I’m one of those smug people who’s asleep the minute their head hits the pillow.
I slumber straight through to my alarm (stupid, crashing waves on a seashore), which is why I triple-check that The Teenager has his front door key handy at all times.
Not so much recently though; I’ve even surprised him by being upright on the sofa, knocking back hot chocolate and watching Sky News wide-eyed at 1.30 am as he stumbles through the door.
Whether it’s the pesky thyroid or MS, I’m not sure. All I know is that it’s annoying, frustrating and ruining my diet (I munch on toast and pick at leftovers).
Being awake in the dead of night does strange things to my brain. I’m not motivated to add 100 words to my dissertation or go through my bank statements, things that would make me feel saintly in the morning.
Instead, my brain runs riot. Darkness creeps through my thoughts. During the day, I know I’m doing well – working, studying and most importantly, bringing up The Teenager.
However, in the wee small hours, I worry about working (how long can I do this?), studying (how long can I do this?) and The Teenager (how can I help him into adulthood, am I doing enough, am I failing?).
What will happen to me when I can no longer work? With the galling statistic of 80% of people with MS giving up work within 15 years of diagnosis, the future looks bleak and I’m 4.5 years down the line.
On the upside, perhaps I could live on a barge, cultivating pots of geraniums on the deck and gliding through canal-ways? Or move to India and live on a beach, spouting profound and inspiring words of wisdom to gauche back-packers? Or flat-share with a bunch of other mature students, labelling my milk in the fridge and avoiding the gunk in the shower?
On the downside, what happens if my MS progresses?
Without a significant other to look out for me, will I wither away? Be eaten by mice?
I’m trying to be an optimist. I’ve had great treatment. I’m determined to work as long as I possibly can. But in the back of my mind, it’s always there, the thought that one day, this may all change …
Brilliant post. Make the most of it whilst you can then.
Thank you so much!
I will try 🙂
I’ve been called a pessimist my whole life, even before the MS lol. I like to think of myself as a realist! It’s a simple fact that the chances of getting worse is pretty high. Theres nothing wrong with trying to plan ahead it’s just better for your sanity not to get bogged down thinking about it. Take care
You’re so right – planning for the worst makes sense with MS.
Oh B. Am I in denial?. Diagnosed the same time as you, (well, then RRMS in 2015), and I don’t think/worry about the what if’s?!. I may joke about them tho. I however, have a significant other, to who I suggest we run away and live in Scotland, be self efficient and hide away from the world!. We could be eaten by mice side by side maybe?. Maybe I do need to start thinking about the what if’s?. Hmm, an eye opener post. But, do keep doing what you’re doing in the meantime…one inspirational individual. :).x
And I may just hitch a lift with you guys to a remote cottage in Scotland 🙂 We’d be eaten by midges though, not mice!
During the day, the what-ifs don’t seem to cross my mind at all. It’s just in the wee small hours. I’m probably not used to haven broken sleep 🙁
Great post… But maybe we will be in the 20% who don’t give up work?? who knows?Somebody has to be☺️
So very true, and I must keep reminding myself of this! I don’t know how I’d cope, being at home all day on my own 🙁
OMG, HELP!!!,, that very black, bleak, hole, follows us, I cannot cope with the housework, ironing is a joke, the garden looks unloved. I feel like my children are losing out. My husband does not get MS, thinks I should battle on. I just want to run away and hide in a black hole and never come out. But each day we just battle on and hope someone understands. Which is why I am glad you are there for us all, as you do GET IT. Thank You xx.
Thank you so much!
I know what you mean about ironing being a joke. I retired my board 4 years ago and now only bring it out when The Teenager begs me to iron a shirt for when he goes out in the evening. Other than that, I put up with the wrinkles!
And yes, every day is a fresh battle. Gah.
I really appreciate these posts. Thanks! xx
You would be more than welcome to hitch a ride!. Ah, yes, midges. As an Aussie, I’ve never experienced the annoyance of a midge!…still wouldn’t put me off tho. :). Now, after I wrote my comment to you, it was around 11pm when I crawled into bed, (the hero was reading), and I broke. Got a few things going on atm, had bad pains last night, and just broke down – I had, had enough last night. (Yep, I had my MS tantrum)!. But, woke this morning, ready for work and pesky hospital appts straight after. Never a dull moment hey!. Hope you slept well, and here’s to more ‘lighter’ thoughts. :).
I’ve had the most awful nerve pain in my legs at night in the past and it was horrendous so I really feel for you. So glad you’re feeling better this morning!
I took The Teenager to work today. He is now exhausted, so maybe he has some idea what it’s like for me!!
p.s. midges are horrible …
Have you not heard of the 10 minute test? Take an article of newly laundered clothing, one that other people will see, wear it for 10 minutes doing your normal daily activities. If you can tell after 10 minutes that it hasn’t been ironed, then it probably does need ironing, if you can’t then ironing it is a complete waste of time. I only iron for posh dos, & my other half is better at it than I am anyway. Anyone who irons underclothes or teatowels needs their head examined!
I know people who iron their socks …