I haven't said much about how I feel lately.
You see, I have a "long term variable" condition. I mention it a lot. Mainly I say how they are largely ignored by politicians when considering welfare systems, mainly baffling to ATOS assessors with their tick-box computers and one-size fits all conclusions. Even doctors and consultants often misunderstand them.
One day you can be flat on your back, unable to move with exhaustion, the next you can be building a tent in the back garden with excited children. One day you can be dazzled by dramatic ambulance lights, the next, having a nice spa day with friends.
Since a few weeks after my surgery, I've entered the "Look Papa, look, I'm a real boy" stage. As I mentioned a few weeks ago, that doesn't mean my "fine" isn't your "I want my Muuuuuuummmmmy" but I like it. A lot.
Trouble is, if I tell you, I will invoke the wrath of the terrible, vengeful Sickie-Jinx. (Shhhhhh, just saying it makes the beast stir) He is the most horrifically evil, most cruel of all the Jinxes. He waits, until you dare to wonder; until that fleeting hope flickers across your mind, just for a second. "Could this finally be the time I stay well?" Just for a week or two, the Sickie-Jinx lets those thoughts start to whirl and bubble-up - "What if I could work again? What if I could have a "normal" life?"
If he feels particularly vengeful, he lets you enjoy a beautiful perfect day, or even a week away - on an aeroplane and everything - where your husband-carer might again become your lover-friend. He might let you take the kids out for a whole day, laughing and carefree as you walk and skip or even climb a tree with them. He will build you up until you begin to believe it could all be so, so different.
It's the belief that he feeds on. As soon as the belief is large enough, as soon as it starts to fill you up he swoops down and sucks it out of you. The very day after you built that tent or came back from that holiday, still smelling of coconut oil and sangria, he burns you down with dreadful fire. He shoves his claws deep, deep in and the pain is back. He thrashes and writhes, with you in his jaws until the exhaustion is unbearable again.
He mocks you and plays with you and the despair is deeper than before as it fills the gaps that hope had filtered into. He breathes fire onto your hopes and dreams until they are reduced to dust all over again.
Does this sound defeatist? Does it sound pessimistic? Well, that's because you never met the beast. For 28 years of my life he has slumbered, waking at the moments I least wanted him to. The night of my 16th birthday party, the day I got my acceptance letter from university, the day before my wedding, the day I got my dream job, the day I stopped breastfeeding my child and countless other precious days.
Can I slay him? So far, no-one has found a weapon deadly enough. I've tried code-words. When caring friends or desperate mothers ask "How are you" I answer "Hmmmmm" with an encouraging raised eyebrow and imperceptible nod of the head" but he always hears.
So if you ask how I am, If it's OK with you, I'll just answer "Oh, not too bad." I'll try as hard as I can not to dream, not to believe. I'll live one day at a time and manage whatever I can until the beast stirs again.
Sue - You are cursed with this (for most of us) unimaginably nasty beast, but at the same time blessed with the wonderful gift of poetry and a rare articulateness which you are generous enough to share with others, even through your pain and suffering. A shining example of humanity who deserves better. Good Luck.
ReplyDeleteEssois - Awwww, that's nice. Damn that sickie-jinx
ReplyDelete(And I like being called a poet best of all)
ReplyDeleteI totally agree with this! the sickie-jinx is sneaky, mean and tricksy, and you describe the feelings of battling with it so well... ! All the best x
ReplyDeleteI'm sure many people reading this know just what you mean... thanks for expressing the feeling so vividly!
ReplyDeletesure do Yell...hugs to all who do, in any level...
ReplyDeletex
Gods, does this sound familiar!
ReplyDeleteAt least you have words for how to describe it.
Glad I found the words guys. Funny, I only find them too when I write!
ReplyDeleteI know how that feels! I've been there so many times I tend to say "I'm fine" as anything else is seen as moaning! upset a family member as I was to ill to attend a 18th birthday party! their not talking to me because of it. the beast has me in his jaws right now and dragging me lower. Guess I've just got to deal with the silent treatment!
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I'm now an expert at 'faking it', ie being 'fine'. What many people who accuse us folks who have variable conitions of being 'fakers' 'moaners'etc fail to realise is we often fake being OK because society offers us little choice. I'd bring any conversation with anyone bar my closest friends and family to a standstill of shock and awkwardness if I said how I really felt. People are not generally O.K with being face to face with serious illness, especially if you 'look O.K' .
ReplyDeleteIronically the pressure of faking it and trying to keep up some semblance of normality probably doesn't do much good for my stress levels but sometimes I really just don't feel like being honest, as it can be painful for me too.
Sometimes, I can't answer the question at all. I always have this nasty urge to say 'Tell me, do you really want to know? Do you really want me to tell you how I feel? Thought not.' Rather than say that, like you, I say nothing much. I lie, or I just avoid the question.
ReplyDeleteI agree completely with ahotbath. I fake 'fine' as much as I possibly can. What other choice is there?
Brilliant post, Sue.
Although I have a different disease, I can fully understand. Our sense of normal is nowhere near anyone elses - because of that monster. No-one really wants to hear how you're really feeling each and every day, and to be honest, if I kept verbally saying how I was feeling, I know it would make ME depressed just talking about it!
ReplyDeleteSo - our normal is not everyone else's, but we always try and make it appear that way.
Another excellent post.
Us lupies (lupus patients) sometimes are known to refer to the illness as the "wolf".
ReplyDeleteEvery so often the wolf appears to be asleep. But you know he is only dozing. His eye opens a slit or at any moment he might bound up and knock you to the ground.
So when the wolf is doing you never say so as he might hear you. You tiptoe around doing the little things everyone else takes for granted but which you normally can't do because you have a dratted big snarling wolf pinning you to the floor!
Eventually the wolf always wakes up again. But nothing can take away the pleasure of those times when he dozes. But shhhhh! Just don't tell anyone!
I have depression & anxiety, and it's a variable condition. I do my best to avoid stress, as this makes me worse. Benefits and finding work are stressful, though.
ReplyDeleteWhen people see me those are the good days - I probably won't go out on a bad day, but if I worked I wouldn't have this choice and I'd have to go out and be useless.
When I'm feeling OK I can't remember how bad it can be, so that makes it difficult to have an assessment or fill in a form on a good day, but on a bad day I don't think I could do those things at all.
I'm feeling a lot better at the moment (i.e. not suicidal), but I've already had recurring depression through my life, so there's a high probability it will return, and I don't want to encourage that return by pushing myself too far.
That said, I'm not dossing about being a slacker. I'm doing voluntary work and other things, but I don't want to come to the attention of the DWP, because they will probably misinterpret an improvement as a recovery, and that will cause me great anxiety and worsen my condition again.
Never though about my pain as a beast, like the idea of painkillers as bullets killing it he he ! oh the idea of wrestling the beast to the ground and giving it a taste of its own medicine mmmm thanks for giving me a cheery thought on a crappy day from a crappy week, when i feel bit better i will imagine my beast frozen in ice.
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