NMOSD – diagnosis + 10 weeks
Well Crikey! Today is Sunday. Mark is cooking steak in the kitchen. I’m at the dining/breakfast room (constant source of conflict!) table. I’ve just cleaned up the kitchen wet bits and put out all the recycling – and I’ve just hung the washing downstairs. All the things I’d have done 15 weeks ago…
(We have now eaten dinner!)
Before getting out of bed my day still starts with a mental check, an itinerary of all the bits that hurt, or hopefully don’t. At the moment, it seems to be mostly limited to waking up with a ‘burning’ back. It feels like a bad case of sunburn, but it’s manageable – even getting to the point of pleasurable in that it reminds me of holidays and sunburns long past. That said, I’m lying on my back and I know that the turn and move to sitting up before going to the bathroom will bring on the MS hug. Again, not unmanageable – but this one, not pleasant. It feels like there’s a very solid baby hanging around with a very tight corset on, that seems to move every day – and then on top of that there’s a really attractive layer of fat. Said baby, is still getting in the way of everything, including physio exercises! and also has the audacity to be uncomfortable / a bit painful! Thighs, shins, calves, feet – still feel weird! Something between tingling, pins and needles and almost numbness. And change from day to day. The move from the bed to the bathroom is probably the wibbliest part of the day, but gives me a clue as to what the rest of the day might look like! And I know that throughout the day I will get burns through my thighs and hips and all sorts of other places at the moment that I'm least expecting it!
The last 7 days have been good days. Days on which the swing is upward! There are still pins and needles in my hand, there are times when my legs really don’t want to do as directed! But, in general, 7 good days in a row. 7 days which, on the whole, have been doable. 3 of them have been in the office and the other 2 have been wfh – including my first day working from a café! This week has also included a café lunch with a gorgeous friend, evening tea date with another lovely friend and afternoon drinks (I was on tea!) date with neighbours. Yesterday I also walked back from Highbury to our place, which is 3.2K – and although there were times when I still got the finger tingles > tummy cramps > pins and needles/cramps/loss of use of my legs etc – mostly, my legs behaved and it was nice getting a proper stretch, albeit short! In fairness, there was still a lot of weaving left and right – and were it not for some righteous righting of the course, there were many times when I was heading straight for the road!
So, by and large a good week – Saturday, I even felt that I had sorted out every personal insecurity I had ever had and was secure in the knowledge of who I was, where I was in life and what I was doing. Twelve hours later sure enough, I was as insecure and confused in all those things as I ever have been before and lucky (again I say, lucky) Mark gets to deal with me. Apparently, mood swings are side effects of one of the drugs, but OMG, I swear I’ve never ever been quite so tortuously overwhelmed in such a short space of time!! Other side effects – the narcolepsy is still here!! As long as I’m upright or speaking with someone, it seems to remain at bay, but tv, computer screen, meeting or theatre it seems my eyes only have to stay focused in the same direction for about 5 minutes and my head is nodding, eyes are lolling / closed and the drooling has begun!
Mixed bag then!! Definitely getting there. Definitely less pain. Definitely more like normal.
Oh and yes – guess what the weight gain is minimalised if I eat less!! Now there’s a thing!!
So that was the NMO update…
Following on from that, some Lisa wisdom...
Have you noticed how over the years and particularly recently, nostalgia and looking backward, seems to have been given a really bad rap. It seems to be minimised? Trivialised? But my Friday morning epiphany, reminded me that as long as it's the good stuff that you’re dwelling on, this is the stuff that has made your life beautiful, and that nostalgia and a backward glance can be a really good thing.
Friday morning, I went for a little walk (2.6k), talked to a man about how we're going to get my legs working properly again, and then I sat and drank tea in the sunshine - all good positive things in the present. While I sat there, 2 little girls ran past in pink sparkly tutus and I noticed how much I’d enjoyed and how much I miss being the mum of small children. I remember the tutu age. With hair done up like sprigs of broccoli! (God knows how the mother had them out the house at 7am) but it just set me thinking to all those lovely times when my kids ran round the house in sparkly tutus and broccoli hair while I made Weetbix for breakfast - and they squealed. In fairness, Lou never had Broccoli hair and was more inclined to Mermaidom than tutus but it was a beautiful taking the moment to look backward, while my little ballerina/fairy and my mermaid are so far away!
Thing is that yes, what doesn’t kill us makes us stronger, but fairy costumes and broccoli hair, picnics by the beach and squealing, and friendships forged in the midst of too much alcohol and bad behaviour are all the things that made us who we are and the things that sustain us and make us laugh even on the crappy days. So that was my epiphany and my little piece of wisdom in the middle of my shitty stuff! Remember to look backwards!! Draw some joy and some strength from the fabulous bits in the past!
Day 8 underway already! At work, or rather, at café! Hoping jelly brain will start to work like my old brain again soon! Sure my boss does too!
May your Monday be wonderful! Huge hugs and big snogs.
xx
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