When I was a kid, five years was the difference between mittens with a string through both sleeves and a proper pair of gloves to make snowballs with stones in them (I grew up in Scotland, natch).
Or being in Primary School and Secondary, where you got your head flushed down the toilet on a daily basis.
Five years is huge. Massive. Like, really big.
Now, on the cusp of my five year MS-Versary, it feels … weird. I don’t feel that much older or more informed. I still tug those metaphorical mittens, making sure they’re safely attached.
Perhaps with an illness like MS, with so many new medicines and numerous medical trials, we struggle to find out exactly where we fit in the MS Scale, Bad to Worse.
I remember clearly the night before My Diagnosis. It was Make Or Break. I was going to present my neurologist with every last scrap of evidence (carefully assembled in my MS Notebook of ‘Most Notable and Curious Symptoms’). I was fully armed. After ten months of wandering in the wilderness, experiencing relapse after relapse, I was ready.
As it was, that same neurologist peered at my brain on his computer and said, ‘yes, MS’.
I was stunned, hugged my MS nurse for a very long time, clutched the leaflets she gave me, went downstairs and bought a Boots Meal Deal for lunch.
I went home. I cried. A lot.
Now, five years on. I’m much more savvy, sure. I’ve re-adapted a whole lot of things in my life. My main aim upon being diagnosed was to get my son in to University and I’m now mere months away. I’ve almost done it.
However, he’s no longer fooled with my Sofa Command Centre. It scares him when I sleep a lot and I don’t blame him. This last relapse has been a cruel trial at one of the most important junctions of his life.
But I’m still here.
I’m sanguine now, I think. I hope. Life is easier now I have accepted how much more difficult it is. Which sounds strange, I know. Last week, I thought my epic relapse was over and then, blam, I fell asleep twice in one day. First time was on a site visit. I was in the van, which was a bit awkward -the boss woke me up strapping soil pipes to the roof and I thought I was being attacked by vampire snakes.
I’ve taken to working in our new office, which is lovely as I have coffee on tap and I can play music on the Mac. I create colourful charts and add up scary figures for the boss.
Ultimately, this MS-Versary will be understated. Long gone are the days of my Pity Party For One. I don’t rant and rave. I don’t rail against the injustice. I will only put up one banner, and have two or three party poppers.
I will reflect. On what it is to be human. We will all get sick. Just some of us sooner than others, natch?
Love this. Yup, everybody gets sick, sometime or another. Be well. xo
And you!
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Happy MSversary…hope you won’t take offence!!! You have achieved so much in the last 5 years…I’m 13 years post diagnosis and although it’s got worse one adapts I suppose. When I read some of the things you do I think I’m a lazy sod…which I am!! Anyway celebrate with a glass or two and you’d never know 5 years from now they might have discovered some amazing new treatment…x
That’s really kind of you, thank you!
And I’m sure you’re not lazy – no one with MS is lazy!! It’s a full time job, lol.
Wouldn’t it be great if one day we could talk about MS in the past tense 🙂
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5 years? Me too in November … you’ve achieved so much . And many of us have come to look forward and even rely on your blogs. I was even starting to think “where is she?” as you’d been quiet for a while . How dare you lol!!! Sounds like you are still getting over that last relapse… what a stinker it’s been! Any word on MRI yet? I’ve just been diagnosed with advanced osteoarthritis in right knee with total cartilage loss ? Limping about until I get steroid injection in couple of weeks! I’m thinking why couldn’t someone with no other crap in their life have got the gammy knee? But it doesn’t seem to work like that! Hope the teenager is all set for the next few weeks… same in our house. It’s all about the swotting … I do feel for them. Anyway good luck to him. We kick off on 30th May! Bring it on. Keep well x
That’s so lovely!! It felt weird not blogging for a while, but I thought my post would consist of, ‘bored, relapse, trash telly, still bored’ lol.
It’s weird. I think I’m totally out of the relapse but I still have dreadful days. No word on MRI yet, so I might leave a message with the MS team. It’s the not knowing! Plus I absolutely hate being in the machine, so need a while to psyche myself up.
Really sorry to hear about your osteoarthritis. That’s a real stinker, especially like you say,when you’re already coping with so much. I hope the injections go well; I’ve heard good things about them.
Yup, it’s horrible, this exam season. He started a while back as he’s also taking re-sits. He’s got a place all sorted at uni and booked his accommodation (in the block of flats nearest the student union, of course!). But it’s all dependent on his grades. His last day of school, ever, is on Friday. Feeling quite emotional about it!
Good luck with you guys too – we can all celebrate when the last exam is over!
X
Yeh I understand the exhaustion days even when not relapsing . They just come out of the blue sometimes .. we just filled in the uni accommodation application tonight , Newcastle first and then Nottingham … she’s excited but like your guy it’s all grade dependant !!
She also went for near union ? With a definite special request NOT to be in the “alcohol free quiet accommodation” ??♀️ What’s that saying ….. “black cat, black kitten” ? X
That’s really funny – Chris did exactly the same thing! He seemed stunned that there was actually such a thing as alcohol free accommodation. I thought it was a great idea 🙂 He’s applied to University of West of England, but I’m supposed to call it ‘You-Ee’. He told me it was far enough away to be independent but close enough to Cardiff to bring big piles of laundry home. As if!
The Boss’s son has just finished his first year at Nottingham and absolutely loves it. A great uni.
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Glad everything is going well for you Barbara and good luck to your son as he embarks on the next stage of his life.
Thank you! Exciting times 🙂
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