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.

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.

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

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.

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

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

My week in pictures…

It’s been a good week. I did some lovely things and took a bunch of photos along the way. Today I’m sitting still in my jammies and recovering from the fun.

Put your feet up.

The sun came out. I wore some jelly shoes. Celebrated my favourite old man’s birthday & enjoyed my tiniest boy’s first day on the farm.

Queen st Glasgow, sculpture Kilmarnock, sangrialy h Kerr, jelly shoes Feeding donkeys

In truth I enjoyed the farm as much as the baba. How can you not love Pygmy goats & giant donkeys?

Pygmy goats, mammoth donkeys, degus,& a duck

I dressed up pretty & wore naked ladies on my nails. I bought myself some flowers and found the most amazing knickers from Wilde Mode.

ly h Kerr Wilde mode pants, lilies, tulips, sunset & project post itly h Kerr nail art

I am enjoying the clear blue skies & fiery sunsets. I have high hopes for a good summer.

Ayrshire

Do I wear you out?…

I’ve had another really bad week pain wise. It feels like I’m been having a lot of bad weeks recently and I’m tired. So very tired.

Life goes on, though. Nothing stops because I’m in pain. So, I try to keep on going too. It’s exhausting. Pain wears you out. Even before you attempt to do anything, just being in pain is tiring. I’m not sure that many people know that. You start the day fatigued. Every single task you perform from that point takes enormous effort. You’re fighting the pain and the growing exhaustion.

Drs will tell you to rest, but complete rest isn’t feasible for very many people. I can’t rely on or expect other people to take care of my life for me. My house will stay dirty if I don’t clean it, my fridge will stay empty if I don’t fill it, my bills won’t pay themselves, medical treatment doesn’t come to my house, my cat needs fed and my teeth, hair, body won’t clean themselves. Those are just the very basics of life, but they can be overwhelming when every move you make is agony. It’s a no win situation. If I neglect these basics my quality of life is seriously impacted. My stress levels soar & mood plummets. Trying to keep up with daily life saps all my energy. Pain is exhausting & exhaustion lowers your ability to cope with pain. It’s a vicious circle with no obvious escape.

Plus living is more than one’s basic responsibilities. There has to be human contact & stimulation. Unfortunately those can be just as tiring as the daily dirge. I love writing. I love swimming. Both are good for me, body & mind. Doing either involves a string of wearying steps. I have to wear myself down in the hope of benefits that are never guaranteed. I have a wonderful friends & family. Excellent relationships I don’t want to lose or neglect. However, just making myself fit to be in company is sometimes a mammoth task. I don’t even mean appearance wise. My people will accept me with no make up & greasy hair. They can handle the days that I can’t walk very far or do very much. For which I am grateful. What I can’t ask of them is to soak up my ill temper. Pain makes you snappy & negative & frankly unpleasant. No one wants to be around that. Also, no one wants to treat the people they love that way.

What do I do? I monitor myself. I constantly keep a tight grip on that grump. Take a deep breath & swallow it down. Let me tell you, maintaining that front, is exhausting. Also, essential. I don’t want to be a nasty bitch. I want to treat people with respect. Of course I gain from this; my life is immeasurably better for having date nights & sister time & lunch with my bestie & joyous mini people in it. Pain is absolutely not an excuse for being a fuckwit. It’s right that I censor myself into being nice. It’s just that it’s incredibly draining. It is the same catch 22, don’t push myself to do these things and my life would be empty. Do them & I pay the price.

None of this is anyone’s fault. There isn’t really anything anyone can do to change these things. This is just my life. Oh & a lot of other people’s too. I have this idea that maybe if we understand each other’s experience we might understand each other a little better. I think that would probably be a good thing. Further more, I’ve been trying to hold in all my grump & I am very tired.

** Apologies. I know this is not my best writing. I’m really sore & really tired.

You make me sick..

Chronic illness is a shit show. Sometimes literally. Which is thing a that often goes unmentioned. Beyond the pain, being incapacitated & generally hindered in life there is the embarrassment factor. Believe me, that’s no small thing.

Disability brings many embarrassments. Perhaps most notably, for me, is the discarding of a layer of delicacy that I cherished. I am not by nature a person who cares to discuss certain bodily functions. I don’t find toilet humour funny. I don’t need the details of your bathroom trip. I have weird anxieties about toilets/bathrooms that are not my own. I’ll hold a pee for ten hours because the toilets in the bar aren’t spotless or because I saw a hair in your bathroom. A pee used to be the absolute limit of what I would even consider doing in toilet outside my own house. Now, I long for the time when I could reject toilets willy nilly & only go in the privacy of my home. Those were the days.

These days I always need to know where the nearest ladies is. Often I can’t leave the house because I cannot be more than a few feet from my bathroom. If I go out the choice of where & when I deign to use the facilities is no longer mine. My stomach now reigns supreme. It’s not a benevolent ruler. IBD has put paid to any friendly relations between myself & my digestive system. Throw in a hiatal hernia, GERD, anxiety & fibromyalgia and you have the making of all out war. In short, my digestive tract rarely behaves. Whether it’s vomiting, diarrhoea or constipation it’s always up to no good.

Sick emoji

Now, along with cramps & heartburn & nausea & wind & reflux & horrible, horrible pain I get to deal with the crippling embarrassment. I have to worry that the public toilet will be packed when my stomach is in distress. I panic that I won’t get off the bus in time to not ruin everyone’s day with the smell of my vomit. I have to use friend’s bathrooms & worry if I’m taking too long. My boyfriend gets to listen to me throwing my guts up whilst he lies in bed; trust me, it’s not sexy.

I am constantly trying to manage these symptoms in ways that allow me to avoid talking about them. I time eating around when I will be in locations that I can easily to escape to the facilities without drawing too much attention. I’ll avoid eating before car or public transport journeys. Often, I’ll just stay home. At heart I’m still a person who doesn’t want to even allude to any of this stuff. I’ll say I don’t feel great when what I mean is one way or another the contents of my stomach are going explode. I’m embarrassed to talk about it. I’m embarrassed for other people to know much about it. I’m mortified at the thought of it getting worse.

Embarrassed chimpanzee

As hard as I find it I’m now a person who has to do these cringe inducing things ALL THE TIME. I find myself having a near panic attack in a cubicle because maybe people can hear my insides trying to get out. I’m quietly dying whilst Drs question me about my bowels. I am rushing into pubs you usually couldn’t pay me to step into to use toilets worse than the one in trainspotting. It’s awful. I hate every twinge & cramp & wave of nausea; partly because they feel rotten, but mostly because I’m embarrassed.

So, here I am talking about it. I’m hoping if I just put it out there for all to see I can stop freaking out. I know other people experience this stuff & I’d hate to be part of the silence that makes anyone else feel this rubbish. If nothing else perhaps being a bit more open will alleviate some stress, which can only be good for my tum.