My week in pictures…

The sun is out and I have a had a nice week. Here is what is have been up to.

I had a lovely time with some of my little ones. Everyone was feeling snuggly this week, so auntie ly got all the cuddles.

ly is cuddling baby twins and a four year old

The wildflowers I have planted have come out in force this year and they make me so happy. I have these beautiful Marguerites at my front door that make me smile every time I leave the house. Bees appear to love them and this week ladybirds were also enjoying my blooms.

Marguerites and pink flower bud surrouned by greenery d

On Thursday I met my very favourite man for drinks and some chat. It was crazy hot in Glasgow so I opted for a super floaty and light outfit. It was nice to be out and having some adult conversation. Much fun was had.

ly is standing with one hand on hip wearing sheer black maxi dress
Dress – Primark
Kimono – Simple Be

Unfortunately my body rebelled and Friday was a festival of pain. It’s looking like a weekend of rest and recovery. I hate that there is always a price to pay, but I still really cherish the days I get to do lovely things.

Black and white cat stretched out asleep on a purple sofa
Bronan approves of the plan to rest.

Nails done…

What do I do when I feel crap all the time? My nails!

Absolutely love this deep red colour. I fell in love with Chanel Rouge Noir many years ago, but now go for the more ethical Barry M vegan polish. I love a bit of negative space on a manicure; it’s an easy way to accomplish a cool effect.

Two hands showing deep red and silver manicure

Last week I fancied some really bright cheery colours. This mani was fitting for Pride month. Unfortunately they didn’t survive long after a trip to the pool. Good whilst it lasted.

Two hands one with rainbow stripesd manicure, the other with rainbow polka dots

Finally, my attempt at impressionist type floral design. I don’t think I quite hit the water lily look, but they are lovely.

And talking of that trip to the pool, it was wonderful. My sister, my bestie and I took the little ones swimming. I am much more mobile in the water. I love being able to chase them and have a proper carry on. This time I was a shark, kraken and an octopus. Much fun was had. Outfit wise I went for cute and comfy. My beloved Pockets and Sedition palazzo pants*, slouchy tee and ‘sorry not sorry’ my old saggy boobs sans underwiring.

Fat white woman with walking stick is wearing palazzo pants and t shirt
Palazzo Pants – Pockets and Sedition
Tee – Primark
Glasses – Where Light

* Brand Ambassador. Not gifted or sponsored.

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Video killed the radio star…

In my usual very late to the party I have lately been getting into YouTube. It is one of my new insomnia coping strategies. Since I am all about sharing, here are the channels I’ve been watching in the wee small hours.

If girl boss/self help influencers drive you crazy, Keyas World is the perfect counter point. It feels like toxic positivity is on the rise. Social media is full of no excuses, manifest it, take some supplements bullshit; it infuriates me. It’s all a con, they always have something to sell you and that product is usually snake oil. They target vulnerable people without the credentials to justify the advice they spew. I love the way Keya’s World debunks these charlatans with humour whilst highlighting the harm this rhetoric can do.

Women with a picture of brain on her head. Brain scan images behind her. The words Brain Scam at the top

On a similar theme there is Okay-ish. This YouTube channel & podcast is the work of Maryellen Dance, a licensed mental health counsellor. She takes on self help influencers who offer unqualified mental health advice. If you have ever watched Rachel Hollis or Mel Robbins and came away feeling shitty, you need to check out Okay-ish.

Pink background with white script okay-ish

I know why I watch true crime content; it makes feel more prepared to know all the insane tactics that dangerous people use. However, I do not know why I tend to consume it in the middle of the night. In any case when I can’t sleep ThatChapter’s non sensationalised take on true crime works for me.

Screen shot from that chapter YouTube

I can’t get The Late Show With Stephen Colbert on any of my streaming in the UK, so I was very pleased to find I could watch most of the show on YouTube. He has good guests, his monologue is funny and he just comes across as a nice man. The fact the I find him yummers doesn’t hinder my enjoyment either.

Stephen Colbert with nyc in the background.  Text says the late show with Stephen colbert

Finally, I have found YouTube to be a great resource for finding gentle Yoga & Pilates. I can’t manage much on the exercise front. Being able to do accessible routines at home has been very helpful. My current favs are Yoga with Uliana and Nhs Pilates for Beginners. Both have wide range of videos for different abilities, the nhs one is great as they have videos for specific problems. Exercise in my living room is excellent for me as getting to a class would likely use up all available spoons!

Women in pink leggings doing crossed legged Pilates stretch . Txt reads nhs Pilates for beginners

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Caught in a trap…

I’m stuck. Chronically stuck, you could say. My body has been refusing to behave for months. I’m operating at minimum capacity & maximum exasperation.

My pain levels are high and brain fog is impenetrable, but I also have a variety of ‘bonus’ complaints. This is a thing my body seems to do when I am particularly run down. A change in medication from injectable to oral about 18mths ago resulted in some messed up test results late last year (I had been against the change, but hey, what do I know?). Around the same time I had a bad cold that would not shift (definitely wasn’t covid) and culminated in Labyrinthitis. I was fairly lucky with that as I didn’t have pain, but the vertigo & nausea stuck around for ages. Into the new year the impact of that med change has made all my Long Covid symptoms more pronounced. The fatigue was never ending, a few steps left my heart rattling & my lungs crying out for air. Add a uti that quickly turned into a kidney infection. Then the three weeks of treatment required to correct the impact of changing the delivery of that medication left me vomiting all day & unable to eat. That of course messed up my electrolytes and landed me in hospital hooked up to a drip to get me back in shape. All in all it has been rough and I have struggled to get anything at all done.

That’s where feeling stuck comes in. There are so many things I want to get done. From big career moves (finish the book) to everyday task (mop the floors) it feels like everything is on hold. I am so exhausted and sore and foggy brained that it really is baby steps all the way. I write to do lists that are never completed. Every task takes a ridiculous amount of time. Proof reading each email you send three times cuts into available working time. If I put some washing in the machine, I need to rest. Some days a shower will be all I can manage. Spend a day out of the house and I need two or three days to recover. The ‘to dos’ get longer, the ideas go unexamined and I am trapped by all the unfinished everything.

It’s impossible to break free. There are things that could make my life easier, but they are of course costly. Usually a person could take on extra work, get a side hustle, but I can’t keep up with the bare minimum. If one has a deadline they could work all night. However, I can barely get through an afternoon without a lie down. Pushing myself to keep going not only results in less than my best work, but also puts me out of work entirely for days. Chronic illness pens me in. I can’t afford to buy the services & items that would make my life easier. The lack of those things contributes to worsening symptoms and limiting my ability to earn. See how it goes around & around?

I also feel welded to the spot. There are jobs I would love to accept, projects I badly want to complete, but I just don’t have the capacity at the moment. Thus, my career feels stagnant, it is heart wrenching to so badly underperform. My life is similarly entrenched. I want to see more people, have nights out, try new things. Of course, I can’t. My body simply will not allow it. I am so tired of saying no or rescheduling. It’s a no win situation my mental health suffers from being home alone so much. My physical health declines if I do too much. Again, the balance seems impossible to get right.

Finally, there is the mundane. I’d really like to have an empty washing basket. I want to be able to spend a day tidying the spare room. Instead, I do ten minutes a day for weeks and never quite get it done. It would be lovely to go out spur of the moment; but having a shower and putting on clothes can wipe me out. I never thought I would long to walk to the corner shop for cat food. Yet, here I am stuck in my house unless I can get a taxi or a lift. It is exhausting and demoralising. There is no easy way out. All I can do is wait and hope that I feel a bit better soon. I ran out of patience a long time ago.

An hour glass with iron filings

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Be running up that hill…

Chronic illness is great at kicking you when you’re down. Lamentably, it also likes to give you a dunt when you’re flying too. It would be taxing to say which is worst, but falling from a height certainly hurts.

That was me last week. I was on a lovely break in the cutest cottage by sea. Soaking up the calming sea side views and thoroughly enjoying time with my nephew. The sun was out, we headed to an incredibly beautiful beach. I watched the boy run around having the time of his life. I paddled in the refreshingly cold sea. Took deep breaths, listened to the lapping waves & felt happy.

Tide coming in on st Cyrus beach

As it edged towards late afternoon people started to leave. I began to worry about the hill I’d have to climb to leave the beach. As we packed up I saw people stroll up. I knew it was going to be a problem.

And I was correct. That little sand dune fucked me up. I started trying to ascend it alone, but quickly realised that wasn’t going to happen. It’s hard to get your footing on slopping sand. Even harder to get purchase in moving ground with a walking stick. With every step the sand slid down the hill pushing me back. It was all working against me.

Foot with black painted tie nails on the sand with wave approaching

My sister saved the day. She let me lean on her, literally & half dragged me up that hill. Every step was excruciating. My knees felt like the where going to explode. My back, wrists, elbows & shoulders were all screaming. I couldn’t catch a breath, my lungs felt as though they were filling with the sand I was slipping on.

That little sand dune appeared to go on forever. The bench at top a promised land I’d never reach. Listen, the pain was bad, it wasn’t the culprit of tears at the summit. As my sister helped me struggle I saw my 3yr old nephew gamble up the slope. An old couple comfortably passed us. A nice man with a very concerned look stopped to ask if he could help. I focused on breathing whilst my little sister pepped talked me up that hill. I repeated ‘you’re nearly there’ in my head and tried my upmost to hold back the tears.

When I finally had my bum on that bench my nephew ran to give me a cuddle. The tears started streaming. I looked at the beautiful view as I silently cried. I didn’t want to make eye contact with my loved ones. I didn’t want my little rascal to see me in this state. I recognised the concern in my sister’s voice & the love in the silent shoulder my Mum offered to hold me upright. As much as I loved them for it, I hated that I have to be this way.

View from hill over a beach.grass & wildflowers with sand past leading down to the blue sea

It was another one of those ‘how did I get here’ moments that chronic illness brings. I never imagined it’d take a support team to get me up a hill at 40 years old. I’m not a person who likes to be publicly vulnerable, yet here I am. Regularly fragile & exposed as I try to scratch out something close to a normal life. I felt guilty and embarrassed and pathetic and grateful and burdensome and scared and loved. All crashing over me with more force than the waves below could ever muster.

I concentrated on the nature around me as fought to compose myself. I attempted to ignore the curious looks from strangers & the pain coursing through my body. I listened to the the waves and birds. I let the blue horizon pull me through all the heavy implications placed on the people I love. I dried my eyes. I got back on my feet.

The day continued. Me, making my way slowly behind the others. Stopping to rest. Taking pain relief. Zoning out when we got back in the car. It was all so much bigger than that stupid hill. I was hoping I hadn’t distressed the others. Dreading the pain that I knew was still to come. Feeling sad at the thought that I probably wouldn’t ever return to that blissful beach.

It is painful to accept one’s limitations. I find it incredibly hard to let more & more go. I hate that I’m always the one who has a problem with the plans. I despise that my difficulties are so visible. Gasping for air at checkouts that take a fraction too long. Sitting on floors when there’s no seats available. Calling in advance to check if my malfunctioning body can be accommodated. I don’t like being on display, don’t want to answer questions about my stick, shake off the exasperated sighs or smile at pitying strangers. No matter how kindly meant, I’d rather be suffering in private. I’m exhausted by the knowledge that I’ll pay for every slice of fun. Even more so by the battle with myself to keep reaching for those good times anyway. Most of all I’ll forever regret how much this impacts all the wonderful people in my life. I wish I could stop being a hindrance. I never want them to have to worry. I appreciate every tiny thing they do for me, but I still wish they didn’t have to.

This is chronic life. It’s not just the pain & illness. It is all encompassing. Lots of the time the only way to deal with that is to push it to the very back of your mind. These moments of brutal clarity never stop taking me by surprise.

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Sit in the green garden…

Outfit posts are still thin on the ground because I hardly ever leave the house. When I do I rarely have the energy to put a look together. Now the sun is out I’m spending my days in the garden hoping the heat will work its magic on my joints & looking decidedly unglamorous.

ly is wearing  black bra top, paisley print maxi skirt & sunglasses

So it’s all down to the nails to keep me in the style game. I’ve leaning into the summery manicures and liking the results.

Green manicure with pink peonies
It’s peony season & they’re my favourite flower, so why not paint some on.
Blue manicure with fox on ring finger.
Our nocturnal garden visitors inspired this design.
Orange manicure with sunflower design
A burst of sunflowers always cheers me up.
Bright manicure with smiley face, rainbow &  cherries
And a little 90’s doodle themed mani.

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Another little bit gets lost…

I am not ok. I’m never really ok, but right now, I am especially not. Long covid is ravaging my life. Six months since testing positive & no improvement in the ‘left over’ symptoms. I’m really scared that I am going to be stuck like this indefinitely.

The breathlessness & tachycardia are relentless. The slightest exertion leaves my heart racing. I can’t stand long enough to brush my teeth. Moving from room to room requires a sit down recovery period. My pain & gastric symptoms have all been intensified. They show no signs of easing. Fatigue is overwhelming. My brain often feels like mush. I lose track of what I am saying mid sentence, I need lists & alarms to remember anything. I cannot get anything done.

Pulse oximeter  with heart rate at 180 & oxygen 95

Keeping up with normal life admin is a constant struggle. Cooking, cleaning, laundry, washing my damn hair have gone from difficult to near impossible tasks. Getting dressed is a mission. Trying to work is a lottery. Maybe today will be the wonderful day my brain & body both allow productivity. More likely, I will spend a week doing ten minute spurts of writing. What used to take a morning now feels like completing my magnum opus. I rarely have the energy to leave the house. A trip to the drs or an afternoon in company takes days to get over. Everything hurts massively all the time. I’m exhausted all the time. My heart pounds & my breath escapes me. Eating more often than it results vomiting. My life is getting smaller & smaller. I’m frightened.

There are no good days. Never an opportunity to catch up. I’m in a continual state of anxiety over all the things that never get taken care of. I feel useless. Stuck. I wasn’t in great shape to begin with. There were always limitations, but now they are endless. I can’t see any solution; there is no one else to do what I can’t. Even if there were, it would decimate my mental health to be that reliant.

Doctors don’t have the answers. Nor do they have the resources for many of the treatments they’d like to offer. Every referral is waiting list. My existing conditions are running riot & symptom flares do not respond to previously effective interventions. It is exceptionally hard not to feel hopeless.

Ly is wearing sunglasses, face mask &  hospital gown and standing in front of x ray sign

I’ve been here before. Each time I’ve reached a new spoonie milestone it has been hard.Realising the pain would never entirely go away, each new diagnosis, having to use a walking stick. They all took time to accept. More time to learn how to manage. Every time I add something to the list of things I simply can’t do anymore it hurts. I’ve grieved so many versions of myself. I have long let go of the idea of a normal life. This feels different. It’s not an adjustment, it is shifting most of my life into the can’t do column. No one can tell me if this will ever get better. Or worse.

It’s testing me on every level. Keeping my mental health afloat is getting harder. I have no control over this. If I push myself I feel worse for longer. I am helpless and useless. My head has no off switch. I fret about the mounting piles of unattended business. My life feels simultaneously hectic and ground to an absolute stop. The stress is too much. The pain is too much. The fatigue is too much. Every inch of living feels too hard.

All the while, life goes on. Bills need to be paid, grass cut, deadlines met. I have responsibilities & commitments. Covid isn’t anyone’s fault. I am acutely aware of how many have lost more. As guilty as I feel, that doesn’t make this any easier. I think maybe I needed to say it out loud. I am no ok. Not even close.

The words I’m not ok on black background

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Will you feel better…

My recent flare up has been tenacious. Stronger pain killers aren’t a practical long term option. As a result I’ve been trying other pain relief methods to back up my existing medication. Thankfully I have had some success, which I’m happy to share.

I’ll kick off with the simplest & easiest to access tool; the foam roller. I saw some insta posts about their usefulness with muscle pain. I had previously associated them with sports injuries & hadn’t realised it might be worth trying one myself. Over to eBay I go & purchase myself this neon friend. Including postage it cost around a tenner. They’re available in various sizes to suit different body parts. I opted for a bigger version to use on my lower back. It couldn’t be easier to use, simply amply a little pressure & roll the problem area. I’ve found it to be helpful for brief periods. I use it whilst sitting at my desk to reduce pain & stiffness. I also use it before bed so that I’m getting into bed in less pain. I’d definitely recommend giving this a try.

Orange & pink neon foam roller

Lidocaine patches are less accessible, but more effective. They deliver topical pain relief directly to a painful area. NHS guidelines on prescribing this treatment have recently changed due to cost. Meaning it is very hit & miss on which GP’s are permitted to prescribe them. The patches are only licensed (& mostly marketed) for treatment of shingles pain. However, this is only because shingles patients were used in the testing of the product. Pain specialists are increasingly prescribing this product for ‘off label’ uses. I found the 5% patches really effective at reducing pain in my arthritic knee & also fibro pain in the other areas. They don’t remove the pain, but I found a significant improvement. Unfortunately I’m not sure if I will be able to continue using them due the new restrictions. I will absolutely be pushing for them. I’d certainly suggest asking your Dr about them.

My latest discovery is Capsaicin cream. It’s derived from chilli peppers. It’s a topical cream that works by interfering with pain signal to the brain by reducing the level of a chemical (substance P) that binds with pain receptors. Studies are showing good results with Arthritis patients. I have been pleased with the relief it provides on my knee & other joints. My Gp suggested this cream & is happy to prescribe it. You can buy it over the counter (but it’s seems is not widely available yet). If you’re dealing with fibro, arthritis or similar conditions this is something to jump on.

Blue body with spine lit up orange & red

For reference I use regular pain medications along side these treatments. I’m not a medical professional, I share my experiences in the hope of helping others. If in doubt, always seek professional advice.

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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.

*

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

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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.

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