Keeping my world afloat
Ever wondered what it feels like to live with mal de debarquement syndrome (MdDS)?
I don’t look sick, well, mostly I suppose. Until you see me stumble… or notice that I am not around much anymore… that I don’t seem so friendly (because even talking is now so hard).
I sometimes wonder if it would be easier to have a cast on, something that people can see, that is easy to explain… So to help you understand, here are the symptoms I have to deal with most days with MdDS and vestibular migraine.
The unstoppable, relentless movement… all the time, every moment, of every day. Constantly being off balance, feeling like I will fall – somehow, even when lying down in bed.
The panic attacks that overwhelm me some nights, as if my own body has had enough of dealing with this monster and is urging my lungs to just stop breathing.
An aching neck from all the tension and a strange pain behind my eyes and nose…
The too often splitting headache that never wants to leave, the constant pressure in my head as if it will burst like a balloon…
The brain fog that keeps me from being productive and sometimes even making sense. Ears that are somehow filled with invisible cotton wool making it hard to hear.
The nausea – always in the background, more often then I would like taking over and leaving me weak and spent on the bathroom floor…
The over sensitivity – to light, to noise, to crowds, to shops, to any amount of stress, to movement – any movement… Seemingly to life.
The all consuming fatigue from dealing with it all for far too long.
The inability to rest – even when lying in bed – having to brace against the relentless rocking and fighting off the nightmares.
The inevitable depression that comes from dealing with it all for too long.
People ask: “How are you? How was your day?” Which is kind and caring, I know. But how do you explain it? How can you help them understand how it really feels when your brain won’t engage to say what you want to?
When does responding, “Okay, thanks,” go from being a socially acceptable response to a downright lie?
For those who do want to know, this is my typical day with MdDS and vestibular migraine.
My phone alarm is supposed to be a bird song but it may as well be a fire alarm. Do I really have to do this again? Really? That feeling of dread takes hold before I even open my eyes…
There they are! The reason I keep on fighting. Cuddles in bed are the best! Then someone laughs – as they should – or moves – how could they not? Please Lord, not yet…
The room starts moving. My head starts pounding and my stomach churns… They don’t feel it.
They don’t notice my head suddenly caught in an invisible vice.
They thankfully don’t seem to notice that the bed won’t stop falling…
Hold onto the side table, the wall – just to get up. Don’t stumble… I have enough bruises already. Some days, I just can’t do it any more. The dreadful movement as the floor moves beneath my feet and the walls bend and weave.
It is all just too much.
Of course, I know this movement is not real but its effect on my body is as real as a SLAP in the face. The kind strong enough to knock you to the ground…
Kids are happily at school. No idea how.
They didn’t notice how bad I felt today. Thank God for that!
I go for a drive when it all gets too much… The movement is somehow soothing for a bit – ironic I know.
I get home to washing not done, to a floor not cleaned because these easy chores have become impossibly difficult most days.
I cancel my doctor’s appointment… Again. Surely, when you feel this bad that is what you do? Go to the doctor for help? But what is the point after trying so many?
“Sorry, what do you have again? Hmm…”
You see, I am somehow supposed to be my own expert. I have no medical training, just the hours upon hours of research I have done because I have no choice but to fight this fight for myself…
Too often the visit ends with me sitting in a frustrated puddle of tears. Again. Because nothing seems to work for any of us. Just wait it out, hopefully, it will just go away…
Talking to a man who has had it for eight years makes me feel pretty hopeless.
I crawl back into my bed… exhausted from a shower that shouldn’t be so hard.
I AM JUST SO TIRED.
Tired of feeling like a drunk at 9am without having had a drink. Dealing with the epic hangover without the fun of the party.
Watch something, anything, everything… who cares what? For too many hours… Just trying to escape my ‘new normal’.
Another day of nothing really done. I am too exhausted from clinging onto the side of this boat for months on end…
I have to drag myself out of bed to get them again. My sweet babies who I love more than life itself.
Take more pills. Put on that happy mask – please let them believe I am okay today. I just can’t seem to be with them for long enough anymore…
Too much movement… Too much talking… Too loud… Too much happy (how can that be a thing?)
Too much everything…
Just too overwhelming.
So much so that it becomes physically painful.
My friends must think I don’t care anymore – my business is certainly in tatters…
I just can’t see you as often and probably too often don’t reply to your texts on time… oh how I wish I could.
When we do catch-up, I try to be okay until you go so you don’t see me collapse in a heap after you leave from the effort your much needed visit took.
Truth be told, I would probably do anything to avoid you seeing how I really feel.
The fridge is empty again because shopping is like trying to navigate a fun house of mirrors with a trampoline floor, a sore head and churning stomach. But I get it done, somehow. Not looking up, trying to avoid anyone – as interacting – even talking, seems so hard now too.
I try not to cry in front of him anymore. I worry my pain hurts him too much.
How can I so unwillingly break his heart?
So I bite my lip. Blink back my tears and ask him about his day. But there they are anyway, those sad eyes… and my guilt.
I can’t hide this monster from him as much as I would like. So I smile (or try to), we plan the fun I know my body can no longer cope with…
I get up (if I can) and try to carry on.
Pushing through when I can barely stand.
Making dinner too often ending up with me in a heap, too nauseous to eat or even stand. But cooking was always my thing, looking after my family, making the fun, being part of the happy.
None of these are easy things anymore…
It is late, he needs to sleep. He works so hard for us each day. My heart is so proud of him, full of love for this man I get to do life with everyday.
His arms are the one place I still feel safe.
I can’t help being a little jealous that he still gets to go to work and make a difference, while I sit in the dark trying to fight off another panic attack, that if I am totally honest, a part of me would rather I didn’t win…
There is that guilt again.
That feeling is becoming far too familiar. The dark hole is getting too deep.
But they need me… and I need them more than they could ever know.
I have to cope, I have to keep going, I have to keep it all together until tomorrow. So I can do it all again.
But, we do it again, day after day, because you never know when the answer will come, when someone will find the solution to finally getting rid of this horrible monster and it can all finally just stop!
Please check the Rare Disease page(s) for related Support Organisation(s)
Mal de Debarquement Syndrome