You keep making me ill…

Body Positivity has crept into the public conversation. On the surface it seems body diversity is gaining ground. We see larger models in ad campaigns. The high street is beginning to pay a little more attention to fat customers. Social Media is awash with bopo content. However, if you scratch the surface virulent fat phobia still thrives. Any progress is good, but the dangerous aspects of weight stigma remains strong. Medical bias against fat bodies wreaks havoc. As a chronically ill fat woman I frequently face this issue. In ten years of battling illness and the medical community, I have seen little improvement.

When I began having health issues, I accepted the consensus that was fat was bad and thin was good. I was in the process of some seriously unhealthy dieting when I initially experienced quite serious gastric pain. There were other symptoms, vomiting & difficulty eating, but pain was the standout. I progressed from short bursts to hour long stints of excruciating pain. My GP said it was most likely indigestion and/or heart burn. They could be surprisingly painful, I was told. Change my diet, lose some weight and things will improve. I tightened up my already drastic diet and continued to lose weight. My symptoms did not improve. In fact, they worsened. I began to have prolonged periods of pain. It would last for days at a time, leaving me unable to eat or move or sleep. It felt torturous. By this time, I was being sent to A&E by my GP and attending myself when the pain become unbearable. Drs continued to tell me it was heartburn/indigestion. They all said the same thing, change your diet and lose weight. I was prescribed omeprazole but had no investigation. No one listened when I told then I was hardly eating. No one cared that I was losing lots of weight. All the DR’s were dismissive of my pain. Most were patronising. Some were hostile. No one helped. This continued for over a year. On my penultimate visit to A&E I was in so much pain I could barely talk. I had thrown up so much that I was only bringing up bile & blood. I saw a deeply unpleasant man who vacillated between me being an hysterical woman and being convinced I was an addict seeking drugs. He gave me a cup of peptac (which I promptly threw up) and sent me home. I felt utterly beaten that night. I knew something was very wrong.There was no way I could feel this bad and there not be problem. But no one would listen. I was tired of being judged and looked down upon. I went home and cried.

Luckily, my mum visited me a few hours later. She was shocked when she saw the state I was in and insisted we return to A&E. With someone fighting (& I do mean fighting) fit to advocate for me I was finally taken seriously. A Dr finally ordered the simple blood test that would diagnose me with pancreatitis. By the time those bloods results came back my body had gone into shock. Had I not returned to the hospital that night I would have likely died. I spent 7 days in HDU. I was catheterised. Fed only fluids via drip and given a morphine pump. I don’t even recall that first week in hospital.

Afterwards I discovered that although I didn’t fit the usual profile for pancreatitis (often older men, big meat eaters, heavy drinkers), I did have classic symptoms. The pain I had been describing was textbook. The onset and progression of symptoms was exactly what was to be expected of pancreatitis. Had someone taken a minute to listen to me I could have been diagnosed on my first trip to A&E. I really believe if I hadn’t been a fat woman, that’s probably what would have happened.

I had several more bouts of pancreatitis and a number of gallbladder issues were diagnosed in the subsequent months. Ironically, I was to discover that my weight was not the problem. The most likely culprit was spending my 20’s yo-yo dieting. The fad dieting & resultant weight loss that Dr’s had always encouraged made me ill.

Almost dying because medical professionals wouldn’t look past the size of my belly wasn’t horror enough, I have also since been diagnosed with fibromyalgia. A condition I did not suffer from before all the trouble with my pancreas. Pain specialists have told me that the physical and emotional trauma of such a prolonged period of undiagnosed severe illness is likely to have caused the fibro. So, I not only had to suffer multiple times with acute pancreatitis, I will now deal with chronic pain for the rest of my life. I wonder how different my story would if I were a size 10.

Near death experiences aside, almost every medical interaction I have involves some discussion about my weight. With multiple chronic conditions I am a complicated case. Every new symptom no matter how unconnected involves answering questions and listening to lectures about how fat I am. I must push for investigations & interventions because the first advice is always ‘lose weight’. Often, I must identify possible problems via my own research. You would be shocked at the number of times professionals have dismissed my concerns only for my theory to be confirmed when they finally do the necessary tests. I have my cholesterol, blood sugar and pressure tested an inordinate number of times and am usually met with shock that they all measure within ideal levels. When I tell medical professionals that I do not wish to discuss weight loss, my request is usually ignored. Explaining that I endured years of disordered eating and misery related to trying to reduce my size has no impact. My mental wellbeing seems entirely unimportant. Even when I am brutally honest about the fact the I used to starve myself, purge & use appetite suppressants Dr’s still advise diet plans. When my eating was at its most disordered, I was never dangerously thin. So, I was never considered at risk. The sizest attitude towards eating disorders is a whole safety issue in itself. For the record I am vegan with digestive issues that limit my diet. It would be difficult for me substantially change what I eat even if I was inclined to. All this falls on deaf ears. Weight loss remains a priority for almost every Dr I see. When I have stomach flares and lose weight because I can’t eat, I am congratulated. When I am in hospital unable to stop vomiting nurses will joke, they wish they couldn’t eat for a while. It is relentless and exhausting.

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It really doesn’t have to be this way. Fat does not necessarily mean unhealthy. Even for those who would benefit from lifestyle changes will not be motivated by harsh judgement. The impact on mental health of all this fat shaming is enormous. We know that diets do not work. Most people regain all the weight they lose and more within a year. We also know that yo-yo dieting damages our bodies. Medical weight stigma makes people less inclined to seek medical advice. If you know you will be shamed and belittled and ultimately get no help anyway, you stop asking. This bias against fat patients is dangerous on so many levels. It’s a risk to our mental health, to our physical wellbeing and to our very lives.

* health-and-the-fat-girl.tumblr.com

Got the city on lockdown…

How are you? We’re deep into lockdown now, are you managing to feel sane? It’s hit and miss this end.

I’m realising that although I spend a lot of time at home alone, I really do love the things I do get up to. Recent weeks have been lacking on outside interest. Throw in a nasty flare (& injury) and I’ve really been dredging the spoonie resources to fill the days.

The obvious place to find gentle entertainment is my beloved library. I have been re reading some old favourites. Thus providing myself with diversion & comfort. If you haven’t ventured into the world of Barbara Trapido, you’re missing out. She creates seemingly sedate middle class stories. On closer inspection her interwoven plots & sprinkling of the otherworldly are magical. One of my tattoos is partly inspired by a Trapido book. I never tire of her words.

Thumb & forefinger  holding book open

Podcasts have been another lifesaver. Excellent insomnia salve. Equally good played loud to ease me through the dreaded housework. My latest discoveries couldn’t be more different, but I am loving both. True Crime Brewery is pretty much what the name suggests. A married couple who like beer & true crime take us through a different case every week. They pick a beer from the location of the crime & give a wee review too. Dick is a paediatrician & Gill a nurse, their medical input really adds to the analysis. They both possess soothing voices that make listening to even gruesome events relaxing.

Chachi Chats is a must listen. Danni from The Chachi Power Project welcomes a new guest each episode to discuss all things Bopo. The first two episodes have blown me away. Packed full of information that everyone should know. Full disclosure, yours truly will be popping up in this podcast soon, but I am learning so much from the other guests. I can not recommend this one enough.

I did get out of this house, but only for hospital nonsense. I had a transfusion & a chest X-Ray, which revealed two cracked ribs. The good news is I look exceptionally cute in my mask from Rosana Exposito.

I’ve taken full advantage of our move to phase 1. I had some lovely garden visitors. It does me good to see these faces in person. Long may the good weather continue.

Two mum’s sitting in garden with toddlers on their knees
Black and white image of plus size women in sunglasses

In between times it’s video calls galore and taking advantage of my garden. It is a real luxury to be able to relax outside. Especially when the sun helps a little with my joint pain. Not to mention all the gorgeous wild flowers that bloom in my borders. I only wish I knew how to reach Bronan’s level of chill.

Wildflowers in a vase, women eating an ice lolly, girl laughing on FaceTime
Toddler on a swing & with shark filter
Sleeping cat
Women & child with dragon filter on video call

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

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

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

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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)

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

And a happy new year…

I think it’s fair to say that 2019 has been a shit show. A political nightmare on a global scale. Environmentally disastrous & frankly a genuinely worrying time to be alive. My faith in humanity has taken a battering this year.

It won’t be like this all the time stencilled onto a pavement

It hasn’t been an especially uplifting 12 months on the personal front either. There’s been loss, illness & a struggle for meaning. It has all felt a little pointless at various stages, but I made it. Here I am living & learning. Carrying on.

Woman in bed with teary eyes

The year got off to a heartbreaking start, but there have been ups. I cemented a crucial relationship & extricated myself from one, which in hindsight, I hadn’t wanted to be in for quite a while. My people have proven once again how marvellous they are. Circling around when needed & letting me be when required.

Txt conversation

There have been a few professional triumphs. I returned to public speaking (terrifying), embarked on a little social media consultation & posed for some excellent photographers. I produced writing I am proud of and my expanded audience significantly.

I applied myself to the task of enjoying life. It’s not always easy when dealing with chronic & mental illness; I’m pleased with my progress. My little ones continue to be of endless interest. I have immersed myself in the joy they bring as often as possible. I’ve allowed myself to enjoy time with someone lovely & undemanding. I even had some successful surgery.

Selection of pictures of children

Most importantly (I think), I have released myself from the need to know where I’m going. I always thought my biggest purpose was motherhood & letting go of that dream has been challenging. I felt bereft of meaning. It has taken time & wise counsel to discover that perhaps I don’t need all the answers right now. It’s ok to take some time to breathe & live. Hopefully other options will present themselves. In the meantime I can work on career goals and hopefully continue to squeeze maximum happiness out of life.

Path continued painted cement ground with foot & walking stick

So, it’s true. Life goes on. I suppose that’s as true on a larger scale as it is personally. We can still strive to be the change. Sadly, it looks like there will be lots of opportunities to test the courage of our convictions. I hope we prove ourselves brave.

Mirror image of fat women smiling

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* Photography Credit – Megi Aben