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As the nation’s headlines wonder aloud if January 2019 is to be the coldest on record, all I can think about is: “Am I going to have a flare-up?!”
As those with chronic conditions (EDS folk, I see you) will be able to empathise, we can typically (and typically painfully) predict changes in weather and temperature with the help of our joints. For anyone with common orthopedic conditions – arthritis, osteoporosis, hypermobility – our built-in thermostat can be found in our knuckles and knees, hips and ankles. And it’s not just us: those with heart conditions, chronic headaches, diabetes, and fatigue have a similar barometer and tend to be able to predict when seasons turn and storms brew.
Pain, fatigue, darkness
When my diagnosis was still new and my gob still freshly smacked, I was routinely blindsided by flare-ups. Often seemingly at random, I would feel the rug being pulled away from underneath me and be completely unprepared in dealing with the pain, the fatigue, and the darkness (hello, mental health!).
This too shall pass.
In fact, I didn’t know I could prepare for them and do anything to ease them other than wait them out. So I’d withdraw, virtually immobilise, and succumb to hopelessness, fearing that this time the flare-up may not end after all.
Hope for the best, …
Part of my frustration with a lack of preparedness was that I am – in fact – a natural organiser: I write lists, I devise plans, I organise the sh*t out of life. But in the middle of a flare-up when the brain fog descends on logic and clarity of mind, even the stuff I’m made of can evaporate into nothingness. And, shockingly, once I’d feel better, the possibility of the flare-up’s reemergence would be pushed away and ignored. Until…
With my partner away on a business trip, I was solo-parenting when a flare hit. I was left to my own devices to not only look after myself but also our 1-year-old. The overall feeling of “being hit by a bus” (that’s the medical term) was only made worse by a lack of strength and stabbing pain in my hands. Annoying, yes, but it also made it extremely challenging to pick him up, drive (change gears, steer the wheel, etc.) and do anything for which you typically use your hands. Once our son was put at risk, a plan needed to be devised.
… plan for the worst
Over time, I observed and took note of the (largely) non-medical ways that worked best for me to ease my pain, both physical and mental. I put together a list that you plaster your walls with if it tickles you.
Download the checklist here. Pin it to your wall, give it out to friends and family (they are your support!), keep it handy for when you need it. But before you head off, let me expand a bit on the areas.
Keep doing what’s (usually) working for you. This is not the time to stop drinking water or eating badly. Try not to increase your coffee intake in a (feeble) attempt to fight your tiredness – it won’t work. Takeout and ready-meals may be convenient, but your body is in (temporary) crisis, no need to turn up the heat.
I prepare for F-Day by freezing individual meals when I cook up larger meals: stews, soups, curries all freeze very well and will keep me going even if I’m not very hungry or can’t fathom to stand in the kitchen for any periods of time.
Slow down and pace yourself. Pacing is a key chronic pain intervention for anyone with chronic pain. People with chronic conditions tend to overdo things when we feel good and do very little on a bad day. Overdoing it can cause the bad days, and the good days become fewer and fewer. If you haven’t looked into pacing yet, do it. There are a number of helpful resources online and I’ll share a post about my own pacing journey soon.
On a bad day or during a flare-up, the key is not to stop altogether but to slow down and keep activity up. Through pacing, you can find a level of activity that is tolerable and sustainable for your level of pain and fitness, on which you can build over time without over-stretching yourself (ha, do you get it? It’s a hypermobility joke).
Regardless of if you are suffering from chronic pain or if the flare actually resulted in acute pain, e.g. through subluxations or dislocations, movement is key. If I can, I go to a Yin yoga class or do some gentle yoga and stretching exercises at home (even from the comfort of my bed, see some guiding videos that I like here and this one in particular). The natural reaction to pain is rest and immobilisation but my mind was blown at how quickly I moved through the stages of flare hell when I convinced myself to go to yoga and even teach Pilates even though every fiber of my being wanted to stay on the couch. Keep moving (albeit slowly).
Avoid high stakes
I get clumsy, brain foggy and irritable when a flare is headed my way; tell-tale signs. So I remind myself to stay away from big, life-altering decisions, physical challenges (like driving or hitting the gym) and have an honest conversation with my partner that this is happening and that some things may be challenging for me for the next few days (like his particular humour).
In this cold weather, the first thing that happens to me is that my knees are seizing up. As I’m pressing on to get from A to B as quickly as humanly possible without sprinting, my knees become stiffer and stiffer, and it feels like I’m slowly but surely grinding shards of glass into sand. Pleasant. One of the best purchases I’ve made this winter were these Knee Warmers. Add fingerless gloves and a super comfy blanket and voila! I present to you: one wrapped-up Lemon.
The area most affected during flares may be different or may differ from flare-up to flare-up, so try to apply heat in a number of ways: hot baths (I add Epsom salt, a widely hailed relief agent for chronic pain, and essential oils, like Lavender and Frankincense), hot water bottles or heat pads, or heat patches.
Pain can interfere with your ability to get to or even stay asleep. During flares, having a rest and some 8+ hours of sleep are crucial for your physical and mental ability to come through the other side of it. In fact, loss of sleep can make you more sensitive to pain. You see how important it is to do everything possible for you to have a good sleep? Relaxation, hypnotherapy, a hot bath, warm glass of milk… whatever it takes to make your sleep easier to come, give this one your special attention.
Take something for it
I am working very hard in order to be able to say that “I don’t take any regular meds.” Don’t get me wrong I’m not shaming myself or anyone else for needing to take pills – when it’s necessary and that person is better for it, physically or mentally, the meds are doing what they are designed to do. Personally, for me, the burden of the side effects has, in the long run, outweigh the benefit, which is why I put a lot of effort into staying clear.
My ‘staying clear’ went so far that I had to actively remind myself to take pain killers during flare-ups. It’s silly, I am in pain, take pain meds. So here’s me telling you: Take something for it.
Thankfully, a healthy dose of ibuprofen takes the edge off for me. When I maxed out on my allowance for ibuprofen, I switch to paracetamol as advised by a chronic pain specialist. I don’t kid myself. The pain doesn’t go away, but it isn’t as paralysing and debilitating.
I mean this in a physical as well as a philosophical way. If you have braces for the areas of your body that are most affected, use them. While long-term use of braces can lead to weakening of the muscles that are crucial to support your joints, in the short-term, they give you the support to protect and keep in place what feels (and is) fragile and weak.
Philosophically, and this one is harder and something I keep working on, I am referring to a support system. Those closest to me – if family by blood or by choice – love me and want me to feel better. And, trust me, they hate every single second of seeing me in pain and would do anything to make me feel better. Unfortunately, there isn’t much they can do, but it helps if I tell them. I tell them the reason why I cancel social engagements, why I’m being in a foul mood or why I’m sleeping a lot. The little guy who stole my heart won’t understand it for a while (who does?!) but the big guy needs to hear it to remind him of my fragility. Part of his support to me is his commitment that he won’t go away for business if I feel something coming up. Part of his support is that we set aside money from our shared account for flare care, like cab money if I don’t trust myself to drive to pick our kid up from nursery. Whatever it takes.
Make yourself comfortable. It could be a while. No need to dress up, squeeze into tight clothes or uncomfortable shoes – there’s no one out there that needs impressing. You need taking care of.
In bed, use pillows and cushions to get cosy. My right hip would ‘fall through’ and make my back ache or my knees hyperextend, so I push a small pillow or folded up blanket underneath my right buttocks or my knees to prop it up. Could that work for you?
Take a moment and ‘allow the pain.’ Part of my dealing with the pain as it persists is my resilience and mindfulness. I use an app, called Buddhify, and its module on allowing pain (it’s called Pain & Illness and has five sessions of varying length that guide you through your thoughts and feelings).
See Support. One of the bigger challenges for me were my loneliness in this. Nobody else, however hard they try, can feel what you feel both physically and mentally. During flare-ups, I’ve had some truly dark thoughts that make me shudder right now, only briefly alluding to them. I felt guilty for not showing up for friends, for not pulling my weight as a parent, for … you name it. I felt worried and concerned about what is yet to come and how I could possibly manage. I felt hopeless and down.
It’s not easy for anyone who cares about you to hear any of it and they may battle their own demons (and actually feel let down, disappointed, unloved… everything you may worry and feel guilty about), but more likely than not, they will be able to see past it and be by your side to pick you up, to guide you and for you to lean on.
And finally… this too shall pass. It may be days or weeks, but eventually you’ll get through it. We usually do.
What are your tips and tricks to get through it? I’d love to hear what helps, eases and relieves.
Featured image by Rawpixel.