The drugs don’t work…

Yesterday was Fibromyalgia Awareness Day and I think my body knew it. My back is certainly making me very aware that fibro hurts. So much so that I couldn’t even finish this in time to mark the day. If I’m forced to know about fibromyalgia all the live long day, then I’m afraid you’re going to have to find out about it today.

Fibromyalgia difficult to manage. It’s unpredictable. You can hurt everywhere or the pain can focus on a new spot everyday. One day you might be too fatigued to get dressed. The next everything you eat sends your guts into a temper. It can have an effect on cognitive abilities, make your skin burn, muscles ache & head throb. Sometimes all the at the same time.

There’s no cure. Sufferers often experience constant pain. Treatment usually includes a combination of pain relief medication and non pharmaceutical interventions (massage, tens, specific exercises). Many also receive therapy aimed at helping accept chronic pain because treatment rarely results in the eradication of symptoms. Living with fibromyalgia means always feeling some version of unwell.

Whilst you can’t make any of us better, you can help. There are easy peasy ways to not make our lives harder.

Ditch ‘Get Well Soon’

Fibro is a chronic, incurable illness. We are never getting better. It may be well intended and seem like a little slip, but it’s exhausting. Luckily it’s simple to fix. You can express both your well wishes & your understanding of the situation with these words, I hope you have a better day soon.

Don’t offer magic cures.

Struggling with an illness that impacts every aspect of your life motivates you to get informed. Fibro folk don’t need your unsolicited advice. We definitely don’t need to hear about the same magic cures over & over. We’ve researched whatever diy fix you heard about in instagram. We try credible therapies available to us. We’ve considered our diets & yoga & cbd. We really don’t need to hear about how your cousin’s flatmate changed their life with turmeric. It’s patronising on so many levels. Stop it.

Invisible isn’t imaginary.

Fibromyalgia can be an invisible illness. It doesn’t necessarily leave any physical sign of its presence. That doesn’t mean it isn’t real. If you don’t know what fibro is, 10 minutes on google will be illuminating. No one is required to answer your intrusive questions. Medical records are private for a reason. If you don’t understand the condition, don’t worry about it. Extremely well trained medical professionals do. As a person with fibromyalgia it is not our job to convince you of the severity of the illness. It requires zero effort to mind your own business.

Don’t judge my good days.

Fibromyalgia is erratic. I never know how I will feel when I wake up. Sometimes I can go from reasonably ok to excruciating pain in the space of an hour. I try to plan around fibro, but nothing is ever set in stone. I can spread out appointments. Schedule rest days. Make a timetable for essential tasks, but my body doesn’t care. It will throw a painful spanner in the works whenever it pleases. The fact that I could do X yesterday is no guarantee that I will be able to today. An outing that I managed last week could easily leave me unable to function for days another time. I want to live as full a life as possible. So, on good days I attempt to get things done. The fear of being judged solely on those days is horrible. I’m not faking symptoms to avoid things I don’t want to do. I’m not lying when I cancel plans. In fact, the opposite is true. Most of the time I underplay how bad I feel. If I were to vocalise every dreadful sensation I’d never talk about anything else. I know my illness is frustrating. I hate that I inconvenience so many people. Please, believe that I am I trying my very best.

The hurting time…

Chronic illness becomes a way of life. You don’t stop feeling bad, but you do get used to it. Humans adapt. Pain becomes the new normal.

Most days spoonies deal with symptoms that would send healthy folk to the Dr. On bad days many would be considering 999. Chronic peeps, however, muddle through. Sometimes flare ups floor me. There are days when brushing my teeth is an epic feat. Others I function to varying degrees. I work & play & everything in between. Always, though, I hurt.

I pay the price if I over do it. I carefully plan routes & venues around how many steps will be required, if there is seating, stairs & so on. I pre check menus for items that won’t make me sick. Plan meals around when meds need to be taken. I do everything tired. It’s so hard to sleep & even when I do crash I wake feeling little difference.

Selfie of women’s sad face.

I found a way to work around my illness. Squeeze pleasure out of any socialising I can manage. I have become accustomed to cancelling things I really wanted to do. The list of things my body is no longer capable of grows. It’s ridiculous how sad felt upon realising I won’t jump on trampoline or turn a cartwheel again. Especially when I don’t even have much desire to do either. It’s just another limit. Another no.

I persevere. I follow Drs orders. I try all manner of suggested remedies. Acupuncture, cbd, floatation tanks, tens, yoga, the works. Some treatments help. There are medications that work wonders. Others that I need, but that cause problems. I take drugs to counteract the side effects of other drugs. It’s exhausting, but it’s my life.

Hand holding 5 pills of various shapes & colours

It is not all bad. I have privileges that many do not. My home is warm & safe. I have access to excellent care. I am gifted with skills & talents that allow me to pursue work I love. I have safety nets. I had years of being fit & well. I went to uni, got stuck into the partying & had the chance to travel a little. I’m loved. Pleasures great & small find me. My cat is the cutest. Life could be worse. I can handle this.

Cute black and white lying on back fluffy belly exposed

Except when I really, really can’t. There are days when chronic life overwhelms me. Days like today, when every inch of me is sore. Keeping a brave face when you’re throwing up for fifth time in as many hours is a challenge. Every day my first sensation is agony. Aching joints. Throbbing head. Burning skin. Churning stomach. Each little movement hurts. Remaining sedentary isn’t an option either. My arthritic parts seize up. Leading to, yup, more pain.

Food refuses to stay in my stomach. Don’t eat & the acid bubbles up my throat. Attempt to line my raw stomach and the vomiting makes everything worse. I can’t concentrate enough to distract myself. Sleep is illusive. There’s no escape.

Burdening others with my misery triggers my guilt. Keeping it all in is horribly lonely. Pain relief doesn’t work. Positive thinking is way out of reach. Some days are hard. It is too hard be grateful. Impossible to hang onto hope of easier times. Today I’m just thoroughly sick & tired of always being sick & tired.

Plus size women in green leopard print maxi dress  with walking stick

Now everything’s cool as long as we’re getting thinner…

I had thought that the world being turned upside down might put a dent in diet culture. It seemed that having a real and very serious health issue to contend with would get our collective perspective in order. Turns out that was naive.

If anything, it’s worse. The fat phobia has amplified. It’s coming from new & unexpected directions along with all the regular ones. It’s demoralising to realise how quickly all those supposed body positive allies throw the fatties under the bus. People I respected didn’t take long to start posting the weight gain jokes. Support for my own & other fat activist’s work has begun to feel like a part of a cultivated image. One that cracks under any pressure at all.

When you joke about the horror of gaining weight in public forums it isn’t harmless. Not only does it perpetuate stigma towards fat bodies; you’re also telling fat people what you really think of them. If you like your smaller body I’m delighted for you. Enjoy it. However, if your only response to inhabiting a slightly larger form is mockery or revulsion, you are not a Bopo ally.

This applies even more in the current crisis. During a deadly pandemic that grinds entire countries to a halt there are many things to fear. If top of your list is weight gain you might want to reassess your priorities. I am the after picture in those hilarious memes. Looking like me is not the worst thing that corona virus could do to you.

Barber before & after quarantine meme

When I’m not disappointed by folk I expected better from I am bombarded by the diet industry. The weight loss world has never missed an exploitation opportunity. Diet plans & work out programme ads have multiplied. Disreputable influencers can’t wait to wring some cash of out skinny whatever collaborations. Millionaire celebs holed up in mansions are giving us food plans to guard against stress eating. Meanwhile regular people struggle to cope isolation, lost income & fear of critical illness. The focus on the waist line is gross.

I’ve saved the worst for last. The truly terrifying part; medical discrimination. In the wake of covid 19 fat has been pathologised to an even greater extent. BMI has been incorrectly identified as a risk factor for both contracting the virus & suffering more severe symptoms. Weight has been used as a disqualifying factor when resources are scarce. In other words, fat people have been deemed dispensable. I know we’re not alone. Other marginalised groups (some I also belong to) have been marked cannon fodder too. I am ready to fight for the rights of all those people. It’s startling how many members of those groups do not reciprocate my solidarity.

If you’re thinking the jokes & fears have nothing to do with the medical discrimination, you’re wrong. By partaking in the toxic diet conversation you help create a society that considers fat bodies to be less worthy. We live in a world that permits Drs to ignore research on weight & its implications. We accept inaccuracies & damaging advice because the majority still believe that fat is bad. Fat phobia is profitable and fat people are paying the ultimate price.

Black & white photo of plus sized women in knickers holding her breasts

It’s just the way I’m feeling…

There’s nothing like a nation wide quarantine to really hammer home the fact that you’re childless. All anyone can talks about is their kids. How the silver lining of all this chaos is extra time with their cherubs. How being stuck in the house with them is driving folk crazy or all the creative ideas for activities to keep them occupied. It’s a non stop child frenzy. Unless you’re barren.

I hate that word. It feels accusatory & cold. It is, however the descriptor that keeps pushing itself into my head. Being alone in my house for over a month has contracted my world. There’s nowhere to hide. I’m content in my own company, but I’m accustomed to regular interruptions. Being unable to see friends, family or get involved in any outside work projects is tough. Those are my escapes. Adventures with little people. Laughs with big ones. Putting my skills towards something worthwhile. When you take all that away the only bit that’s left is empty.

Lilac & pink sunset over houses

There’s too much opportunity to be in my head. I’m not sleeping well, which facilitates bonus peak anxiety hours. Plus all this stress & uncertainty has opened the door to nightmares. Mostly relating to being pregnant & threatened by various dangers. With little snippets of real flashbacks thrown in for extra distress. When I’m not feeling powerless, I have a sense of being robbed. This strange, crazy time has necessitated hunkering down in family units. I don’t have one.

I have plenty of amazing people. I’m grateful, believe me. Lockdown has reinforced my belief that a husband is so not for me. With a little help from folks who are allowed outside I can manage my life just fine. If anything, it’s people to care for I want. I can’t stop myself from thinking how old my children would be now. I unintentionally look out for age appropriate lockdown activities. I imagine baking my Gran’s fruit loaf with tiny helpers. I caught myself constructing a home school lesson plan in my head. Fantasising about passing on one’s insights of the works of Lewis Grassic Gibbon is a lonely pursuit.

I have this sensation that I spend my life trying to squash. Hollow and raw. It’s as though someone scraped out all the essential parts of me with a dirty, jagged instrument. I occupy my time trying to keep the chasm sufficiently full. Packing in as many beautiful moments as I can find to prevent an inward collapse. Now my world is on hold, that void is ever present.

I know I am fortunate in many ways. I am able to stay safely at home. My housing is secure. I can video call the people I love. I will have access to healthcare if I need it. Life will resume. I do know that. I’m just struggling with the realisation that I’ll never fully heal this. Every time I think I have accepted my situation the wound is reopened & it feels fresh all over again.

Silouhette of toddler on sunny day

All that fear and all that pressure…

I’m thinking we probably have some newcomers to the world of overwhelming anxiety. Panic is a no win kind of game, but there a few cheat codes. Since I’m an old pro and a real darling, I’m going to clue you in.

Full disclosure, none of these are a cure. Anxiety is a fucker and you should definitely seek professional advice if you are worried about your mental health. However, none of these calming hacks will do you any harm & so you can totally give them a bash. They might buy you a little temporary peace or even just knock the steam off your panic attack.

Gratitude Lists

I know that sounds wanky, but bear with me. Sometimes when I’m dealing with that grinding, slow burn type of anxiety this can be helpful. I go through things I’m grateful for in my head. It can be anything. Often I’ll do the simple I have a warm house, comfy bed, not being pursued by the mob type of thanks giving. Other times I’ll get specific about factors that mitigate whatever I’m worrying about. Either way it switches my head away from catastrophising for a minute & lets me catch a breath.

Slow Sips

If you’re wholesale panicking, slowly taking small sips from a bottle can help. It forces you to regulate your breathing, which can ease the physical symptoms of a panic attack. Thus giving you an opportunity to stave off a really bad episode.

Waves of Sound

Get yourself a sound machine app. Lying awake all night feeling scared is awful. Waves, thunder storms, pouring rain are all rather soothing. This can also be helpful via earphones if you’re feeling freaked out in a public space.

Waves on Scottish beach

Play it Out

On a similar note I like to prepare playlists of songs that I know will be good for certain situations. For instance I have calming bedtime tunes, waiting somewhere stressful songs, help me do these things that need to be done lists and so on.

Child’s Pose

I know yoga isn’t everyone’s cup of tea, but it does work for me. Child’s pose in particular is very helpful for chilling my body out and making my brain stop for a minute. You can access loads of good yoga vids on YouTube. It’s worth a try to see if anything helps you feel more ok.

Repeat Yourself

This probably sounds a little dumb, but it can be surprisingly effective. In moments of panic/fear simply repeating a reassuring phrase can help. I usually go for ‘you’re ok’. The repetition and saying the words out loud has an impact.

Text ‘you’re ok’ repeated on pink & green swirly background

Hide

This probably sounds even more daft. Again, it can work. Taking yourself to a small, safe space can reduce your body’s desire to flip out. I’ve taken myself into my tiny home office & given myself a minute many a time. Being somewhere that I know no one can see me or even know I am there is great for combatting rising panic.

Dark & Loud

When the world is really too much, blocking it out us the way to go. Find yourself a dark room, get comfortable and turn some beloved music up really loud. Assaulting the senses like this aids a positive disconnect from whatever is distressing you.

Write

This one obviously works for me. Getting the terror out of your head and onto the paper/screen is a lifesaver. Something about making those words concrete rather ever growing worries is hugely cathartic. Give it a try.

We’d all love to see the plan…

Watching the seriousness of the corona virus sink into the general conscious has been a very strange experience. For the first time I am seeing healthy people get an insight into my life; en masse. It’s not pretty for anyone.

I want to preface this by saying this absolutely not an ‘I told you so’ (unless you’re a Tory, in which case, we did tell you so. Please do better). I really don’t want to see anyone suffering. I take no pleasure in the fact that a whole lot of people are about to share in the injustice & indignities that disabled people have grown accustomed to. It saddens me, but I suspect an awful lot of people are going to discover what we meant when we said this could happen to anyone. No matter how fit or successful, most of us are much closer to needing a safety net than we ever imagined before the fall.

Grlclb tories kill t shirt

*

Anyone who’s ever had long term health issues already knows that most employers do not give a shit about their well being. The chronically ill are fully aware that our government couldn’t care less if we die. I know it is hard for able bodied, healthy people to grasp, but the powers that be are not concerned with making sure you can survive. It matters not that statutory sick pay isn’t enough to live on or that some won’t even qualify for it. Big business will prioritise their profit before your health. They’ll fire as many as needs be to plug a cash leaking hole. There will be backlogs because so many desperate people require help. The DWP & all the other faceless government machines will treat you like a subspecies. Boris & his buffoons don’t care if you can’t pay rent or feed your family. The underfunded NHS will buckle under the increased strain. They’re already telling us to prepare for our loved ones to die. Let’s be honest, most of the cabinet would be quietly delighted if the vulnerable are wiped out.

As always, those with the least will suffer the most. The rich will access tests & treatment that most of us cannot. They can afford to hole up in safety & comfort. They will profit from this global crisis. Private hospitals renting beds to the NHS, politicians insider trading, corporate bail outs for tax evading entities. It has to stop.

Reina sultan tweet

It’s already evident that the every day working people are relying on each other. The community spirit is admirable. I am so glad that people are looking after each other. However, it’s time we gathered that solidarity for change. Huge, impactful societal change. We must organise. In times of crisis it becomes clear that it’s the bottom of power tree that actually make the foliage bloom. Please let this radicalise you. Find the grassroots social movements in your area and get involved. Write to your representatives. Join rent strikes, sign petitions, vote when the times comes. Remember who stood with you during this pandemic. Let’s start elevating and rewarding the people we can trust to strengthen our safety nets.

Protest sign with capitalism kills more than corona virus

* you can buy this amazing t shirt here. (Not an ad)

Up in the mirror…

I’m still struggling to up my cute to dragged through a hedge ratio. I did manage two not hideous days in a row last week & I’m celebrating by sharing those looks with you.

I had to take care of some tedious bits on Thursday. My reward for ticking off the to do list was dinner with my favourite man. I popped on this polka dot number for vegan yummies & top chat. I think I’ve only worn this once before, I don’t know why. I love it.

Mirror selfie of ly in white wrap dress with polka dots

Dress – Boohoo

Tights – Snag Tights

Shoes – Primark

I always size up with Boohoo. Their sizing is neat especially across the bust. Don’t get hung up on the number on the label, better to be comfortable in bigger size!

The next day I was ready for comfort. This dress is a dream. It’s made from the softest fabric ever. It has all the ease of a basic t shirt dress, but the drawstring waist gives just enough cinch. I felt like I was wearing jammies whilst rocking my hourglass curves.

Mirror selfie of ly in black t shirt dress with walking stick

Dress – Primark

It’s also available in tan, which I’m getting even though my darling sis said it was ugly. This is the spoonie fashion I need for the hard days.

Tan t shirt dress

All that cuteness wore me out. Today it’s back to lounge wear & sorting life admin. Bronan finds it all exhausting.

Black & white cat sleeping on cushions

Still after all this time…

It’s Friday night. I’m watching Bridget Jones’s baby (again) after which I shall go to bed & continue re reading Persuasion. Probably a pretty nice cosy night in, but Bridget & Austen are red flags for me.

I always read Austen when I feel wobbly. I find the manners & gentle wit soothing. Whenever I read about Elliots or Dashwoods they seep into my dreams. Georgian heroines winning happy endings is a definite upgrade on what’s usually swilling around my subconscious. Bridget Jones offers a similar, but slightly more bittersweet comfort. Echoes of Austen, shadows of my own experience. Sadly, sans the fairy tale ending. They amount to my mixed media version of a junk food binge.

I love some good old fashioned romance, but my own Mr Darcy is not what I’m longing for. I don’t know that I’m actually cut out for the conventional vision of love. I’ve given it some good tries; satisfaction never abounds. Perhaps what I miss is just more innocent times. Younger me believed in things I can’t muster the faith for anymore. That is both freeing and, well, sad.

I feel like I’m standing on the edge. I can’t see what lies beneath. The uncertainty scares me. I’m grinding through the days. Fighting the urge to stay in bed. Backing thoughts of blood into corners. I’m teetering on the brink of that big blank something.

Maybe this is how you feel when you’re prone to crazy and about to turn 40. Or perhaps this is just always going to happen. Remission & Relapse. Almost sounds like a novel a 21st century Jane Austen would write. She’d probably find a way to lighten to the mood. Alas, I lack her talent.

Instead I’ll borrow some well-being from her work. Mansfield Park can follow Persuasion. I might even dig out the Bridget books too. I’ll take light relief where I can get. Hold my nerve. I’ve survived steeper falls than this. There’s always safe ground waiting.

When it feels like this…

January was a rough ride. Between norovirus, ear, throat, kidney infections and good old depression I haven’t had much fun recently. Out of the longest month I had about 5 good days & I only managed to look half decent on 3 of those. As ridiculous as it sounds, i’m quite pleased with myself for pulling it together & getting out the door that much.

What do spoonies wear when they are struck with regular person illness, but still want to look cute? A new found love of wide leg trousers has been my saviour. I still prefer a flirty dress, but I’ll be seeking out more of this style. My keep warm & comfortable whilst still looking cute uniform has been a combination of the wide legs, vests & my slouchiest cardigan.

Plus size women in black wide leg trs & stripey cardi

Trousers – Elvi

T- Shirt – Pretty Little Thing

Crop Top – Asos Curve

Cardi – Daisy Street via Asos

The first iteration of this look was for lunch with my fav man. I paired my beautiful velvet trousers from Xmas with the softest crop top & sheer tee.

Plus size woman in shark vest & velvet trs

Vest – Primark

Next up was a Tuesday adventure with the boy. I swapped out the t shirt for this sharky vest. The big toothy beast with the caption harmless amuses me. The boy is also a fan of anything with a shark.

Plus size woman in leopard print trs & stripey vest

Trousers – Asos Design x La Quan Smith

Vest – Primark

Last week I made it out to see my littlest niece & all my nephews before the infections really took hold. I was feeling rough & so grateful that I’d ordered these leopard print babies. Lovely warm fabric, gentle elasticated waist & big pockets make them a spoonie dream.

And in the interest of transparency, this is what I look like the rest of the time.

Plus size woman in jammies with walking stick

Glamorous, eh?

January girl…

January is turning into quite a challenge on both physical & mental health fronts. Mood dips at this time of year are predictable, but this feels like it’s edging towards more than that. Thus, I am doing the sensible thing & taking a rest.

I’ll be still be sharing other people’s cool stuff & perhaps bits from the archives. There’ll be a pause on new content. If you begin to miss me, you can find me here & here.

Black and white cat lying in back with text, paused for inner maintenance