Hydrangeas.
You may have noticed that I’ve not titled this post after my NMO diagnosis. 11 weeks ago if you’re interested – but I figure, it now just is!
Things to comment on currently:
It’s already that time of year and my hydrangeas are starting to pop. Fairly sure I have ‘banged’ on about this before – but having managed to prune my hydrangeas between hospital visits, I’m so excited for them to be blossoming in such numbers. All three bushes and the white one (yes I’ve definitely banged on previously!) are absolutely spewing forth. As is the bush next to the dairy that I regularly nip in to ask if I can steal some of their flowers… and they let me!
This means one of several things:
- Spring is definitely here.
- Christmas is oh so very round the corner.
- All our fans are in the basement, which is completely the wrong part of the house!
- And I don’t have enough summer tents to wear!
- Plus Mark is going to hate me when I ask him to Christmas decs – but it’s either that, or me on a ladder, and I can’t see that being allowed!
Amazing that all these things are related to hydrangeas. Pictures will be posted imminently!!
Gym!!
There was a moment when I wasn’t sure I was ever going to get back to the gym. My membership is still on pause at my usual gym BUT Becs has pointed in me in the direction of a local gym where the owner deals with, amongst other things, rehabilitation and functional fitness. So it is that three times this week I have donned my trainers and my oh so tight sports bra and done 3 sets of 15 on leg presses and rowers, face pulls and wall push ups. I had forgotten how much I enjoyed getting my body to move. And it was the first time since July that my legs felt like my own legs. The joy of moving and pushing and of feeling totally safe – nowhere to fall, nothing to walk into – it was fabulous! I’m not fixed yet, but it will help. I’ve barely moved in 10 weeks and to move was just glorious!
Balance is still all over the place. Veering right with alarming consistency and had thought it was me favouring the right with my right foot – but on closer inspection, it appears that my right is just correcting the left foot doing the over righting! Either way there are exercises to do both in the gym and at home!
Alcohol
Mmmm – consumed for the first time since July 25th. Work Christmas party was on Friday. We partied on a boat in the Waitematā harbour and the expectation was for a sunny day with dancing, drink and lunch. In the event, it absolutely, chucked it down with rain and the sunshiny dancing ended up being inside and shuffly on carpet! There was some debate as to whether I should attend. My team at work said yes – and just stay sat down. Mark said no, you’ll fall down and be out at sea. Soph said, go but don’t drink. I defied the advice of Mark and Soph, who should know me better than to tell me not to do something!! I went, I drank, I stood up a little bit and survived unscathed.
Whilst on steroids, alcohol is now to be consumed only with food, only in limited quantities and only in safe spaces, cause I’m probably going to get drunk really quick!!
It also turns out that it messes with what my meds do, at some level too – and it messes with how I feel about that as well!! I will be doing some further tests, but for now, drinking is off the agenda… maybe… I haven’t tried Pimms yet!
Steroids
No one warned me quite how long or quite how brutal steroids were going to be! This morning at an MS social I was told by more than one person that steroids really f*ck you up, but it’s temporary.
So that would be useful information!
I’m now given to understand that they are the thing that mucks about with your brain, your sleep and the roller coaster of emotions too! That would allllll have been good information before going on them!
Someone should also have said, very early in the piece – “you’re going to put on a sh*t ton of weight REALLLLY quickly – so maybe stop eating the fudge!” – OMG – I literally cannot buy clothes fast enough! Never have I felt so fat – never have I been so fat! – never have I felt so unattractive in my whole life. I know it’s temporary but just OMG!
Also interesting to know the different cultural responses to such speedy and prolific weight gain! So many lovely friends and family have told me how lovely I’m looking. My general response has been, I’m not but thank you. However, a girl who I work with regularly and who I adore, just asked me what drugs I was on because I’d put on so much weight and my face was so fat! If I’d have been drinking tea, I’d have spat it out!
Summer
It’s going to be hot – and I’m not quite sure how to navigate that. My hair is going to be a shocker. I’m going to sweat horrifically. I’m not entirely looking forward to it! Maybe my nook will continue to have dappled shade and I will manage to find my only little piece of heaven!
Family
Mark’s brother is over – they are going to cut back some of the trees, while he’s here. Mark will not see 63 if my dappled shade is hacked back.
My hair
I’m not sure what to do with it. Here’s the thing – however much money I spend on it, it’s going to be hot and floofy and sweaty and not my best look. I think I’m going to have to let it slide for a little while and maybe not see hairdresser again till the heat and humidity and steroids have calmed down a smidge.
All the above
A lot of which was actually steroids?... so it turns out that most of life at the moment revolves around how I feel about NMO and it’s effects – even when I pretend it doesn’t!
It doesn’t matter what anyone says, it’s probably going to be a year before I look in the mirror and feel like me again. Thank you to those of you who are doing your best to boost me – I do really appreciate it.
All that aside, I’m still here, I’m being treated and I should probably stop whinging. Then again, it turns out it’s a bit of a bitch of a disease. In the week after the doctors told Mark and I my diagnosis, several of them said to me on more than one occasion that they were very impressed by how well I was dealing with the fact that I had a ‘life changing illness’. To be fair, if I’d known anything about the following 10 weeks, if I’d even heard of NMO or if they’d have told me anything about what to expect, I might have dealt with it less impressively!
Other things
- you know, as well, I struggle with the fact that I still think I’m in my 30s! And now I’m moving more like a 70 year old!
- Oh – on the roller coaster? I’d got to day 12 on the nearly normal front, but then it went to custard on day 13 which was Friday.
- Maybe tomorrow will be back to day 1 again
- Still the inventory is taken before getting out of bed every morning to assess whether it’s starting off good day or a bad day.
- Still the assessment of good or bad day can be so easily turned over by the arrival or a lovely friend or a gorgeous message or, it turns out, an MS Social – who’d have guessed?
I’ve started to prattle! (STARTED to, they all cried in unison!!!)
Whatever, that’s usually a sign to pack up. I hope you got some of ‘the latest’ amongst the rubbish.
Biggest hugs – lots of love always – big snoggs xx
PS - and yes I know it's a big glass!!
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