NMOSD - blog 2

Monday - 9 September

Well the Lisa Percy in the hospital portion of our ‘broadcast’ (!) may be finishing sooner than expected!!…..

My neuro team (laughing that I HAVE my own neuro team!!) in their wisdom, have decreed that the weekend has seen improvement, and I don’t need, at this stage, the Plasma Exchange!! Hoorah! BIGGGGGG hoorah! I am happy to concur with their findings! My nurse for this evening tells me that my notes are showing that I am responding VERY well to the steroids! Hoorah – I’ll take that too!!

Coupled with this…

They’ve decided that if my bladder / bowels can sort themselves, and my legs continue to improve, then I may even be allowed to go home in the next couple days – possibly even in time to have my birthday at home! Party anyone!?

In fairness, I feel like that’s a big IF – but in the meantime, I have decided to do a mini-Steptember challenge by walking the ward in between pee stops. Yesterday I did almost 6000 steps which on a ward this size is actually quite impressive. Today’s step count 4341 – so a little work yet to do – I think I’m going to aim to top 6000.

Maybe tomorrow 7000… maybe!

Since typing the last sentence, I have, actually, spontaneously and without Niagara or Gene Kelly, peed so easily, that I almost had a little accident (sorry if TMO) – but as I sat peeing on that loo in ward 51 I was ecstatically aware that NEVER EVER have I peed with such joy or such a HUGE grin on my face!

More walking later…. Hopefully more peeing later! They have decided to give me overnight without the catheter! Again – ecstatic!! I may even wear PJs to celebrate – or maybe I’ll just pee a bit more!

So to continue the commentary / observations of hospital life?...

As is the way with hospitals, there is a brazen disregard for the role of sleep in the healing process, and, regardless of how little sleep has been experienced, witnessed or reported, it seems that you will be awoken at various hours in the middle of the night just to make sure that you are still alive. I understand the importance of the patients still being alive, but OMG!

Here, I get woken at midnight and 4.

This would be fine, if they just whacked on the finger thing the blood pressure cuff and the thermometer swipe, but no… because it’s the neuro ward, and has stroke patients aplenty, the midnight and 4am obs session is accompanied by a small test to check your mental acuity… even though – a) you’ve just been woken up from the middle of a lovely sleep and b) I'm asleep so my hearing aids are out for the night… LISA, LISA, DO YOU KNOW WHERE YOU ARE?? …. ‘um, sorry, what, I can’t hear you, I haven’t got my hearing aids in, I’m deaf…’ LISA, DO YOU KNOW WHERE YOU ARE?!.. ‘the hospital’ (Mark’s said I should just say… ‘do you not know where we are?’ which might be funny!!) – THEN… AND WHAT YEAR IS IT LISA! PUT YOUR ARMS UP! (where even is up when it’s the middle of the night and you’re asleep!) PUSH DOWN!! LIFT UP YOUR LEG! … which is suffering weakness, currently wrapped in a sheet / blanket that is acting like a pinion so that I couldn’t lift my leg even were my brain in a position to work out where my leg actually is! NOW PULL YOUR HEEL UP TO YOUR BOTTOM LISA!! Etc!

NOTE – the nurses are absolutely lovely, completely delightful and wonderful at their jobs, but at midnight and 4 am there is a certain amount of comedy/irony in the Things to do at 4am list!!!

Last night – I negotiated not to be woken up at midnight or at 4! I promised I’d tell them where we were and what year it was at 6am. This would all have been fine, except that I then spent the next 3 hours NOT going to sleep, because I was convinced I was going to die in the night and no-one was going to notice because I wasn't having my Obs!

I think we must have reached the point in the procedures where my brain has got too much time on its hands, maybe?! And no, I did not get a lovely night sleep, just if you were wondering!!

Current pill tally, including steroids, anti-biotics, tummy soothers, pain bomb avoider, laxatives: 12 this morning – 6 this evening. There may have been afternoon ones too but the pill pots are becoming a bit of blur!

Puncture holes in my skin …. Rough guesstimate? Something in excess of 25 I’d reckon. ‘Sharp Scratch’. I’ve asked them to stop telling me that bit, it just makes the anticipation worse!

Procedures to date: Gastroscopy, CT Scan, MRI, X-Rays, Lumbar Puncture, Enema

Today’s achievements – worn a bra for the first time in 2 weeks! Hoorah! Also – with the catheter gone, knickers are back on the ‘well dressed woman’s wardrobe essentials’ list! And said woman, really must remember to take down said knickers, when going to the loo!!

Also totally unrelated – don’t you love the resonances of past stuff that has nothing to do with anything? So my ward wandering takes me past many other little wards, all with names on the doors (and yes I’m still MRS Percy!!). Well, on one of my doglegs, I pass a door with the name Mrs McLeod… and without exception, every time I pass it, I hear Mark in my head going ‘from the clan McLeod’ in a ridiculous Scottish accent – possibly quoting from Highlander … seg to ‘why does the sun come up in the East? Are the stars merely pin pricks in the curtain of night? Who knows?!’… So yes – little nod to Mrs McLeod every time I walk past.

Also – a poster ‘How to HandRub’ – and I’m back in BGT and Birkenhead College with Jenny Casino (aka D2) singing Born to Hand Jive Baby! … and now, it is ingrained ear worm like and forever in my head!

Steps say currently 6068 – but I may need to have a little wander before bed.

Today’s NMOSD news from South of the bridge, pretty positive I think then?

Plus D1 and I have started planning our Mummy Daughter days when she’s up in a couple weeks – and I have purchased 2 x Anti-inflammatory diet books!

Also – I have discovered that alcohol and steroids don’t mix!! Didn’t know that, glad for the heads up – so it looks like regardless of where I am on Thursday, I will not be drinking Pina Coladas, wine’s, beers or malibu and pineapples!

Thanks for letting me burble. Thanks for giving a shit that I’m ok. Thanks for flowers, soaps, treats, and all the nibbles. Thank you for the visits - and for commenting on my inane and unnecessary posting! (and yes I will be getting the sequinned skirt!)

Huge snogs, love ya madly. Cross fingers for overnight peeing and speedy return to my husband, my bed and not hospital cooking!

Oh – and the lasagna was a one off – pretty much everything else is still dodgy!!

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39Mark Murray, Kay Redmayne-Porter and 37 others