less than I was 2 months ago.  I know that my legs will probably come back – and I know that it’s not anything to be ashamed of, but I’ve spent my life not caring where I park – and this seems like a backward step.  Also – no longer allowed to give blood!  This is somehow ironic given that I had to wait until February 29 this year to be allowed to give blood in NZ.  I had donated however many times in the UK before I left in 2001 -  and just twice in NZ – just twice!   And they keep phoning me to tell me that it’s time for me to donate again!!

Um – ah yes….

I don’t know how to say this without it sounding trite – BUT I had a bit of an epiphany a couple fo weeks back. 

It is not unusual to hear of people who’ve had near death experiences saying that they have a new found appreciation for life.  Well, my diagnosis is not a near death experience BUT it does feel like life is giving me this lesson.  I’ve always been in awe of Michael J Fox’s approach to his early onset Parkinson’s diagnosis and I feel like this feels like that (although, clearly not early onset anything – but I guess I feel there’s still a lot of life to be lived) Yes, I’m grateful for all that I I have and the life that I’ve lived and for the beauty of the world and for the gorgeous place that I live etc – but it feels to me like this lesson: Bottom line, you don’t know what’s round the corner, so live life.  Don’t be afraid of it (don’t do stupid stuff, clearly, daughters!!) – but live it!  Make sure you have the life you want.  Thing is that it’s true not just for me, but for Mark, and the girls and all those close to me. And it’s as true for me, in my slightly fat legs and steroid pregnancy state, as it is for me when my normal comes back to me more regularly.   

And the ‘normal’ thing? Isn’t it amazing how in a VERY short space of time, the ‘normal’ has become so sought after.   So special.  So important.  Right now, ‘normal’ is all I want.  Go to work with Mark, sit in café, do job, sit down, stand up, press lift button once!!  Yesterday I realised how excited I was just to kick the duvet off and to have been able to find the duvet with my legs! 

So I guess I’m saying – notice your normal – and then make it what you want it to be I guess. 

Love ya – hugs x