That moment when you wake up and the pain hits you over the head with a hammer? Flare day.
The time when you can’t sleep at.all because of pain/fever/anxiety/all of the above? Flare day.
When the difficulties you deal with day to day just mushroom into impossibility? Flare day.
When living with chronic illness, disability, mental or physical, visible or invisible, we have days that are worse than others. The ‘bad’ days, the days when symptoms are stronger and strength is sapped. We all experience them, but how do we handle them?
What’s a Flare Kit?
We want so much to be well that we often don’t prep, so a difficult or ‘bad’ day happens and we have to start from scratch. To remember ‘what am I supposed to do when this happens again?’ ‘Where are the extra strong pain meds and the big heating pad?’
It’s almost like the focus on wellness prevents us prepping for difficult times. Is it fear that if we prepare for bad things, they’ll somehow happen? Are we just avoiding prepping for times we don’t want to experience? I’ve struggled with this myself, but I have learned, running 2 businesses with chronic illness, that prepping for painful times is essential.
Take x medicine for y challenge at z dosage stocked at a chemist –> Write it down in your planner.
Use three recipes regularly when sick because they are easy to throw together and digest? –> Make a note of those in your self-care kit.
Finding you try a combination of tools, tricks, meds and magic when struggling? –> Get that into a flowchart and keep it in your self-care box.
Flare Day Plan(ing)
On flare days, we can’t always make the best decisions for ourselves…
As Sarah Von Bargen says “Have you ever played that super fun game called ‘Well, I Already Screwed Up So I Might As Well Really Lean Into This Mess’?”
How often are flare days like that? I feel too sick to get up so I’ll…just eat Kettle Chips all day/watch Netflix until my eyes hurt/forget about refilling my water bottle because urrgh (delete as appropriate).
To prevent these choices which never make us feel better…our Flare Plan can include decisions we make for ourselves about common flare situations – like an advanced directive.
What will we, from the position of today, wish we had set up in place and what will we know is best for us on a bad day?
This is a plan from a place of compassion.
I DO NOT mean ‘it’s good for me to do 20 minutes of meditation or take up running, so that’s what I should do on bad days’. No. Just no. No violence to ourselves in the form of aspirational wellness resolutions, please.
(I mean, if you have a daily meditation practice or find a place of peace and solace in your meditation – somewhere I’m approaching after oh, years – then yes, that’s beautiful).
But plans can include things like: sit up, find a soft blanket to sit in, take a break in the accessible loo every two hours at the job you still have to go to and chat on your phone for five minutes. Or do 10 minutes of work and five minutes of lying still in the dark, reading a novel, or fanfic, or Netflix.
Start with the essentials not the aspirational.
I truly believe in making magic in the everyday. Also, I’m British so, starting with a cup of tea is so on my list.
What Are My Flare Findings?
To break this down, we need to pay a little extra attention to what happens for us…
- What are the signs (if any) that we are approaching a physical/emotional flare?
- What can we do to de-escalate or reduce the severity of it?
- What are the first signs of a flare itself?
For example, part of the flare can be an increased sense of spaciness and disconnection from our body or present situation. This makes us less likely to know the flare is happening. We might not notice our symptoms until we pause in an activity or change our location. Or check in with another human whose embodiment can provide a sense of calibration for our own. The more disconnected we are, the less we are able to notice the more subtle signs.
Also, especially if we are a woman/femme or have marginalised identities, then we may be living in a society which discourages us from noticing or voicing our pain and minimises or denies it when we do feel and share it. [Content warning: medical mismanagement and sexism in that link].
So we may have been socialised for most of our lives to under emphasise our own pain and our perception of it. [Content warning: medical mismanagement and sexism in that link too].
Often we find our pain is only taken seriously when it is life-threatening or severe. Or when it looks or acts like pain that is noticed (often, cis, white privilege, male pain). So we often don’t notice our own pain until it’s severe, it just doesn’t register.
(Especially if we are dissociated (consciously or unconsciously) because living so close to our pain without resources or support can rub us raw, so we often check out).
Therefore, a useful question to ask can be, how can we check in with ourselves, weekly or daily?
In a Flare…
Grab your journal, reflecting on flares/difficult symptom times, let’s ask…
- What are the first signs we tend to notice?
- What do we often do then (consciously or unconsciously)?
- What is our ‘woah’ sign? (The sign our body gives when it says absolutely enough, I am about to collapse right here.)
- What’s our current flare first aid? What works and doesn’t work about it?
- When we feel at our worst, what do we need? If someone kind was with us and offered us 40 minutes of help and support, what would we ask for?
Putting It All Together…
Here’s a (fictional) example: [Content warning: description of symptoms including anxiety and chronic pain].
Jo is an author and graphic designer, they live with their three cats (Tara, Hermione and Rose) in a small town in Montana. Jo is 37, writes mainly young adult fantasy novels and does graphic design freelance online and for some local businesses. Jo is living with fibromyalgia, rheumatoid arthritis and anxiety.
Jo’s fibro flares tend to involve painful joints and muscles, fever and headaches.
The arthritis flares are focussed in the joints and make day to day activities, like making food, doing up clothing buttons and using the computer, very hard.
Anxiety flares involve spinning thoughts, hyperventilation, intrusive persistent thoughts, panic attacks and feelings of uselessness and terror that leave Jo physically and psychologically frozen.
The flares can all come on at once as the stress of the flare of one illness can trigger another flare. They can also come in series; several flares one after another and then a break for a little while. But it’s a break Jo can’t trust at all because they are waiting for the ‘other shoe to drop’ and the flares to hit.
What are the signs Jo is approaching a flare?
Jo has looked at the patterns for so long and although they haven’t found a ‘safe’ way to stay flare-free, they have noticed that missing sleep or being unable to sleep tends to happen a few days before a flare comes. It’s not clear if they can’t sleep because of the slightly increased joint pain or if the lack of sleep contributes to a flare, but lack of sleep is a sign the flare is possibly approaching.
What are the first signs Jo notices of a flare?
The first signs Jo notices of a flare are unstable and shockingly painful joints when standing (as in, in addition to the pain Jo usually experiences). Focussing on work allows Jo some space and fulfilment, they tend to be absorbed in work and notice the pain only on trying to move.
What does Jo often do then (consciously or unconsciously)?
When Jo notices the joint pain, they are already generally on lower sleep than normal – and they don’t normally get great sleep anyway. So their judgement isn’t always in the best place. They tend to panic, try to explain the joint pain away and work twice as hard to get their current project finished before a flare hits, so they can pay the bills. They don’t take any preventative action until they get their ‘woah’ signal, because they find flares so painful and disruptive and they so, so hate flares and being sick, so they avoid it as long as possible.
What is Jo’s ‘woah’ sign?
Jo’s ‘woah’ sign in when their vision starts to get swimmy and they feel vertigo. That is a state at which they have to stop everything and take care of themselves, now, urgently, or they will likely collapse.
What’s Jo’s current flare first aid?
Currently, Jo lies down on the couch and tries to prop up their joints with pillows.
When Jo feels at their worst, what do they need? If someone kind was with them and offered them 20 minutes of help and support, what would they ask for?
Jo would ask them to bring their painkillers, and anti-inflammatories, the stronger ones for flares that are kept in the medicine cabinet.
They’d ask for some water and easy to swallow snacks nearby.
For a hot water bottle/heating pad and an ice pack in a cooler next to them so they can use that on their joints as needed.
And for someone to key up a playlist of podcasts to their iPod/device, so they can listen with their sleepphones.
They’d ask the person to help them think through their current workload, figure out what is an essential task for the current project and what is just a ‘nice to have’.
They’d then ask the friend to contact a friend they have a reciprocal agreement with who can help them get the more difficult bits finished for an agreed rate.
They’d ask them to set up an auto-responder to let current/prospective clients know they are taking time to get back to their emails and sending them to a useful page like a list of recommended resources for their projects or a free video on top graphic design mistakes you can avoid in giving your designer their brief.
They’d lean into the buffer space they’d built into the project time because everyone loves a project coming back early, but extending deadlines is tricker.
They also ask the friend to give them a hug and tell them it’s not their fault, they are doing their best and are a great person. To remind them of the amazing disabled people making things happen from their homes and beds.
Then to put their cat’s food in the automatic feeder so the cats are fed for the next few days if Jo gets stuck on the sofa. To make sure Tara, Hermione and Rose have plenty of water, to scoop their litter box and give them some fuss and maybe some rescue remedy in case they are stressed about Jo.
And to let Jo’s doctor, best friend and therapist know what’s happening. Then arrange for the pharmacy to deliver Jo’s meds. Next, ask a neighbour to check in on Jo or to arrange check-in calls daily. Lastly, get the pre-made food out of the freezer or put Jo’s Safety Box of easy food close to them.
Ideas into Action
Here’s the thing, if these systems are in place, Jo can probably do most of these things themselves, if they can take easy action (and systems make these things much easier) before their ‘woah’ sign if there isn’t anybody there.
Jo may not need all of these things, but if they are available, they can have them.
How would Jo set up these systems? By answering these questions in their journal and taking a step towards setting up a system each week, or calling in help/support to set up the systems with the help or a friend one day. Or working with me in Trailblazing Wellness Coaching.
To see these patterns, it can be useful to review your journals, if you have them. I recommend Esme Wang’s Rawness of Remembering course on therapeutic journaling. Or a tracking app, I’ve reviewed apps for illness and wellness here.
How do you handle flare days? Let me know in the comments.
Grace Quantock is an award-winning international wellness expert, coach, author, motivational speaker, certified Reiki master and spiritual response therapy practitioner. She is the founder of Healing Boxes CIC and The Phoenix Fire Academy. Currently living – and thriving – with often debilitating illness, she is the real deal and knows, firsthand, the emotional and physical roller coaster that accompanies diagnosis and life struggle. Currently, a resident of Wales, Grace loves reading, gardening and early mornings. She firmly believes that life is meant to be celebrated, and has made it her mission to help others do just that …joyfully and on their own terms. You can follow Grace on Twitter.
Image courtesy of Soragrit Wongsa.