Day 8 at home... Blister pack 2!! More about the NMOSD experience!
I’m figuring that if it’s worth me doing this at all, I need to be honest, good days, bad days. I’m assuming you’re all ok with that.
I started this yesterday – Tuesday 17…..
Thrillingly (!) (and I promise to move on from bowels after this!) my bowels are now needing a little less encouragement and the laxative intake has been reduced by about half!
Peeing is still very exciting! Very! Slightly worryingly so, in fact! But you take your kicks where you can find them!
Flowers are still filling the house with colour and beautiful smells, although my tulips have finally gone over this morning.
The weather’s taken a turn. Amongst the budding greenery the spring showers have been thumping downpours, and the temperatures have dropped in the evenings… generally, if I’m tucked up inside, I wouldn’t notice or care, but the leg thing means that the colder it is, the stranger and more alien (and frozen) my legs feel. The less like my own. Last night I slept in PJ bottoms, over a pair of ¾ length leggings and a pair of hold up stockings! My knees, calves, ankles and feet, still felt very much like someone was bathing them in ice! Roll on summer!
Also on the thermostat front, my now, unofficial NMO guru (UNMOG)(Lily who used to be in Lou’s class at Green St Green and whose PhD was on MS (and similar)) – reckons I should be good with low dose HRT, so the GP and I will be chatting tomorrow!!
There are about 36 other questions that I have to round off with GP, many of which relate to how the health system works here. Having lived here 23 years, you’d think I’d have a clue, but apart from netball injuries (children’s not mine!) we’re strangely out of the loop. Apparently, because we’re on the North Shore, we should go to North Shore hospital (if necessary) even though the neuro ward and neuro doctors are in the city, so I’d be shipped there anyway! Apparently my consultant will also be based on North Shore – even though, from what I can tell, he doesn’t seem to have any particular specialty in the MS / NMO space… From what I understand I am patient number 5 with NMO in NZ. I’m not entirely thrilled by this. I’d have preferred to be patient 405 or 505. It would be nice to feel a little less like a guinea pig, to be honest. (Any NZ neuro’s reading this – apologies – not personal, not suggesting for a minute that you aren’t across everything – but wouldn’t you prefer to be number 405 rather than number 5?)
That said – the number 5 information is WOM, so we’ll see!
GP will also be answering questions on pain! My pain bombs have evolved! Most of the time, I can find a position and get comfortable – but moving to a new position involves what feels like burning the skin off my back! It’s a delight! Pressure helps – but I’m getting to the point where I don’t have enough pressure in my hand / body to counteract the burning – so I’m guessing there will be more – or bigger – pills involved for a while!
Also signed up for ‘Newly Diagnosed Programme’ on MS site. Although it’s not MS, apparently, NMO is included in their programme and they keep an eye on you for a couple of years! No idea what that looks like yet – but figuring they’ll have a better idea of this stuff than I do.
Back to work yesterday. All was going well till I realised I’d been sitting in the same position with my shoulders / arms too high for too long… by midday, searing pain across my back and my bra was jettisoned for the remainder of the work day. Not entirely sure how that would have played out in the middle of my actual proper office – lives could have been lost! Other than that, working was ok. It was actually really nice to think of something that had nothing to do with NMO, legs and tummy or anything else ‘sick’ related! Hopefully today I’ll get through some stuff and feel productive!
Little wins?
- last night (Monday) I slept without a sleeping pill for the first time since being in hospital. Until this little episode I’d NEVER needed / wanted / had any help with sleep, so getting back to that last night was good
- I did wake up for wee (hoorah!!) at about 1am and tagged in with D2, in France on bike with French bread – Ohhhhhhhh I miss French Bread!! I miss D2 of course too, but at 1am, I did get a little over excited about the bread!!
- The ¾ length pants are helping with the legs / sleep a little bit. It seems like a little bit of pressure (not much) damps down the tingling.
- Cleaners came yesterday. I am a fan of the cleaners. I feel that I should have met them and hired them years ago. It was totally joyful to emerge from my ‘office’ for the morning to find my house sparkling, without having had to lift finger, hoover or toilet cleaner! They are coming back in two weeks, and between now and then I will have to become a much cleaner person so’s not to spoil their good work prematurely!
- The sparkly skirt is here!
It’s now Wednesday. I’ve been home a week. I’m onto the second bubble pack of pills. Paranoia means I’ve just double checked that I have actually started Week 2 and not Week 4!!
The weeks been ok. There’s been plenty to distract me. So many lovely drop ins from friends and family. So many gifts of food and flowers and fudge! So many lovely long coffee chats. In normal circumstances it would have been a really delightful week. In normal circumstances, I’d have considered these holiday days!
In light of the abnormal circumstances, I’ve tried to adapt. Always having been something of a night owl, I’ve found myself purposefully going to bed at 9.30. It’s not even a choice. My eyes ache for sleep – and so I have embraced Mark’s early to bed mantra. He brings me tea at 6am and I doze till it’s cold as ice!
Food wise, weirdly – and do we actually believe it – the neuro team at the hospital told me that there’s no recommended diet for someone with NMO. I’d assumed that bearing in mind my completely inflamed spinal/neural lesions, an anti inflammatory input / diet would be a good thing…. Apparently not. I’m assured that tests / studies have shown no discernible difference in outcomes. To be fair, whilst not entirely convinced by this, neither am I unhappy. I was checking out the Autoimmune Protocol diet – which seems to be Paleo, literally on steroids! But with an elimination phase followed by a reintroduction phase. The elimination phase seems to eliminate pretty much all joy – dairy – (including eggs) nuts, seeds, nightshade vegetables, oils, sugars, alcohol… It does include bone broth……
Anyway – for now, it’s good knowing it’s there, but, if I’m being entirely, 100% honest, I feel like I have had enough joy ripped out of my life in the last 3 weeks – and I’m not sure I’m ready to cede the last vestiges of anything that might make it worth actually waking up and taking the meds!!!! (melodramatic! But you get what I mean!)
Yesterday was hard. Last night was hard. From the twangs this morning, I fear today is also going to be hard. The pain bombs have returned with alarming regularity and intensity.
While I was in North Shore and when I was very first diagnosed I was getting these random VERY VERY pin pointed pain attacks. They’d start, for no good reason at a point where there had been a break in the skin, like somewhere a blood test had been taken or where a drip had been attached. Initially, a tiny pin prick feeling, then increasing in intensity and spreading with speed and depth through the whole, for instance hand, up the arm – and then totally without reason, to my left knee or lumbar area. They last only about 30 seconds (and I’m getting better at remembering that) but for that 30 seconds it is the most intense and spiteful pain I have ever experienced. The doctors at NSH gave me medication – and then I moved to AKL hospital, and the pain bombs lessened and went away – leaving only the vestige of a threat where I could still feel the break in the skin waiting to erupt.
5 days later – no pain bombs, sent home.
As an observation, North Shore was a colder hospital than Auckland. North Shore I had a blanket and a duvet from home. Auckland warmer – had a fan to neutralise my HRT thermostat stupidness!....
Initially, home, was normal, and pain bombless…. but then we’ve had a little cold snap for the last 2 days. Only 8 degrees – and the pain bombs have started again. And I don’t know whether that has to do with the weather? Or whether it has to do with the meds not working? Or both. And it's alarming if it's the meds not working. Why have they stopped working?
Either way, it means that I’m fine till I move – but if I move, to whatever position, I’m having to factor in a 30-60 second pain bomb.
Today, there are 3 of them encircling my gut. It’s already tight with my MS hug – but now there are 3 burning pokers on cold skin to get past before opening the door, peeing, making a cup of tea or doing pretty much anything else.
I’m hoping to God that GP can a) up my meds b) refer to cannabis doctor c) wake me up and tell me that they were wrong and actually I’ve just got a bit of flu
- Last night I had a sleeping pill.
- Last night I slept badly
- Last night my legs had 3 layers on and were still cold
- Oh and I have rough patches on my bum! Just as an aside!!!
Oh, and I have a theory now… (ages since I’ve had a new theory!! 
)
)There are 3 buckets….
On the left is Bucket 1 .... this is the take it a day at a time bucket - it only look at the bits that you can manage. Only deal with the things that you have to deal with today. I’m in this bucket a lot!
Bucket 3 is on the right ... this is the actually what could happen bucket. This is the worse case scenario bucket. The worst case scenario includes blindness, wheelchair, death - serious ongoing pain!! This is a bucket only to be glanced into when absolutely necessary / by accident!! This is the bucket that we don’t really want to think about but need to be a little bit aware of, just in case….
And then, in the middle – there’s bucket 2.
Bucket 2 - with the knowledge of buckets 1 and 3 ..... Bucket 2 has to be how I choose to live this life now. Full stop.
I kind of feel like someone’s nipped into my life and is intent on stealing it. And here's the problem: I like the life that I have, the life that I’ve chosen. I‘m not ready for it to be changed or ripped away from me yet.
So while, potentially it might be a slightly shorter life, I still need to choose how I live it! - I can’t be sitting on a sofa moaning and p*ssing the rest of world off!! (If I’ve don’t that this morning, apologies!!!)
I haven't quite landed / arrived at the bucket 2 head space yet - but that's what we're working on!!
May your Wednesday be good.
May my GP be fulsome and helpful in her knowledge.
May her prescription kit do the necessary for my pain bombs – and may our thermostats be reading nearer 14 degrees than 8!
May the sunshine come out for you. May the hail be less violent!
Lots of love… big hugs!
The picture - is a sunset in Kaikoura with old friends in January... Bucket 2
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