One of the most difficult aspects of living with fibro can be the persistent recurrence of a “flaring up” of all your symptoms. Everything becomes temporarily much worse, and previously manageable symptoms suddenly become overwhelmingly difficult to cope with. You can be in flare, be having a flare, or be flaring. Flares can last for almost any length of time, ranging from a few hours or a couple of days, right the way through to a few months. It seems to be dependent on how severe your fibro is, how long you’ve had it for, how far you’ve been pushing yourself, and how much time out you can take in order to recover from the flare. If you keep on pushing yourself, you will continue to experience flares. The real kicker is that you often have no idea that a flare is on the way, so they feel like they’ve come out of the blue. The reality is that they are always caused by a stressor of some form, be it mental, physical or emotional. Always.
Fibro Flares are deeply disheartening. As everybody’s experience of fibro is slightly different from person to person, so too are the flares. Some people have IBS as part of their condition, others don’t. The illustration given here might not include all of your symptoms, and it might include some you don’t suffer from. The process, however, is common to all of us, as is the pain, depression, exhaustion and brain fog. We all get those.
Broadly speaking, it goes something like this:
You’ve just begun to learn what your current limitations are and how to accept them. You’ve made peace with the fact that you probably won’t be entering any 10K charity runs in the foreseeable. You’ve learned about pacing, or how to not do too much on those rare occasions when you suddenly have some energy available to use. You might have managed to go out and meet friends for a coffee earlier that day, or something else “normal” that you wouldn’t have given a second thought about doing in your old life. Like popping down the road to the shop(s). Or loading the laundry. Or having a bath/shower. Or getting up and actually managing to put on some clothing that isn’t pyjamas. You’ve even managed, with help, to change the bedlinen. You’re sure that you haven’t pushed yourself too far. On the whole, you’re feeling pretty pleased with yourself. You’re feeling that, finally, you’re starting to get a handle on this thing. That it’s manageable. Not easy, not convenient, but manageable.
So you go to bed, revelling in the feeling of your lovely clean sheets, feeling optimistic. You mentally compile a list of things you’re going to do tomorrow. You’re coping. You tell yourself it isn’t so bad, that there are a million other people who fight much harder battles than the ones you’re fighting. You’re lucky, really. Tomorrow is going to be another good day. You even begin to think that there’s something in this much-vaunted “positive attitude” that everyone bangs endlessly on about. You’re on top of your pain meds for the first time in months, and you’re taking some new supplements that really do seem to be helping. You’ve even had the confidence to arrange another social outing next week, leaving you enough time to rest up in preparation, and you’re looking forward to that immensely. You love meeting up with people. You always have. Things could definitely be worse. You are finding some measure of control, and that in itself helps with your stress levels.
You feel yourself slipping comfortably into sleep, which pleases you even more; ordinarily, you’d be tossing and turning with pain/discomfort, or with restless legs, or with hot sweats, or any of 116 other different obstacles to your rightful entry to the peaceful land of nod. Tomorrow is very definitely going to be a good day. You start to think you might have turned a corner. Hey, you might even be getting better!
Apparently, you’ve slept through the night – another rare occurrence that briefly fills you with hope. But then as consciousness kicks in, your first thought is a baffled “What’s wrong with my hands/ neck/ back/ hips/ legs/ feet/ chest/ throat/ eyes/ stomach/ head/ [insert other applicable body part here]?” Or, “Why can’t I move? Why does everything hurt?” Or, “What the hell’s wrong with me NOW?”
It feels like the entire fleet of Eddie Stobart lorries has repeatedly run you over in the night, closely followed by a little man with a very big hammer who must have methodically beaten the crap out of you. You also feel faint, shaky, and quite violently nauseous. Someone has obviously poisoned you whilst you slept – it’s the only explanation. It reminds you of that James Bond film where he’s pretending to be Japanese, and an enemy spy drips poison down a fine string dropped through a hole in the ceiling directly over his bed, trying to get the poison into his mouth. In the movie, it drips onto his pretend wife’s mouth instead, she licks it off her lips in her sleep and dies an agonising yet swift death. (Obviously, none of this has REALLY happened, but your brain is doing weird gymnastics in an effort to provide a logical explanation for these horrible physical sensations.) You briefly think that the Japanese wife’s death might have been preferable to the screaming pain that’s ripping through you this morning.
And why do you feel MORE tired than when you went to sleep last night? You went to bed feeling pleasantly sleepy, you had an unbroken night’s sleep, you slept for a reasonable number of hours, so why do you feel like you spent the night doing an army assault course?
Your brain isn’t working properly. You feel foggy, groggy, soggy. You can’t remember what you’re supposed to do about all these different symptoms. You don’t understand what’s going on. You just can’t think. So you just lie there.
Welcome to a full-blown flare.
At some point, you see the little pot of pills on your bedside drawers, which you or your partner/carer will have filled with your morning meds and set out the night before. This triggers you to take them. It hurts, reaching for the pills. It hurts reaching for the water to wash then down with. You ease yourself painfully back into a semi-recumbent position against your pillows, which feel flat and uncomfortable. Last night they felt full and fluffy. (- What happened to their promised magical “bounce back” properties?) But that’s the least of your concerns today. Today it all comes down to coping with this alarming exacerbation of all your usual symptoms – the very same symptoms you were congratulating yourself on managing so well last night. You might even have developed one or two new ones, just to add to the fun – a rash, a new area of pain, something else that’s changed, broken or dropped off in the night.
You realise that you’re desperate for a pee. Your IBS has also decided to join the party, and as your guts twist and cramp inside you, you realise that you MUST get to the bathroom urgently, or you’re going to poo all over the clean linen you managed to put on the bed yesterday. You realise with despair that it was probably that simple act of changing the bed that triggered this particular flare.
Getting out of bed is hard at the best of times, and in a flare, it’s more than enough to reduce you to tears. You shuffle, bent over, dripping tears on the carpet, to the bathroom. You can’t move quickly. You hope your morning pain-killers kick in soon. You barely make it, and as you collapse onto the toilet seat, you see that you have already soiled your knickers and pyjama bottoms. Tears of pain turn into tears of frustration and humiliation. You feel elderly, like an incontinent resident of an old people’s home. You feel betrayed by your own body. This isn’t your life! How can it be?
Round about now, depression kicks in with a vengeance. In a flare, this is the evil combination of reactive and chemical depression together. Hopelessness smothers you.
Once your guts have finally stopped spewing their contents into the toilet bowl, you heave yourself up and set about sorting yourself out. You sob your way through cleaning yourself up, rinsing your knickers and pyjama bottoms, pulling out one of the incontinence pads that the district nurses made you jump through hoops of of embarrassment to get delivered to you on a regular basis, and a clean pair of Bridget Jones-style Big Knickers to hold it firmly in place. You dig out a clean pair of pyjama bottoms and drag them awkwardly on.
You shuffle miserably, dejectedly, painfully back to bed. You take a double dose of your anti shit-yourself meds and hope it’s stopped. You take two of your anti-spasmodic IBS pills as well. You still feel nauseous, so you also fish out your anti-emetics from your bedside drawers. You lie down, hoping to escape into sleep. The nausea increases, and you lie there shaking, willing that pre-puke liquid that fills your mouth to go away. It’s no good. You’re going to throw up. You reach for the bowl you keep under the bed just in time to chuck up your morning pills, your pain-killers, your anti-emetics, your anti-spasmodics, and your anti-poo pills. You see them, floating by themselves in a sea of greeny-yellow bile.
You rinse your mouth with the water you keep by the bed. You wipe your mouth and hands with the kitchen towel and baby wipes you keep next to the bowl. You can’t face taking the bowl to the bathroom to empty it, so you push it under the bed instead. It will have to wait.
You think of all the things you planned to do today and realise you aren’t going to be able to do any of them. You suddenly understand the meaning of “disabled”. Your ableness has been taken away. You are literally dis-abled. Tears prick the back of your eyelids again.
Mercifully, at that point you fall asleep.
Some time later, you are awoken by a persistent noise. You dimly realise it’s the phone. You groggily answer it, squinting at the display and seeing it’s a call from one of your friends. They want to come over and pick you up, take you out and cheer you up. Lovely friend. You try to explain how you’re very grateful but that you’re not going to be ABLE to do that today, much though you’d love to. You thank them profusely, and you mean it. The acrid stench of vomit winds its way from the bowl under the bed up into your nostrils, reminding you that you still need to empty it. The idea, and the smell, makes you feel sick all over again. Because you’ve thrown up all your helper meds, you’re also still in pain, your guts are still cramping, and you’re aware that you’re quite likely to shit yourself again in the next few minutes.
And the lovely friend says,
“You know, I’m sure if you just made a BIT more of an EFFORT, you’d be fine! You can’t let your life be ruled by your illness! I thought you were stronger than that. You need to pull yourself together – you must be feeling sorry for yourself today. A bit more positive thinking, THAT’S what YOU need!”