If you’d asked me if spoonies can be adventurers, until very recently I’d have thought you were talking Klingon.
If you’d asked me if I knew anything about spoonies, I’d have said a strong ‘No’.
Turns out, little did I know…
If, just like I was, you’re in la-la land on this: ‘spoonie’ is a term used by chronic disease sufferers, usually to denote the physical limitations of energy and pain associated with their condition. It was coined a few years ago in a blog post (click here to read it) and now has its own hashtag. It’s a club you don’t want to join – the club where you simply can’t assume you have endless spoons of energy in any given day, like most people generally do.
You may only have one spoon that comes your way on a Tuesday afternoon. And it’s Wednesday.
So my name’s Ella, and I am a spoonie.
Last year my immune system finally crumbled. I’d rented a sea front apartment in Cornwall that was riddled with damp, hidden by swanky/ sneaky decorating. Those mould spores can prove the Devil’s dust to spoonies. A few years ago a ‘lady scan’ had revealed an infestation of endometriosis cysts. They weren’t cancer. The only real treatment path was surgery without guaranteed success. So I’d shrugged them off, got on with my life, drowned the pain with drinking and hoped for the menopause. Until the Devil’s dust hit.
Because the heads up is, you don’t shrug off a crashing immune system. That’s like shrugging off a child screaming the real scream, not just the attention-seeking one.
From my rapid ad hoc understanding of spoonies gleaned from hours of internet trawling, including scientific papers from other countries more open to this sort of condition than my own, inflammation seems at the root of many spoonie issues. A flare is some aspect of your self protective system (liver, adrenal glands or kidneys, digestive tract, thyroid… – literally ‘ad nausem’) trying to get you to hear its blood-curdling scream.
Soothing seems to be a way forward, for me at least. I’m happy to report that a complex experiment of peculiar alternative supplements is also working wonders. Acupressure seems bizarrely as good as Aspirin, or at least its best buddy. Self care isn’t just a salt bath but telling all sources of pointless stress in my life to do-one, and developing a taste for nettle leaf tea instead of Pinot Grigio.
But ‘soothing’ is not the dominant quality of travel is it? Or, is it??
True, right now building this blog is my ‘venture’ rather than travel. I’m regrouping while I experiment with my alternative concoctions. But spoonies are often spoonies for years before they know they are, or accept they are, or find a satisfactory diagnosis. One of my ventures in New York involved more bed time than sidewalk. In Tuscany I would be thrilled when the snow came to cut me off up the mountain and allow some days in PJs. My first major venture in France – nearly two decades ago – included a close call with being admitted to hospital for ‘lady issues’.
The scream of spoonies can be a low level grumble for decades.
The penny has dropped that there are things I’ve been doing, some of them for decades, that have allowed me to venture as a spoonie. I thought I was just weird, weak-gened, a bit OCD even. But I now see these are survival tactics for spoonies. And I don’t happen to venture to delicate places. I tend to choose remote (as in, find your own firewood) or wildly cosmopolitan cities (as in, wear a surgical mask on the subway).
Spoonies not only can be adventurers, but a venture may be just the self care trip that’s needed.
Try these suggestions on for size:
BED = BATTERY
You are not a wimp. Your phone runs out of energy, big deal. If you stir in a morning and feel the ‘Nope, not going anywhere…’ feeling, it just means you need more rest – NOT that you have failed. Your venture may well be to do with addressing this. Wherever you are visiting will still be there the next day. You might feel better if you just take the morning so don’t jump to the conclusion that you’ve lost a whole day. Things might feel different a few hours later.
Accept your rhythm. This is the biggest self care advice I could ever give you. Don’t fight yourself. Your condition likely has been doing that for years, so a gentle deep acceptance can work wonders in itself. Let your venture develop (read points 3 & 4 on this post if that thought makes you panic).
Of course, this depends on booking a venture that has some ‘slack’ in it rather than a frantic fortnight of scheduled sightseeing. It’s part of why I’ve developed the three month venture habit. It’s also why I don’t use hostels. I pay for a bed in a private home I can rest in, and have no guilt if I am enjoying that bed TO THE MAX at times.
Well, not too much anyway.
SLEEP PROTECTORS ARE ESSENTIALS
Brooklyn is one of my top venture places on earth. I would go there again in a heartbeat, but I would go prepared. It’s a noisy spot on the planet, spilling over with building renovation, shared apartment living, sirens, boomboxes and gospel churches. Snoozing to that soundtrack can be a challenge!
So to ensure I get my sleep I take earplugs. I also take soft headphones so I can relax or even fall asleep to music or Youtube relaxation videos. Try binaural tracks or zen style plus water or waves if you are trying to drown out noise around you. This distracts the brain enough to stop the irritation rising that kills any chance of sleep. Maybe an eye mask if you’re light sensitive? Maybe you take a super soft comfort blanket? A herbal sleep aid can also help settle your sleep rhythm in the first week.
Because sleep is essential for spoonies; you cannot laugh off a night where you only get a few winks.
Repeat as many of the things you do at home wherever you are staying. Trust your brain to get the message. Sleep through the next day if you need to. Rest is your No.1 priority.
OIL PULL & TONGUE SCRAPE
These are the yukkiest recommendations I’ll be making. And possibly the most important. I love and loathe these practices. I love them, because on my first three months in NYC I never caught a bug, not one. I loathe them because they are icky and time-consuming and when I stopped doing them it coincided with my worst health year ever.
Fluke? I started them again three months ago and haven’t caught a cold this winter…
Click here for an article on oil pulling. I will stress the need to be scrupulous with the spitting out as it’s full of toxins and can be messy (I spit into a dog poo bag, knot it and bin it). Then clean the sink really well. The tongue scraping gets easier. No, it doesn’t. It’s scraping not stroking, but all that gunk that’s festered from whatever you ingested during the day before gets lifted this way. Blow your nose. Wash hands yet again.
You get the picture. If you can wash your nostrils out, go for it.
If I ever get brave enough for that, I’ll update…
COSY SPOONIES, IN ALL WEATHERS
I’ve been in NYC on a December day that felt like summer. A year later the same day saw blizzards. Seasonal surprises are tricky to predict. Go prepared. Spoonies tend to feel the cold more, so layers can be key. My bag always has a hat, gloves and throw even on days pretending to be summer. Sitting in a draft can trigger severe muscle pain for me, even a chill I can’t shake. Whatever your condition, if spoonies get cold their immune system will not work as well as if it had been kept cosy and snug.
I’ve lived in Venice. I know what I’m saying. It took weeks to get that damp out of my bones.
Heat pads and bottles tend to be standard kit for spoonies. If you don’t have room in your suitcase, scour a cheap shop as soon as you arrive or send kit ahead. You could resort to stick on heat pads from a pharmacy, although the glue in these can add toxic load to your system, so use wisely. Consider reusable hand warmers or gel packs. As a last resort, a large empty glass jar with warm water in it can soothe. Obviously, like the dodgy taxi driver, don’t sleep with it.
SPOONIES NEED TO BE TOXIN DODGERS
Before I took my condition seriously I was a committed bottled water drinker. Super healthy, right? Oh how wrong…
Apart from the eco factor, which is significant in itself, the plastic bottles can leach chemicals into standing water possibly for months before you drink it. Add to this my penchant for the latest protein designed meals (in plastic packaging), full body fake tanning and a hairspray addiction, and my toxic levels were at fritz-level.
It’s relatively easy to eat and modify your lifestyle for your condition once you understand it. At home anyway. But on the road? It can be tricky, especially if you’re sharing a space with someone.
Carry a non-toxic travel bottle that filters tap water. Store a couple of batches in a large glass jar in the fridge for ease. Use an organic sunscreen and go half the week without makeup if that’s your thing. Deter bugs with tea tree or peppermint essential oil. Buy fresh and organic as much as you can, even if it means carrying it from the other side of the city or up a mountain. Ditch the clouds of bathroom air freshener and pop a few drops of geranium oil into the bowl as needed instead. Protect your toothbrush head with a cover. Clean with white vinegar and bicarbonate of soda.
If you check that the nearest town or city has a health store, or better still Amazon delivers reliably to your host’s address, all this is pretty straightforward. You can even have items waiting for you on your arrival. Even up a remote Tuscan mountainside – supplements solved.
Although I am still working on the hairspray replacement…
ESSENTIAL OILS ARE YOUR FRIENDS
I don’t know much, but I know enough to say that a dozen small bottles of distilled essential oils have changed my spoonie life. Apart from the impressively powerful and yet non toxic air freshener factor for the bathroom (which is no small feat!) these mini products have been my most constant friends in my challenging health trip.
Tea tree is never far away. Often I mouthwash with a dozen drops in a small cup of water (say, after a dirty day on the subway), then dab a drop up each nostril – it’s antibacterial so I figure it hits the nasties before they get a real hold. If my hand sanitiser’s empty I use a couple of drops with organic coconut oil. Diffused it clears a stuffy nose. Having spent a small fortune on anti-viral treatments for facial cold sore outbreaks that looked medieval, tea tree oil has proved the best ‘stop it dead’ topical application. Coconut oil heals the skin after if Vitamin E oil isn’t to hand.
Research well what may help you – patient forums as much as medical papers. I now have 2 or 3 oil cocktails to treat different annoying secondary symptoms of my condition in a salt bath. But do take care: less is more, and some oils will not be recommended for your condition. Lavender, in my case, isn’t as it can be oestrogenic.
You are not a witch or wizard in the making; oils in your bath are like sugar in your coffee, only good for you.
DO YOU RATTLE WHEN YOU WALK?
I don’t mean creak. I mean rattle, due to all the pills and supplements? Yep, I create my own low level percussion.
There are obvious rules here that shouldn’t need saying: don’t skip your prescribed medications for the sake of a venture. Do check with your destination country about what you can bring through customs, especially painkillers you may think are standard and acceptable – they may not be where you land. Obtain a doctor’s note to explain the drug stash that’s just freaked out their airport dogs – ideally have it fully translated if need be.
Do not take risks which may mean that part or all of your venture is spent behind bars due to a misunderstanding about your hemp oil.
Supplements often land in a grey area but may be considered food being taken across a border and prohibited. At the very least if you do risk carrying them, take unopened with explanatory leaflets and only what you will need. Be prepared to have them confiscated, have a backup plan using a health store or a local Amazon delivery – check your products are available or ask your host to help you source them.
I looked so edgy trying to get a jar of coconut oil from Canada across the US border that I triggered a full search. The first store I went to in Manhattan had shelves of the stuff.
Only you can decide whether you pack pills or supplements; my advice is to keep your stress to a minimum, soothe those adrenals, have a local plan.
AND HERE’S THE OCD BIT…
I consider myself quite a clean bunny. Even on my worst days when showering is a hollow laugh thought, there’s a lot you can do with a flannel, even in bed. Cleanliness isn’t just a perk up; it’s an infection deterrent.
But it’s not just on social media that we share everything these days.
On New Year’s Eve 2016 I attended a party. About 24 hours later I had an ominous tickle. Fast forward to March and I was still in bed drowning in a chest infection.
Spoonies can’t risk what most people shake off in a fortnight.
Master the air kiss. Move away from someone spluttering. Keep your nails short. When you get in from your day, leave your shoes near the door rather than walk that grime into your home. Wash hands as soon as you can, as well as you can, around your nose if you can too and ideally change into indoor-only clothes. Mouthwash if you fancy. Try a cup of ginger tea for its anti-bacterial properties or thyme for its anti-phlegm ones. If the shower in your rental hasn’t been used for a while, run it on hot for a few minutes (whilst you’re out of the room). Rewash plates and cutlery before you use them.
In shared spaces don’t assume others have the same approach as you do. Accept your domestic role and that you may find a cat sat in the kitchen sink (voice of experience).
FINALLY, SPEAK YOUR SPOONIE TRUTH
This is a work in progress for me, I’ll be honest. It’s not like the understanding of spoonies is widely reliable or that spoonie conditions are even accepted as real by many. So far I’ve mumbled something about a lady illness, it being a bit like arthritis and mostly I’ve waited for whoever I’m chatting with to come up with their take on it. ‘It’s a bit like fibromyalgia? Yes, kinda’. That’s as close as I’ve got.
Spoonie acceptance depends on honest talking. Smack on hand, note to self.
Tell your host or the new friends you make on your venture. Try not to pretend you’re healthier than you are in order to be accepted, if that’s a tendency. Try not to make it the first or only thing you talk about either, if that is. Normalise it: you like box sets, jazz, Scandi men, cowboy hats and sleep. Lots of sleep. While others watch porn, your cookies are likely to show a footprint of pain release videos on Youtube.
My name’s Ella and I’m a venturing spoonie…
I’m getting used to it.