Hours, days, weeks can go by and I’m absolutely fine.
I have a good life. MS is under control (just about) and no longer scares the living daylights out of me. I sometimes struggle to remember what life was like before it.
So why do I have moments when I plunge into a deep, black depression? Just like MS, there is no way of knowing when it will strike. I can have had the best of days, life is on track and the future is looking a shade more defined than before. Then suddenly the shutters come down, blocking out the light.
This sensation is like a relapse of the mind – a sudden, catastrophic descent into despair. I’m aware it’s happening, just like physical relapses when there is a period of disconnection before the symptoms flare up, snatching control of my body away from me.
I know people with MS are more likely to experience depression, whether due to our circumstances or from our brains playing havoc with our minds. Whatever the explanation, I need to find ways to cope with this. Perhaps it’s been around since MS started but I was unable to distinguish it from the shock of the diagnosis. Now life has reached a happier plateau, maybe I can see it in unsplendid isolation.
When it happens, I want to retreat, hide myself away and wait until it passes. But life gets in the way. I have a Teenager to raise and a house to run. I have a life.
My friends and family are unfortunately becoming used to helping me pick up the pieces. They catch me and hold onto me so I don’t fall any further. They don’t try to cheer me up or tell me how much worse it could have been. They are simply there for me.
If I knew how to fix this, I would. It’s an unwelcome visitor in the new life I’m constructing for me and my little family. It lifts as suddenly as it comes. Colours burst through once more and life is shiny, exciting and vibrant again.
I am trying. I can’t retreat, but I can sit out the storm.
I’m closer to my diagnosis than you, so I’ve not reached the ‘sometimes absolutely fine’ stage, though I’m working on it. I feel for you. This week I’ve been overdoing things and I’ve been driven to floods of tears – buckets of confused and inconsolable sobbing because it all seems too hard. This has always lifted in the end – you can only go so low before the only way is back up again. I think you’re right that sometimes we just have to wait, stop struggling and wait. Thanks for a great blog.
Rebecca
Thank you for your lovely comment!
Believe me, I never thought I would reach the ‘absolutely fine’ stage! I’m quite surprised I have. This is what confuses me so much. Life really is good at the moment.
You’re absolutely right though, you can only go so low until there is nowhere else to go but up. Sometimes I think the more I struggle and try to avoid the sensations, the worse it gets. I’ve just got to learn to ride out the storm…not easy!
x
I was officially diagnosed two weeks ago and even though I was expecting it, I wasn’t ready for it or the meeting with the MS nurse that followed, I cried for days after. Think I’m doing ok and feel really positive one minute and then boom the fear and darkness can just strike at anytime.
Today’s a good day, met physio, she agreed with me that there’ll be no more marathon running in meantime anyway, small steps, and yoga class beckons, I’ll be ok:)
Thankyou for your honest and witty blog, I’ve 3 boys, one teenager and two almost teenagers, life needs to continue as normal as possible, I’m just trying to get used to the new normal.
Take care,
Lucinda x
Hi there Lucinda,
It’s definitely a new normal! Honestly, it will get better with time.
I think part of my problem/situation is that there is no other adult here at home, and I’m desperate that The Teenager doesn’t feel he has to look out for me.
So I have to call in lovely adults from other parts of my life, which can be problematic and ‘last-minute-ish’.
Sorry to hear about your diagnosis. Always hard, no matter how much you were expecting it. Cherish your MS nurse! I hope she’s as lovely as mine.
Not quite sure how you cope with three boys – I am in awe!! I thought one was bad enough. Said Teenager spent the whole of last night lying in bed, clamped to his phone. Why????
x
So sorry you’re in a dark place ….the way you describe it sounds SO familiar…but you’re right it will go…hopefully soon. I’m convinced it is, as you say, almost like a relapse. I’m a happy person and when it comes there never seems to be a reason…convinces me it’s biological rather than clinical.
So look forward to your blogs….really hope you’ll soon be back on track.
X
Yup, it’s very strange. Almost exactly like a physical relapse, but of the mind. I’m sure it’s biological, as there’s no other logical reason. It’s so sudden and unexpected!
I’ll get there, in the end, lol.
X
Hi,
I am lucky with my SPMS (haha). I don’t have massive mood swings but there are moments when I am reduced to having a howl and a cry, I’m a 58 year old bloke. I’m always on my own when it happens and something really stupid will accidentaly occur. I’ll get a cup out of a cupboard to make a cup of tea but suddenly its in pieces on the floor. Maybe there is a vital ingredient for the tasty little meal I’m about to dish up and its still sitting in the kitchen scales.
The exciting thing is that you never know when its going to occur and the dog always sympathesises. My strategy is to remember that it could be worse and to remember the good times. Of course you always forget the strategy at crucial moments but hey, that’s life 🙂
Hi there!
My cat is always very sympathetic. Know it sounds weird, but she always knows when to jump on my bed and when to stay downstairs. Oops, now I really do sound like a crazy cat lady.
I do remember the good times, but when it’s dark, there seems to be no room for anything else. I will conquer this!!
x
Yet again, THANK YOU,
I am having that black hole time, even worse, went out with my friends, fell and landed on my knees, hands, oh a street full of people, but kind of heart a gentleman crossed the road to offer help. But best of all a doctor was driving past and he pulled over to ask if he could help. Back at home, I don’t want to go out ever again lol.
Oh no!!! At least I can tell you that you’re not alone. I fell over quite spectacularly in a restaurant about a year ago, cartwheeling past a table of bemused diners. The person I was with didn’t notice as he was on my phone, so I limped, sniffling, back to the table.
Black holes are awful. When I was younger, I used have a recurring dream that I was in a pitch-black tent and couldn’t find the door/flap. Black holes are like that. The more I panicked, the harder it came to find the way out. I’m trying so hard just to breathe through the whole thing. Very, very hard though….
x
How true this entire post is.
I have days like this too. More often now than before.
I am still waiting for a diagnosis but that manages to play it’s own important role in my bad psychological days I’m sure.
I hope this particular storm doesn’t last long for you, and that you have good weather for a long time after.
All the best 🙂
Hi there,
Thank you so much and I really hope the whole diagnostic process is going as seamlessly as possible for you. It can be a really rough time with it’s own difficult days.
I’m trucking along, just not quite got my head round what to do when I want to hide under the duvet but I need to cook dinner, wash school clothes and generally get on with life! Wouldn’t it be so much easier if we could pause life for a little while? But not like that film ‘Click’. That would be too weird!
x
I wanted to mention that for several years before diagnosis I suffered Seasonal Affective Disorder every winter. I knew it would come, and hoped it would leave, and it did in the spring when the temperature and light quality changed.
When I was diagnosed my neurologist put me on 5000 iu vitamin D. My level was 14 and the nurse said it should be 70 – 100. I now take 1000 iu daily. This winter has been the first in a long time that I haven’t had SAD. Apparently low vit D is common with ms and is also indicated in depression. It might have nothing to do with your episodes but I think it’s worth a look.
You come across as positive about it all but being caught under a cloud of depression is awful and my heart goes out to you.
I know the weather forecast is terrible but spend as much time outside in natural daylight as you can.
xx
That’s really interesting, Julie, thank you! I’ve never thought about having my vitamin D levels checked, so I’ll have a chat with my doctor when I see her next week for my med review.
The weather we’ve been having certainly hasn’t helped – all this endless rain! Just makes me want to curl up on the couch. The Teenager goes to London today and I had grand plans to go out tonight but think I will just stay in as it’s so grotty outside.
Thanks for flagging this up!
X
For your doctor’s info, where I live in Essex my neurologist told me they always put newly diagnosed on Vit D.
Wind and rain here too I think a lot of people will be choosing to stay in tonight!
They don’t seem to do that here as standard? Will definitely be getting the GP on the case – every little helps!
x
Going to try the vits thank you, can anyone help with falling, any tips please? Other than don’t do it lol.
When I went through a really bad period of falling, I had to learn a new way of walking and holding onto stuff – normally the nearest person, lol.
Maybe someone could suggest some tips?
x
We all have black days. Mine usually coincide with bad days when I haven’t made it outside the house. Soon as I get outside it never seems quite so bad. This past week I have been brighter than I have for a while. Bit early to tell but it seems to coincide with me implementing my new vitamins. Had a really bad time before Xmas, rubbish legs, mega tired and tingling hands. About 2 weeks ago I started with added Flaxseed Oil, upped vit D to 5000iu a day and Vitamin B12. Start of this week ( 1 week in) for first time in 18 months I have loads of energy, legs much stronger( managed over 1.5 km this afternoon) and I have sensation in my fingers I haven’t had in over 10 years. Everything seems brighter at the mo and I’m going to enjoy it while it lasts. 5 days in a row now. Coincidence probably and MS will pull my feet from under me again very soon but well…. You never know
Hi there,
Sounds like you’ve been through the mill a bit.
I’ve also read good things about flaxseed and it’s on my shopping list now!
I am having a Teenager-free weekend and getting myself back on track. Also reading more about mindfulness. Om…
x
I have had ms for 27 years am not even 40 yet .and haven a bad day to day but I will over come it good days and bad days I hate it have nt had a cry day for a good while but it just never gos away ms is always here .I was one of the youngest at 11years old now am 37 ots still gets me I hate it .but ms will never get me am stronger
You do sound stronger than it! It’s good for all of us to recognise the positive and not so great days. I like your attitude! X