‘Remember: the time you feel lonely is the time you most need to be by yourself. Life’s cruelest irony’ – Douglas Coupland
This last week, I have been lonely to the point of the blackest ever distraction.
It has at times been charming, seductive, all-enveloping. But mostly it is simply black.
I have no idea what has happened. Nothing has changed. Life continues as normal. Me and The Teenager still have a laugh, although mostly him laughing at me for not having seen the youtube clip of Emma Stone lip-synching to something or other (honestly, not that great).
He has called up Domino’s pizza to complain that he didn’t have a thin-crust as ordered and was promptly delivered a free one. A good point to discuss the market economy and its wider implications (no?) until he took said pizza plus our jumbo-sized tomato sauce upstairs to Skype like-minded friends. (yeah!!!! Wicked!!!! You should try it!!!!!).
Anyway. Black. I know depression is a feature of MS. I laughed it off to start with. I’m 40, reason enough to be a little down that I am still a ‘divorced single parent, with Teenager, cat, MS and compost heap’.
But this is different. I can’t seem to shake it off. Which makes me a lousy friend. Don’t get me wrong, work is fine, more than fine. I’ve finally found something I’m actually quite good at, apart from picking up towels and washing rugby boots.
I said to myself this morning, ‘you must be nice to everyone you meet’. Which meant letting everyone into the traffic. At rush hour. Not bad. It worked. I waved and was waved back. Lovely. I stopped off at the shop and bought some black pudding (long story).
After work, I got home. The blackness once more. My dream of someone, anyone, recognising that I am actually a nice person to be with, fading into the background. I am alone. I have a fabulous son, a beautiful house, a great life and ,um, MS, but life is good, so why don’t I go along with the ride?
I am an introvert right now. I don’t really know who I am, post-MS. Everything has changed without me keeping up to speed. I think I have been left behind.
I am doing really well with MS and I know I will cope whatever comes my way. The joys of been a stubborn Yorkshireman but I make it my life aim to cope with whatever crap it wants to throw at me, but November 18th is the anniversary of my diagnosis and no matter how jolly I tried to make myself for about a week I like you say went dark. I couldn’t explain it . I found myself deep in inner thought and it wasn’t nice. But you come out of and it’s time to carry on. Your not alone, thinking of you x
Thanks Tony, what a lovely comment!
It’s been the strangest week, totally unexpected. One minute everything was fine, the next, nothing. Just this weird darkness. I’m trying everything to pull myself out of it but it’s hard. Maybe because my 2nd MS anniversary is coming up soon, a bit like you found?
I am dragging myself out this morning. It’s my day off but the last thing I think I should do is hang round the house all day!
x
I don’t no what to say, when the BLACK hole appears life is S—
It sure is. Especially when it’s so unexpected. I have nothing really to feel upset about (apart from the usual!). Just came out of the blue.
x
Who are you, who do you want to be, what do you expect from others and of yourself? Like anything in life, how do you “cope”? You’ve answered these questions yourself. Fear of the unknown and you acknowledging it is part of the ‘blackness/emptiness’ you feel. This is/can be you reaching out to and by loved ones. They will be more than happy to help. If you feel that you wouldn’t want to burden them, this is the exact opposite, you’ll be glad you did and so would they. We’re all human.
“We are children Of One Creator, One Family, One People, One Race – THE HUMAN RACE, linked by Love, Respect, Understanding, Compassion, Friendship & Harmony”. Shri Prakash Gossai (1953 – 2009)
Very, very true. I am lucky, I have a close circle of friends and a wonderful family.
This last week, I have actually been affronted by the black cloud, if that makes sense. How dare it drop down,right now, just as life is slotting back in to place??
I am sure it won’t last – I’m trying everything in my power to keep on track.
x
Having kids around is great, and friends too, but they don’t fill the gaping hole that exists in the absence of romance. Keeping busy with people, work and hobbies helps but really……. if it’s what your heart desires then it’s tough.
Know that you are not alone though, and try and remember that whatever mood you are in, it is temporary and will pass.
Loneliness and boredom are really hard, and depression is just awful, I have weird and random bouts of all of these but it does always shift at some point.
Chocolate anyone? xxx
Thanks Julie!
I think what I miss more than anything is someone ‘there’. I don’t think I fancy a full-blown relationship (life’s toooo busy, lol), but just someone who looks out for me, takes an interest, etc. Perhaps I fear that I will never find that again.
And as for chocolate, well, chocolate is always there! I have bought a rather large Aero bar in honour of the Eurovision tonight and I can’t wait!!
x
Back when they still thought I had MS, a neurologist once said to me, matter of factly: “You have depression.” I hadn’t mentioned depression, but it was (and is) true. I was surprised. He said it wasn’t situational, although it was a depressing situation. It was a simple fact of having a demyelinating disease. “Anyone with an MRI like that has depression. It’s a neurological fact,” he said.
Plus, it *is* a crappy and depressing thing to live with. You have to contemplate things that most others in their 40s don’t yet have to contemplate. Really scary things.
Another thought…back in the day before I became decrepit and still traveled internationally, I used to sink deeply into the blues after coming home. There’s a real adjustment back to day-to-day life after a trip like you just took. I used to consider it part of the traveling process–come back, be depressed. And that was before coming back meant coming back to dealing with the day-to-day minutiae of chronic illness, etc, and all the mental weight that comes with what you’ve been living with. Your depression at the moment is completely understandable. And, although understandable, it’s completely miserable. I really feel for you. I sympathize. I constantly feel out of sorts and left behind these days, too, as if the world somehow has gone on and is doing its thing, and I no longer seem to fit into it. Maybe it’s also an aspect of middle age (speaking for myself)… I just don’t know.
That’s a really interesting comment.
I have definitely had a couple of these inexplicable, sudden descents into blackness since MS. Wholly unexpected and sudden, a bit like MS symptoms, lol. So maybe it is a symptom? A pesky fault in the wiring.
I’m the same with travelling and coming back, although it tends to happen sooner, rather than a couple of weeks later. Not sure.
Yesterday, bizarrely after I wrote the post, a glimmer of sunshine peeked through my mind again. Just a little. But enough to make me feel a lot more positive again.
This is why I miss you guys – you always suggest things I haven’t thought about. Maybe if this happens again, I should just view it as a temporary exacerbation of symptoms, rather than something permanent!
x
I’ve been quizzed by neuros a fair amount about how often I suddenly cry or laugh for no reason, or have wild mood swings. It *is* a symptom of a demyelinating illness (along with more general depression). My husband has a completely different kind of neurological disorder, but our mental symptoms frequently overlap. I do think that neurologist was spot-on–that the disruption in wiring affects mood as much as anything else.
So… I’ve been eating more chocolate too. What else can one do?
(And I sure am glad you decided to return to the blog!)
Yup, the more I have thought about it today, the more convinced I am that this is connected to a ‘minor’ flare up, MS-wise.
As suddenly as the blackness descended, it’s lifted. Colours look brighter, the world is more open again and that dreadful mental sluggishness and hopelessness has vanished. That’s what confused me so much. Life is on the up and up right now, so I had no idea where this came from.
I have had a lovely slice of chocolate cheesecake this evening which has also lifted my spirits!
It’s strange to be blogging again – especially after I ended it – but I sure have missed you all. I know I can’t blog every other day as I did before, but I do think I’ll keep posting. It’s been incredible to see how much support I had with the blog and the time after I ended it was hard. It’s great to write about something on my mind and get great and positive feedback!
X
So sorry to hear BUT sounds like you know how to face it. Keep busy today then home for chocolate AND the Eurovision. All been there and thinking of you x
The chocolate definitely helped! Plus the usual craziness of Eurovision put a smile on my face…
x
When I was dxd my neuro said it would take me a couple of years to get used to it. I carried on as usual – with the added plus of crying myself to sleep every night – assuming that I wa just ‘fine’. It was almost exactly two years to the day when I realised that I was actually really fine – my life was no worse, no better – just that life with MS was different. I really feel for you xxx PS your lad is a teenager so has no awareness of anything outside his little bubble – he’s just getting on with life as if nothing has happened to you. You’re ‘just’ his mum – he might remember every now and again that you have the extra MS burden but it is nowhere near as important as his pizza order.
This made me laugh out loud!!! You’re absolutely right – in the grand scheme of things, I come slightly below a thin-crust pizza.
Thank you for your lovely comment!
x
Enjoy the laughter of the show, enjoy the chocolate, I think the black clouds are in Wales today, I have not moved of my sofa. Xx xx
It was fab! Just woken up to another gloomy day, weather-wise, but it doesn’t help I still have a stinking cold. Meh.
x