Ordinary pain…

I have shared some of my pain management techniques in the past. Recently I’ve been experimenting with some new methods and I thought I would share how I have been getting on.

First is a product I have mentioned before, but have only recently been able to properly try. Lidocaine Patches are hard to come by in the UK. They’re expensive and so can only be prescribed by the NHS for a very limited number of conditions. They’re mainly used inpatient and for short periods. I had been able to try them for an incredibly short period of time a few years ago. I found them helpful, but wasn’t able to get a longer term supply. The surge in my pain levels this year sent me into research overdrive. Time and again I read articles & personal accounts of how amazing lidocaine patches were for arthritis & fibromyalgia. I discussed it with my GP who agreed that they would be a good option for me, but she wasn’t permitted to prescribe them. After much searching I found a way to source the patches and bought them myself. They are not cheap. I had mine sent from Canada, 10 patches were approx £60. For me, they are proving worth it. The patches offer excellent relief for my joints. They don’t eliminate pain altogether, but they do vastly reduce it. Patches can be applied directly to the skin and remain on for 12hrs. They offer pain relief for that entire period (the last few hours you can feel their effect lessening). I have also found the patches ease my more extreme period cramps. My approach is to use the patches on my very worst or most active days. I wish I could afford to apply them everyday, but with head to toe pain, that’s just not possible right now. I’m not happy that NHS treats chronically ill & disabled patients this way. Tying a Dr’s hands & leaving then to prescribe treatment that they know is ineffective is utter bullshit. I am however crazy happy that I can now access the patches. I know that not everyone has the means to buy things like this themselves (I won’t always). There is much to be done in the fight for disability rights. In the meantime I am doing what I can to get by.

I’m late to the simple concept of squared breathing. In all the therapy, meditation, pain management sessions etc I have done it’s strange that I didn’t learn about before. I’ve tried umpteen breathing exercises. All touted as a wonder cure, none ever succeeded in doing anything but annoy me. Imagine my surprise when the simple act of breathing in for four, hold for four, out for four, hold for four and repeat actually worked. Squared breathing doesn’t reduce pain, it reduces the panic I feel when my pain starts climbing out of control. Holding off that panic is game changer. All the tension that comes with freaking out increases pain. The whirring fear severely impacts my ability to make clear decisions. In short, the panic makes a horrible situation worse. Carving myself a little bit of time to think with this exercise actually makes a big difference in those unbearable moments.

Diagram explaining squared breathing

Finally, we have CBD. Not a new or unknown thing. This is another one I tried before, but only recently perfected. In the past I tried cbd gummies & oil. I didn’t have much success with either. I found the huge array of products overwhelming. I couldn’t quite work out what strength & how much I needed to find relief from my symptoms. The gummies had no impact. The oil was a little better, but the taste made me gag (& sometimes throw up). The after taste contaminated my mouth the whole day. Every site I looked at seemed to offer different advice. I became confused and favs up. A couple of months ago I tried some disposable CBD vapes. A very knowledgable member of staff in a local shop helped me. In no time at all I had finally worked out the right strength for me. I have now invested in a refillable vape & stocked up on oil. I’m using 10% organic vision cbd oil with a minty fresh flavour, which is very palatable. It’s helping with headaches, muscle pain & stiffness.

Multi coloured vape pen on wooden background

As always, I want to remind everyone that I am not a medical professional. I am only describing what has worked for me. Please consult your Dr before making changes.

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.

Is it really ok?

‘It’s ok not to be ok’. I can’t remember when it started, but it certainly picked up steam. It’s now the standard social media friendly, I support mental health awareness tag line. I know it is well intentioned, but increasingly, it doesn’t ring true.

Of course, in theory, it is true. It is normal to experience mental health issues. It’s fine to admit that you struggle. It is important to normalise mental illness. If you say it out loud, I am not ok, what happens next? If you’re lucky someone listens; someone cares. Maybe they ask what you need. Perhaps you get that help. The first time. Maybe.

It’s ok not to be ok in orange text with green quotation marks

What happens when the person you tell has no idea how to respond. What if you spill your guts to a doctor who doesn’t take you seriously. Or who does want to help you, but only has waiting lists to offer. Around 70% of those referred for mental health assessment in Scotland wait at least 18 weeks*. That’s a very long time to feel helpless, especially when there is no guarantee of treatment. What do you when the not ok doesn’t go away? Or if it keeps coming back? You try really fucking hard to be ok. You do the therapy and the meds and the hard work. It takes a long time. It’s gruelling and painful. All the time you know lots of people aren’t getting any treatment. You feel guilty that your receiving assistance that others aren’t. Even more so when the help hasn’t helped. You’re aware that the people who love you are scared. Your hurt hurts them. They want ‘ok’ as much as you do.

And you want it for them. When it slips from your grasp it’s harder to say it again. People have their own lives. Sometimes they might be struggling. Or they may be fabulous; enjoying some well deserved happiness. Everyone has stresses and responsibilities. Our lives keep us busy with the good and bad. Everyone must earn a living, manage their relationships, have fun. Who wants to be the person who complicates that? Not me.

When you’ve already done everything you’re supposed to do it’s hard to know how to banish the cloud. If the expert advice doesn’t do the trick how can well meaning friends help? Even when you really want to reach out there’s always an impediment. You don’t want to add extra strain when they’re in trouble. Nor do you don’t want to darken joyous life events. Sharing begins to feel less a problem halved & more a problem spread.

Very few mental health problems are a simple fix. None of the big issues in life are that black & white. When you fall back into the grey it’s terrifying. Especially when you know you’ve already had your shot. Ask anyone who has tried to access mental health services after discharge. It’s almost impossible. Drs will say you aren’t sick enough for referral. The NHS lacks the resources for early intervention. Access to talk therapy is limited. Almost 40% of those who received treatment reported that they did not have sufficient sessions**. Cognitive Behavioural Therapy is by far the most frequently offered intervention. Not because it is the most suitable, but because it is the cheapest & easiest to administer. Recovery is hard enough with appropriate support. When treatment is bungled it can do more harm than good. As already stated, re referral is doubly hard.

While you wait or fight for professional help (that may never come) your life is disintegrating. Friends who were initially supportive fade away when you never quite get all the way better. Employers sprint. They’ll talk a good game; train a mental health first aider or make a donation. Test their commitment with sick time or requesting accommodations & watch them run. You are left with the people who care enough to stay. Your predicament remains. You don’t want to worry them. You don’t want to ruin anything or be the thing that tips their bad news scale. It’s never the right time. We all want to believe that catch phrases are enough, but buzzwords will never cut it. What happens after I say I’m not ok?

The truth is, more often than not, nothing. The pandemic has only increased strain on an already buckling system. I don’t have all the answers. I do know that a cute Instagram post during an awareness month isn’t it. We need huge institutional shifts. More money, more training, more oversight. Our political representatives need to know that we want action. 1 in 4 adults will experience mental illness in their lifetime. Telling them that’s ok isn’t enough. We have to be advocates.

If someone in your life is suffering without help you can contact your Mp & express your concern.

Find out how long waiting lists are in your area & ask you Mp what they’re doing about that.

Stop voting for people who are actively defunding our health service.

Be proactive. Ask loved ones what specific help you can provide.

Use your social media to contact politicians directly. Ask questions publicly. Embarrass those whose voting records go against their constituents interests.

Accompany a friend to appointments if they require support. Insist that interactions are recorded in medical records.

We have to demand more of ourselves and of those with the power to make changes. Truthfully, it doesn’t feel ok, not to be ok.

Open shouting mouth with the text your voice has power

* Information Services Scotland ** SAMH

Not to blame…

As this pandemic continues to wreak havoc there is an increasing need for a scapegoat. Predictably, fat people have become a convenient target. Navigating this strange new world is hard enough without all the finger pointing.

Magnified image of covid virus

If you’re feeling hounded, I get it. I’m fiercely fat positive & always prepared to fly the body liberation flag. Even I am finding the constant barrage of fat phobia exhausting. With our feckless PM giving credence to a BMI/Covid link and the tabloids eating it up it is understandable that we feel attacked. When the government makes weight stigma policy it absolutely feeds the trolls.

For the record, losing 5lbs will not make you less likely to contract covid nor will it effect the severity of the virus if you do. Like much of the Tories covid 19 response it is not rooted in science. In fact, it is too early for any studies to provide reliable data on the impact of covid on fat bodies. Especially when the intersections with poverty, disability, poor medical care etc are often not factored into research.

Fat phobic newspaper headlines

You are not irresponsible for living in a fat body. You are not a burden on the NHS. You are deserving of the same care & respect as anyone else. If you need help reinforcing these facts or dealing with others who refuse to accept them I highly recommend checking out the resources below. I have linked to their Instagram accounts from which you can find all their links/books.

Jess Campbell (haes_studentdoctor) is as her insta implies a student doctor with a Health at Every Size approach. She shares excellent information in a really straightforward manner.

Dr Natasha Larmie (fatdruk) is a GP in the UK who campaigns to end medical weight stigma. She shares her own experience along with insightful analysis. Definitely a must follow.

If you aren’t already aware of Dr Joshua Wolrich where have you been? He is an NHS surgical doctor who promotes HAES, debunks junk weight loss science & has a much anticipated book due very soon.

Lindo Bacon is a body liberation author, speaker & researcher. Their first book, Health at Every Size completely changed my understanding of how my body works & the effect of dieting. I cannot recommend their work enough.

Image of book,  health at every size lindo bacon

I only recently discovered HPWAS (Health Professionals Against Weight Stigma) and I am so glad. As a fat person it can be difficult to deal with the medical community. It is therefore very reassuring to know there are professionals trying to change things from within. They are currently collecting lived experiences of medical fat phobia. Please do consider sharing if you feel able.

Big fat love to everyone struggling.

We’re on each other’s teams…

On Thursday my Dr confirmed that she believes I have ‘Long Covid’. It’s been two & a half months since I tested positive and symptoms persist. It’s likely they will continue you to do so for some time.

My Gp took bloods and checked my vitals. My oxygen levels are a little low, but not worryingly so. My heart rate in the other hand is way too fast. We’ll need to keep an eye on that. The Dr is trying to get me referred to a covid rehab clinic, but in the meantime, there’s very little that can be done. At all stages of this illness drs have stressed that there is still so much that no one knows. New complications are cropping up all the time. The more complicated your medical history, the more complicated covid can be. For me it’s constant breathlessness and fatigue. All my usual chronic symptoms are heightened. My pain levels are through the roof, my appetite is decimated and when I do eat my digestive tract objects.

Ly is Weston big glasses and a feminist af face mask

Long term effects of the Covid 19 are far reaching. Everything from strokes to kidney failure has been reported. This virus is dangerous. Please take it seriously. I know the safety measures we have to take are hard. I hate spending so much time at home on my own. The emotional & financial toll has been huge for many, but we can’t afford to be reckless.

If you can, stay home. Wear a mask, wash your hands and observe social distancing rules. Everyone wants to be seeing loved ones & spreading merriment at this time of year, but it just isn’t safe. It will take time to get the vaccine out. Covid doesn’t care about Xmas. There will be more opportunities to celebrate. It won’t kill us to scale back festivities. It could kill people you love not to.

A mask in blue background with  text ‘wear a mask’

Not your pin up girl…

I recently received delightfully BoPo gifts that instantly inspired an idea. Since the presents in question are a hat & socks, they seemed perfect for a cute top to tail photo.

As I put my vision into action I became frustrated. My attempts to capture a simple, joyful picture of my fat body were complicated by the reaction I knew it would receive. No matter how carefully one covers provocative areas or unseductive the pose female presenting bodies are sexualised. Marginalised bodies receive even more pressure to up the sexy in order to be perceived as worthy of viewing.

Nudity isn’t inherently sexual on green and purple swirly background

As a fat woman I know from experience that any picture I put in the public domain will be insulted & ogled. No matter the context or reason for my showing the world the image I can predict a portion of the responses. Some creepy men will always make creepy remarks and fat phobic comments will appear. It can feel like I am being asked to either apologise for or eroticise my form to make it acceptable.

I’ll never apologise. I won’t forever play the sexy fatty either. My body is just as worthy as any other. I am attractive, I can be alluring. I’m also just a person. I like myself in jammies & unwashed bun. I like myself with hairy legs and tired eyes. I’m worthy when I’m limping along with my walking stick. I can find pleasure in my body just as it is.

Plus sizesd naked women sitting on floor one arm across her breasts and one leg crossed to cover pubic area.Wearing a hat & socks
Riots not Diets Beanie – The Spark Company
Socks – Crudely Drawn
Glasses – Where.light

Naked doesn’t equal sexual. All bodies are glorious and remarkable. I Iove the idea of embracing the normal. I want to celebrate all the different incarnations of me. I want others to see that they are enough.

When will they stop…

I used a hand sanitiser in a train station the other day. It was one of those super strong types that you find in hospitals. As soon as it hit my skin I was whisked back in time. For a second or two I was somewhere else. Somewhere I didn’t want to be.

The cold sensation drifted through my body. A zoetrope of mixed up images spun in my head. Blurry flashes conjured by the clinical scent. I felt dizzy. I sat down, took some deep breaths. It passed. I was grateful.

Blurry spinning image of trees & sky

It wasn’t entirely gone. That night the whirl of disjointed scenes dipped in & out of my dreams. Random words have jarred memories. My mind has wandered mid thought or conversation. I have felt the panic rising. Spells of forcing my head to connect with my physical reality have emerged. Struggling to focus on what I can actually see, hear, smell in this moment. Ignoring the feelings climbing my throat.

Tonight in the shower I couldn’t shake the feeling that the hot water streaming down my legs was blood. I couldn’t wipe the hospital aroma from my nostrils. Nor soothe the ache that spread from my back to my thighs. The hand sanitiser has triggered a reaction. My body is recalling the trauma stored deep within. It’s a phenomenon associated with PTSD known as body memories.

I haven’t experienced this symptom in quite some time. It lies dormant; rising unpredictably. Sometimes reacting to obvious & painful stimuli. Or, like this week, triggered by a tiny insignificant detail. My olfactory senses seem particularly attuned to old wounds.

New born baby feet with words birth trauma Association

This time it’s the initial loss. I feel my body failing. I know it isn’t happening. I have learned how to pull myself back to the here & now. Still, those moments when I’m dragged to the past feel completely real. I am not just thinking about unpleasant events. I am feeling them. My flesh & nerves & senses are reacting to something that happened 20 years ago.

Body memories are excruciating. It becomes a battle between what you know & what you feel. Fighting strong emotions is a challenge. When you add physical sensations grounding yourself is an onerous task. I have experienced these episodes replicating the sensations I felt during miscarriages & pregnancy. At times these physical memories are accompanied by flashbacks & other PTSD symptoms. Other times they occur in isolation. They mirror my actual experience so completely that I’ve found myself taking multiple pregnancy tests when I knew it was almost impossible for me to have conceived.

Sands logo

It’s another aspect of PTSD that I rarely see discussed in the mainstream. Post Traumatic Stress Disorder is not only (or even mainly) associated with combat trauma. Yet, it’s the link most people draw. The violent outbursts in media portrayals of the illness are not accurate. New studies are highlighting how prevalent PTSD is in women who have experienced baby loss & birth trauma. For most of us, managing PTSD is an internal process. Distress may leak out, but the grind is with yourself. Accessing the right help, surviving that help (trauma therapy can be brutal), learning to manage symptoms, accepting the parts you can never fix & the impact they will have on your life.

It’s painful & exhausting & many of us never completely recover. To stand any chance of healing specialised therapy is essential. There are so many barriers to reaching that help. It can take years to obtain any psychological intervention without the resources to pay privately. Even longer to receive the specialised therapy that can actually help. So many people can’t afford to wait.

This month I’m supporting The Birth Trauma Association and Sands. Both organisations support families who have experienced trauma surrounding baby loss & birth. Please join me if you can.

The Fear…

Spoonie life comes with many challenges. There are the obvious constrictions. Then there’s the hidden toll. The less apparent complications that pack a punch. It’s those tricky unseen issues that I want to talk about.

A major component of my chronic illness is anxiety. I have mental health issues which include anxiety, but my physical difficulties bring their own particular stresses. There’s the guilt; a feeling that’s perpetually nestling in the background of my consciousness. Guilt over letting people down, asking for help, using resources or saying no too many times. I have a million things to feel guilty about and every one of them has it’s own additional worries. I feel huge anxiety about cancelling anything due to illness. I worry people will be angry, upset, left in the lurch. I analyse every response and feel certain someone is annoyed. I overthink every request for help. Surely I can get this done without inconveniencing others. Am I asking too much? Always, always I worry that I’m just not worth all the extra effort.

Unfulfilled potential offers me unlimited scope for guilt. I am sure that I have disappointed. There are expectations that I have not met. Chronic illness has interrupted or ruled out so many things. I know my limitations have impacted more than me. I am haunted by the moments I may robbed folk of. To not live up to the hopes of those you respect is crushing. Not reaching your own is no party either. On an existential level it feels negligent not to maximise one’s talents. I spend more time than is reasonable worrying about all the ways in which I have short changed society. I am ashamed of all the things I cannot do.

Orange light is sunset shining in to a dark room

Shame looms large. Intellectually I know I cannot control any of my health issues. However, I’m not always great at translating that knowledge into feelings. I’m embarrassed about how little I can get done during the bad times. I often feel less capable, less valuable, just less. I stress about the judgements that will be passed. It’s very humbling to be unable to keep on top of all the housework. Likewise to have a head like a bird’s nest because your body just won’t allow you to shower & do your hair. I cringe at needing help to stand up. Wince every time I have to explain why I’m ordering a taxi to take me round the corner. Each unproductive day is a dent in the ego. It’s hard to feel worthy when writing two paragraphs & heating soup are a whole day’s accomplishments.

Then, some days you’ll wake up and feel relatively good. That should be lovely, but so often it’s tainted. Coloured with more guilt. How dare I enjoy myself when I’m supposed to be sick. Imposter syndrome creeps in. I start to feel if I can manage doing this nice thing I should be able to handle everything else. I feel bad for feeling good and I’m scared. I fear that I’ll be judged on my good days. I’m terrified that everyone else is thinking I should do better. When folk see me having a couple of glasses of wine with a friend do they think I must be fine? If I succeed professionally I’m convinced everyone believes I’m faking it. It’s such a difficult juxtaposition to live with; feeling terrible for all the things one cannot do whilst also believing the things you can will be held against you.

Yellow road sign with text, I’m scared my good days will be used against me

Even writing this is giving me anxiety. Will this be perceived as whiny? Or as me making excuses for myself. It’s not intended to be either. I just want to have honest conversations. Large aspects of the disabled/chronically ill experience are never acknowledged. Too often we’re judged or dismissed without ever having been listened to.

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.