..what happened next...

Well you will all be very pleased to hear that I am home.

I am no longer in hospital ward, but am instead on my sofa, looking out of the window at a lovely spring day. There is a bright blue sky with cotton wool clouds threatening to start spitting at any moment – not that far off an English Spring sky!! Loving the sound of the breeze. Loving the ability to walk over and open the window at any moment. Loving that it’s my view out to so much greenness! Also loving that as I leant on my macrocarpa bench, waiting for my kettle to boil the lawn was so dense with daisies! The sun’s now shining down so that my favourite reading corner is just about in the shade and while I could potentially, go and read in my little nook, I’m just not quite sure if my reading brain has come back!!

It's a strange thing. You’d think that having spent upwards of 5 weeks in hospital, a reading fiend like me, would, in the last few months, have waded through most of her ‘to be read’ pile, and have made a bit of a start on her ‘Oooh can I borrow’ pile too, but no. This is a weird illness it seems. Not only are your legs and tummy rendered a bit useless and painful, reading is also something that has become of little interest. Talking to ‘my neurologist’ (more of that later but can I just say again that I have a neurologist?!) this morning, it’s quite usual for the illness PLUS the drugs, PLUS the sleep deprivation that comes with the illness to bring on the onset of Jelly Brain. I’m given to understand that it will subside, and that all the words I’ve forgotten will be remembered and brain will return to some kind of normal over the coming weeks. In the meantime, Mark gets to win at Boggle. I’m hopeful that I will also get to finish The Beekeeper of Aleppo before Christmas, but I’m not making any bets on it just now!

Meantime…

Pain wise, I’m paying $7.99 for an app that reminds me when to take my meds! You’d think this would not be necessary, except for the fact that yesterday was day 2 of the full whack of pills and I TOTALLY forgot the lunchtime dose of the anti-spasm pills! So, meds app + dimple packs it is!! The pain-bombs are now being tackled by 3 anti-bombs (!!)! One of them is anti the spasm – and two of them are anti the burn. The spasm seems to now be pretty under control. The burn? Ooooooooh!! When it burns it burns!! I CAN increase the ‘anti burn’ meds – but not till Wednesday morning! Till then I have a quick release ‘antiburn….’ But it doesn’t seem like it can get in there quick enough… and the burn is still burning. BUT OMG it’s soooo much better than last week. If Lou read my blog, she’d be so happy!! She saw the pain bomb full whack with spasm and burn and eyeballs nearly popping out of my head and sweats and swearing and really not a pretty sight… so much better this week. Quicker. Softer. Easier.

/So yes, went in last week, all the neuros saw me and gave me loads of new pills (!!) then the weekend happened, and they let me have a ‘weekend release’. Friday I stayed at the hospital, Mark picked me up Saturday – we had a totally pants night sleep on Saturday but then had lovely Sunday with breakfast and Bo, and friends round for coffee and laughing in the afternoon. And Sunday sleep was just beautiful!

Joyfully, and somewhat predictably, despite the fact that my bed was supposed to be kept open this morning, when we went back this morning, my bed had been given to someone else! So I sat in the whānau room and worked for the morning while Mark went to work! So we are definitely in a better place that we were last Monday. It might take a few days to settle down, and we now know who to talk to if it doesn’t – and so much in a better place than we were a couple of weeks back. Going forward, I need to stop eating, because I've eaten so much fudge and so many nice things, but normal life resumes and there’s only so many days you can go to work wearing leggings before someone raises it as an issue!

And I didn’t know how tired pain can make you. I’m totally pooped, completely walloped! Head on the desk, shattered. The tea is lovely but it’s always cold! And it’s the sneaky kind of tired, where you’re just getting on with your day and you suddenly find that your heads been lolling and you’ve been slavering all over the keyboard! Big brother had warned me, but only now has it occurred to me to talk to my boss about coming back to work while doing some half days. That’s a job for tomorrow.

Meantime, I have a pair of legs that really don’t work very well! My feet are working much better than they were 3 weeks ago, and by that, I only mean that when they touch each other, they realise that they are touching each other! My calves are ok, I think, today. My knees and thighs, oh bloody hell!! Weird as anything!! My knees feel like they’re wrapped in crepe bandages so that they are really fat. They can’t tell when they’re touching each other – and bending, is not something that they want to do. It’s also quite tough for them to feel anything else touching them! My thighs… hotness! Or total nothing at all. At any point, my leg (either) will start rising, even if the other leg is on top and just, completely of it’s own will, just rise. Meantime, the hip will just be having a burn fest…. And it won’t really stop till my foot has finished whatever it is that it’s doing! I’m told the leg / foot rising thing is a spasm and will go with the spasm med… as long as I remember to take the spasm med!!

Meantime, Neuro Physio is coming to see me on Monday. And I have to do homework by reminding the confused part of my legs what the normal part of my body feels like. So ice pack on arm, where it feels normal, then ice pack on leg which is burning…. Heat pack on arm, then head pack on burn! Also, spiky pin on normal part followed by spiky pin on dodgy leg! I feel like a lot of people have been stabbing me with a lot of pins recently. Last Tuesday, in particular. It felt as if a hole swarm of little bees / wasps were just having a wee party! Not fun!

And I started shopping again! Somehow I’ve bought 3 sticky bras instead of one! Why would anyone buy 3 bras that they’re not sure if they’re going to want! Theoretically, they may be interesting because they don’t have straps etc and my skin is super sensitive at the moment. But I don’t know if the actual stickiness will hurt my boob when it comes off. So IF I don’t know that WHY on earth would I buy 3! Since discovering this purchase, I’ve been trying to get into my account, but it won’t let me get around the whole ‘are you a robot’ thing! They are talking to me in my email, but only to tell me how important it is that they know that I’m not in fact a robot! Argh! There’s a possibility I may be selling a couple of LARGE (very) sticky bras in the next couple of weeks if anyone’s interested!!

Oh – and forgot to say that the Neuro Queen that is JP has said, in real words and with a real appointment ‘I am your neurologist’! Appt still isn’t till Feb – BUT I do have a route to talk to her, so we’re cool – I love her, she loves me, apparently, etc!!!

And things that have brought me joy today... thank you Caroline – I still have my Proteus flowers which you gave me the week of my birthday. I’ve just taken the water out of their vase (smelly!) but they are still very pretty. And Kay – toast with Boo’s homemade lemon curd on it as we drove over the bridge to the hospital this morning. Also. Deb, the Jammy dodgers, waiting for me in the pantry!

Also the daisies and the sunshine and the breeze etc!