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.

A day in the life…

This morning I was rudely awakened at about 3am. The ill mannered culprit was pain. This time it was intense & centred in my stomach. So, i got up, took my stomach meds, some painkillers & hoped for relief.

Relief was not to come. I lay in the dark for half an hour waiting for the medication to work it’s magic. My body was having none of it, a wave of nausea washed over me & I knew I was going to be sick. I ‘rushed’ to the bathroom where I proceeded to vomit repeatedly. Each violent wretch sent pain shooting down my back. An hour later I’m sweating, dizzy, sore & unable to get off the bathroom floor.

All the throwing up had triggered some hefty heartburn & reflux, but meds weren’t  an option for fear of kicking off more vomiting. I slowly picked myself off the floor & retreated to the living room. Once situated on the sofa, I turned out the lights & put Joni Mitchell on low.  Over the next several hours,

I tried breathing exercises,

put on my tens, 

paced, 

drank mint tea,

curled into ball,

took more medication, 

vommed more medication 

watched the sun come up

& resigned myself to having a rough day. 

That’s exactly what happened. Today was a riot of pain. My stomach continued to be a nightmare. My back ache progressed into agony. I was intermittently sick throughout the day. Thus I had to cancel appointments. Most of the writing scheduled for today wasn’t even attempted. More housework piled up as I struggled to control my pain & rising panic. An acute flare like is this stressful because I never have any idea how long it might last. I could be in better shape tomorrow or I could be in hospital. I live alone & I work freelance; if I don’t do it, it doesn’t get done. I worry. A lot. I grow concerned about 

staying solvent, 

my professional reputation,

keeping my home presentable,

keeping myself presentable,

how I will keep important appointments,

letting my loved ones down, 

losing control of my mental health, 

Basically, I worry about everything, from the state of my kitchen floor to the state of my relationship. Of course all this stress is detrimental to my health. Especially with regards my to stomach problems, stress is the enemy. Likewise, stress is an anathema to sleep. Lack of sleep makes illness more difficult to cope with, but of course pain & illness also make it harder to sleep. If I can’t manage my anxiety it will spiral into panic attacks & depression. Any decline in my mental health reduces my productivity, my ability to leave the house & my chances at engaging with the world positively. Around & around I go. Symptoms exacerbate symptoms all adding up to an almost permanantly exhausted, scared, sick & sore me. 

And this is my life. This level of illness is not rare. My good days are not pain free. I don’t know when the bad times will hit. I wake up every morning with no idea if I’ll be able to get out of bed. Chronic illness is fucking nightmare. It forces you let people down, to miss huge chunks of your own life & to live that life always walking on broken glass.  

Don’t patronise me…

I’m struggling to sleep tonight. My  pain got a little out of control last week & so my dr upped one of my pain meds. It was quite a big leap & my body hasn’t been behaving since.  My mood hasn’t really been behaving either. It took a dive earlier in the week for, I imagine, a combination of reasons. Perhaps feeling so bizarre, or the pain or an upcoming anniversary. Who can say?

On account of the above there have been days when even getting out of bed has been difficult. Yesterday was one those days, everything hurt & I was very foggy from the meds, but things had to be done. Bronan had to be fed. I had to return some important calls & I had to put my bin out to be emptied.  Dragging myself out of bed was a struggle, but I did it. So, up I got, flung on whatever clothes were lying on the bedroom floor, brushed my teeth & completed those tasks as best as I could. I did these not because they would lift my mood. Nor did I do them as part of an ‘action plan’. I didn’t derive any sense of achievement. They needed to be done, so I did them.


Later, I tried to write, but couldn’t concentrate for more than a minute or two. It occurred to me that I hadn’t eaten all day & perhaps something in my stomach might counteract the effect of my medications. My fridge contained some broccoli that had to be used today or it would only be fit for the bin. So, I steamed that broccoli in the micro, poured some boiling water on noodles & flung soy sauce over both. I didn’t cook because it would make me feel that I was worth taking care of. I simply used the ingredients available to feed myself in the quickest manner because otherwise, I would not eat.

I tell you these things not because they are interesting. I certainly don’t mention them because I want applause. I merely draw your attention to these mundane activities as they are the reality of day to day life.
THEY ARE NOT SELF CARE.
Mental health organisations & increasingly, just anyone are constantly spouting the merits of self-care. I am so tired of hearing this bullshit. Everything I do does not have a therapeutic purpose. Mental illness (or for that matter physical) does not define me. I am a single woman living alone. There are always tasks that need taken care of. I take each day as it comes & do as much as I can manage. That’s just survival. In that respect I am no different from anyone else. Obviously my illness can make simple jobs difficult. Things the average person may take for granted come harder to me. That doesn’t change the nature of life. I either keep living to the best of my ability or I lie down and die.

To label each chore or treat self-care is to rob me of my basic humanity. I am no longer a person, but a collection of diagnoses’. Illness becomes my defining feature. I strenuously reject that characterisation. To measure my wellbeing by how many dishes are in my sink is insulting. Similarly, to minimise serious conditions by suggesting a nice dinner will make it all better is also offensive. A cute badge with a star & I took my meds or A childish phrase is not going to brighten my day. 

I live my life as fully as possibly. I enjoy whatever I can and try my best to endure the rest. Doesn’t that sum up most people’s experience? I don’t hear anyone congratulating ‘non-mentals’ or ‘non-spoonies ‘ for continuing to exist, so why are they patronising me?

If my thoughts on this offend you, then just imagine how I feel when several times each day I am confronted with the cult of self care. If it works for you, cool, you do you. However, don’t suggest I have a bath with candles to get over terrifying flashbacks. Don’t tell me to give myself a wee treat to combat searing pain. Most of all don’t belittle me by suggesting my daily drive to survive is ‘self care’. Keep it to yourself, darling or prepare for my wrath. 

The mirror has two faces…

Yesterday I performed a fairly miraculous transformation. I was so impressed with myself that I felt the need to share my handy work. 

I posted the above on Facebook with the caption, left to right & out the door in 40 mins. All of which is true, but there’s so much more I didn’t say. 

What I didn’t mention was how I felt. My head was wobbly yesterday. I am titrating Pregabalin slowly up to recommended dose. This is an issue because every time I up the doseage the side effects come back. Hence, my brain was not that sharp. Along with that my anxiety was troubling me. The thought of going out alone was frightening. I was of course sore; my back & feet are a constant source of pain at the moment. So, basically what I’m saying is the first picture is an accurate representation of how I felt as well as how I looked. 

I worried and procastinated for so long that I only had 40 mins to get ready. I forced myself out the door with the aid of diazepam, earphones & big sunglasses. I still felt exposed. I dreaded anyone talking to me or even getting standing too close. I got lucky with an almost entirely empty bus, but my heart was still pounding as loud as the music in my ears for the entire journey. At every stop I had to force myself not to get off & go home. Every bump in road sent a shudder of pain up my back. I persisted because I’d really like to have a real life. 


I met a dear friend who I feel completely safe with. We had a drinks & I managed to relax to level where I could enjoy myself. The weather was lovely, the company excellent & I passed for an attractive human being. 

I’m smiling in this picture because I was having a lovely time. I was still in pain. I’m always in pain. I say that not for pity, but as a fact. For my one evening’s entertainment I’ll probably require two days of rest. Today I am suffering. 


My point is that invisible illnesses are often attacked as not genuine & the weapon used can be anything sufferers manage to do. 

You can’t be that ill if you can work.

You can’t be so ill if you can go out.

You can’t be in pain if you excerise.

You can’t be depressed if you can put make up on.

And on & on & on.

I’m offering myself as an example. Some days are good, but I never feel ‘normal’. There is always pain & anxiety. There are nightmares & flashbacks & urges to butcher my flesh. There are days when I can’t get out of bed & nights of no sleep at all. It’s shit to have to push & push to accomplish everything. We (spoonies) have no alternative, if we want to build a fulfilling life, we have to fight. Wether we’re fighting to wash some dishes or to have some fun with friends we don’t need judgmental bullshit to add to our burden. 
Your reward for reading me venting my frustrations is the cutest cat in the world.

All things must pass….

Last week I finally got an appointment with the pain specialist I have been waiting see. I had pinned my hopes on this Dr having some answers for me. He did. Unfortunately it wasn’t a diagnosis I wanted. 

My new consultant is convinced that I have Fibromyalgia.  As you may know I have been living with chronic illness for some time. I have a number of debilitating digestive tract issues. I also have problems maintaining a healthy haemoglobin level, which causes a raft of symptoms ranging from fatigue to angina attacks. Along with these known conditions I have increasingly had mystery symptoms. Pains with no definable cause, intensification of pain resulting from my health issues, continual sleep disturbance despite taking really quite strong sleeping pills, confusion , memory loss & needing to pee constantly. Add that to my existing physical symptoms & PTSD and you begin to get picture of what I’m dealing with. 

Pain in particular has been taking over my life. It limits almost everything. I can’t make plans, my social life has contracted & working outside the home is impossible. Even keeping up with housework is a mammoth task. I needed help. I was clinging to the idea that someone would find a problem that could be fixed. That I’d be offered surgery or medication of some crazy treatment, at the end of which I would reclaim some of my life. I knew that my diagnosed problems wouldn’t go away, but I held out hope that these newer cryptic concerns would be cured. Sadly, that is not to be. 

There is some relief in having someone say this is what’s wrong with you. I am glad not to have been patronised or had my mental health blamed again. I just wish the outlook was a bit sunnier. Since Thursday I have been adjusting to the fact that my pain is never going away. My current condition is likely to be my continuous one. I’ve had to read up on fibromyalgia & prepare myself for all it may mean. I have also been confronted with the new knowledge that pregnancy, which was never going to be straightforward is hugely impacted by fibro. This has been a big blow. I’ve wanted to be pregnant for a very long time. Knowing that I will most likely struggle to enjoy the experience is a punch in the gut. 

So, accepting this new diagnosis is a process. However, I am by no means defeated. I will start a new medication tomorrow. It’s likely to be a rough ride as it is harsh on the stomach, but the pain relief it can offer is worth trying for. I’ve already been referred to various groups & medical professionals. I’m doing my own research; I am open to anything. Expect to join me on a journey of experimentation with pain management techniques. 

I refuse to be beaten by this. Which is not to say I won’t bitch or wallow sometimes. I’m not superwoman. I accept my body will always place limitations on me. I also acknowledge that I am nowhere near to being at peace with that. I’m angry and sad, but not defeated. I have a very clear picture of the things I need to be happy. It’s just a case of working out how to achieve them within the confines of my illness. Let’s face it, I’ve been playing with a bad hand for a while, but I can bluff my way to a win.