Rainy days & Sundays…

Always get me down. Today is both. Although if I’m honest it doesn’t have to be either. There are days when I just wake up sad.

There’s no reason outside all the reasons that existed when I went to bed. No trigger, no resolution. Everything just feels pointless. If I burn a piece of toast I am utterly useless. If someone doesn’t call it’s because they hate me. Then I know I’m over reacting and I hate myself.

My thoughts get stuck in a loop of painful circumstances. All the things I cannot erase or redo. I inhale all the blame and forget to exhale the guilt. So, it lives somewhere inside me. Dormant, but never extinct.

Maybe tomorrow I will be ok. I’ll return to regular levels of coping and carry on. Or this woe will continue to spew. It could be weeks or months of life coated in depressive ash. I never know.

There is no cure; other than keep going. Hoping this eruption isn’t the big one. Putting faith in my ability to outrun the thought of diving right into the burning mess.

Next Sunday could bright. Or the one after that. There will be days to breeze through again. I just can’t feel it right now.

Dead roses in a vase and their shadow

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Dancing in the dark…

GlasGlow is back. We have taken the boy every year of his life, so this has become our own little Halloween tradition. This year was even better than last.

Blue neon lights blurring in rain
Large moon and coloured lights.

The boy was proper excited and dancing around; utterly adorable. It wasn’t too crowded and people paid attention to social distancing. The rain even almost went stopped for us. It was lovely.

Toddler running under neon rainbow
plus size woman in tartan coat with toddler in red duffle stunting infront of twinkly light wall

It was a bit of struggle for me to get around the park. Post covid I’m even less mobile. I found some places to sit and took periodic rests whilst the little man enjoyed the lights.

Pumpkins and giant glowing crystal in dark park
Two adult smiling women and toddler surrounded by lights

Much fun was had. Now I’m in recovery mode and jammies all weekend.

Build me up…

It’s been ‘ugh’ for a while now and I’m in danger of wallowing in a big puddle of woe is me. I’m making efforts to feel better. I started by tackling my inbox and then tried to clear some light housework. Ticks on my to do list helped me feel less useless. Now seems a good time to build on that by counting my blessings.

So, today I am grateful for,

My big comfy bed (& no one snoring, farting or otherwise bothering me in it).

My fridge holds soups & fruit juice galore. My stomach only wants these & the occasional bread product.

My demanding little purr ball.

Black & white cat with his eyes closed having his ears rubbed.

Excellent new Jim jams. They have pockets and are so soft I keep stroking myself.

Ly is taking mirror selfie. Smiling & wearing pink jammies

Hot running water.

The sick & ridiculous humour of the Small Town Murder podcast.

Small Town Murder podcast logo

A plethora of supportive & loving people.

All the perfect little ones said people have made.

The writings of Sara Pascoe & Barbara Trapido

Free and accessible healthcare. Big love, NHS.

Red love heart and NHS in white letters

The freedom to drift in and out of sleep as needed.

The phone steriliser relieving covid related iPhone anxiety.

Messages of love from my big muffin.

Text message with sad alien face

Lemon & lavender scented heat pads.

A room festooned with beautiful blooms.

Various bunches on flowers in vases. Sunflowers , roses, lilies, berries, gladioli

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Try not to breathe…

You’ll have to excuse my silence, I have not been feeling good. What I thought was a bad cold, progressed to maybe flu & a uti. Then my sense of smell disappeared and my tongue tasted disgusting. Fevers, unrelenting fatigue, one home test and I suspect you know where I’m at.

Corona town is no fun. I’m on day 15 and I still feel like shit. I have improved a little. I can now eat toast & drink fruit juice without my stomach violently objecting. On the other hand, my cough is getting worse again. I still ache all over and my joints are throbbing. I’m losing entire days to sleep, but remain exhausted. I have a constant low level headache that periodically ramps up to ow! I’m breathless all the damn time. And of course my usual complaints are all heightened. It feels bloody horrible.

I’m stumped on how I contracted corona. I have been careful. I hardly go out. I have seen only a small group of people since this began and always in accordance with the rules. I wear a mask. I’m hand sanitiser obsessed. No one has been in my house since March. Still I managed to catch it. This bug is not messing around.

I’m very grateful this isn’t worse. I have pre existing conditions & a pathetic immune system. I feared this virus might knock me out entirely. I’m glad to be managing at home, but trust me, you do not want this. Even the not so serious covid is plenty bad.

Please be extra careful. Take care of yourselves & everyone you may come into contact with. Normal is a long way off.

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.

Will you feel better…

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

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

Orange & pink neon foam roller

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

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

Blue body with spine lit up orange & red

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

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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.

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Darling, hold my hand…

Friday seems to have become my social hub. I’m still mostly pottering away at home. Shops & indoor pursuits still don’t feel safe, but I am down for a wee afternoon in the park.

Since the little ones no longer need to social distance my bestie & niece joined us for an adventure. We went to one of my favourite places & had a ball. It drizzled a little, but with highland cows, dinosaurs & fairies to find the rain did not dampen our spirits.

I paired up some striped staples with my new kimono and felt cute. The rain might not have spoilt our fun, but it did ruin my hair. Oh well, no one’s locks look tip top during a pandemic.

Skirt – Asos Curve
Vest – Primark
Kimono – Boohoo
Sandals – Next (kids)
Glasses – where.light
Both in need of trim.

Despite now being predictably sore all over, I regret nothing. These little rascals are irresistible & their Mummies aren’t bad either.

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You keep making me ill…

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

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

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

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

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

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

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

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

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Got the city on lockdown…

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

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

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

Thumb & forefinger  holding book open

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

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

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

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

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

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

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

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