October is Breast Cancer Awareness Month. I know there are lots of campaigns at the moment, but I want to suggest a less discussed group. METUPUK are a patient advocacy group who push to promote issues related to secondary/metastatic cancer.
In the UK 31 women a day die from secondary breast cancer. Despite this secondary cancers are often less visible. People living with secondary cancer need better drug access, more drug trials and more awareness.
I was shocked when I learned that figure. I discovered it through an Instagram friend, who is living with secondary cancer. The lack of knowledge about a disease that effects so many people is appalling. Please consider making a donation if you can.
doing not much. It’s been mostly sedentary activities and background music has been essential. These have been my most played.
Obviously Lewis Capaldi’s new song has been on repeat. Like the rest of the sane population I have been dying for him to release new music. Forget Me doesn’t disappoint. Poignant lyrics and epic remake of a wham video clearly add up to a hit. I even bought the single. The first single I have purchased since the 90’s. It must be good. Factor in the bonus of having him back of social media and the world is a better place.
Reflecting Light wormed it’s way into my play list via Gilmore Girls. I’m currently very annoyed at that stupid show. I started it in a fit of insomnia because a friend told me it was great (you know who you are!). Gilmore Girls is not amazing. It is a sort of ok sitcom with a few really annoying characters and main folk doing occasionally hideous things. I couldn’t stop watching, though because they suckered me in with Lorelai & Luke. I can resist a meant for each other but keep fucking couple. Thus, I had to press on to ensure they ended up together. Amongst my tears & frustration came Sam Phillips singing Reflecting Light.
‘ I rode the pain down, got off and looked up Looked into your eyes The lost open windows, all around My dark heart lit up the skies’
The waltzing and those lines got me. I’ve been humming it all week.
Another Love by Tom Odell is the song you hear in the videos of Iranian protests. An uprising prompted by the death of Mahsa Amini, a 22 yr old woman beaten to death by morality police for not wearing a hijab. The courage of women refusing to submit to these laws is immense. It is incredible to watch people stand up to this totalitarian regime. Their bravery is awe inspiring. I get shivers every time I get this song.
Last but not least we have Harry Styles’ Matilda. It’s just such a beautifully sad song. I can’t relate, my family are wonderful, it’s still making me cry. Something about that reassuring voice saying it’s ok to let go just gets me. Poor Matilda.
Bronan approves of both the tunes and the sitting still.
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Today came around very fast this year. It frightens me how much time has past. You’d be older than I was when I carried you now. That feels incomprehensible. All those missed years. A grown man’s worth of memories. I can picture you at every age. Yet, I still call you baby.
We’re trapped together in this restless limbo. I hope it’s easier on your side. I dream of you kicking. Always the same sensation. Never the same place. We’ve travelled my emotional map together. You have been everywhere that ever really mattered. I wish I could give you more than words & dreams. I’m sorry I couldn’t save you.
This month I decided to support Animals Asia. As the name suggests the work to improve the life of abused animals in Asia.
I’m a life long animal lover. I have always been involved in animal rights activism in whatever capacity I am able. When I read about the plight of bears in bile farms I was simultaneously heartbroken & enraged. After further reading I discovered that Animals Asia also fight for the welfare of cats & dogs in China and captive animals across Asia.
No animal should spend their life in a cage. Be ripped from their mother at birth. Endure pain & suffering for their entire existence. Animals are intelligent, sensitive creatures who deserve so much more than they are subjected to for human profit.
You can help them run their sanctuaries and ensure the welfare of countless animals. If you can, please consider making a donate.
I got an email from photobucket. Actually, I got several that I had ignore because I had more pressing issues. I should have continued pressing because opening the 12th email and clicking that link was a mistake.
Amongst page after page of self harm photos I found pictures of a girl I don’t fully remember. I don’t know why I say a girl, I was a woman. I seem more like a lost girl, though. I look like someone who wants to disappear. I was someone in the process of vanishing. Looking at those photos hurt. It’s painful to see how desperately Ill and unhappy I was. Even more agonising to realise how much the world approves of that version of me. A person who hated themselves so much they wouldn’t eat properly & spilling their blood felt reasonable. But hey, look how I thin I was.
I lost ridiculous amounts of weight in a very short time. I started with what I believed to be a very reasonable calorie restriction. A nice round number that I saw in magazines & tv shows. The weight came off quickly. People around me were pleased. I enjoyed the positive reinforcement. Everything else in my life was a disaster, I liked doing something that everyone was happy about. I also liked my discipline; how strict I could be. I began to relish the hunger pangs and how good I was at ignoring them. When the weight loss slowed I reduced the calories. I limited how many each meal could contain. I couldn’t eat before or after certain times. I filled up on Diet Coke. I had ‘fast’ days and just eat veg days. Rules piled up and weight fell off.
I did this more than once. The weight loss was never maintainable. Each time I started again I believed I would just follow a ‘healthy’ diet. Every attempt at lifestyle change descended into extreme behaviour. The only people who questioned this were the few who’d had their own food issues. I assured them I was ok. This weight loss was good for me. I wasn’t doing anything crazy, in fact I felt so much healthier. I’m sure the believed (or almost did) me because I didn’t think I was lying. I honestly thought the means justified the ends. Being fat was horrible. I was disgusting, I ate too much and it was terrible for me. Having some restraint was improving my body inside and out. I knew I was fudging the details a little, but I really didn’t think I was doing anything dangerous. I did eat. I very rarely threw up. The things left in my diet were all ‘good’ foods. The congratulations rolled in. Besides, I wasn’t even very thin.
I don’t even blame the people who did all the high fiving. They knew I had been unhappy with my bigger body. Those close to me knew how appalling my mental health was. It looked to the outside world like I was doing something good for myself. I seemed more confident, more at peace with my body. Of course we all live in diet culture. Thinner bodies are better. I understand why my weight loss was something to celebrate.
The professionals are another story. They should have known better. I was so very Ill. I was in regular contact with all manner of Drs. My self harm was out of control. I was getting stitched up multiple times a week. The blood loss was wreaking havoc. I had angina attacks, constantly passed out. No sooner was a blood transfusion in than I was working on getting it back out. I had already started to experience the problems that led to pancreatitis. They watched my weight rapidly drop. Climb back up. Then fall off again. Not a single medical professional ever thought to question that. They were the opposite of worried. I was praised. They loved seeing the change on the scale. I was explicitly told how good this shrinking was for me. I didn’t even lie about how I was doing it. I’d joke with nurses about ‘just not eating’. I explained my calorie restrictions and the extent of my diet to Drs. It was all excellent. Keep up the good work. Well, done you!
Even the mental health teams I was working with didn’t raise any alarms. We only ever talked about my weight loss in positive terms. They were glad it was helping my self esteem. There was never any in depth conversation about how I really felt, what I was doing or why. There should have been. They knew my history and my problems. There are so many links between self harm & disordered eating. Control being the most obvious. The triggers for the behaviours can be the same; shame, self hatred, feeling a failure, punishment. They can achieve similar results like a feeling of release or a sense of achievement. My self harm was compulsive and so was the weight loss. I was atoning and deleting the parts of me I despised. The only real difference between the two was how acceptable it was to want to be thin.
As I write this I recognise all the signs of an eating disorder. Yet I cannot accept that diagnosis fits. I can admit I had an unhealthy relationship with food. I know I used extreme methods to lose weight, but disordered eating is as far as I can allow myself to go. Intellectually I know why. I was never dangerously thin. In the midst of it I didn’t ever believe I was thin at all. Those old pictures were shocking because I have no recollection of being as slim as that person. I began my diets fat. Eventually I always returned to fat. That’s why no one ever considered an ED a possibility. It remains why I could never accept the label. For all my learning and activism there is an internalised fat phobia that I’m not sure I will ever shake.
I have compassion for my former self. I am angry at the people who should have helped me. I am happier in my fat body than I ever could have dreamed of in my dieting days. I don’t want to go back. Nor do I want to be smaller. I do however still hold this feeling that I have no right to talk about myself in certain ways. I feel fake. Despite knowing all that I know, I still can’t change the feeling that it wasn’t bad enough for an official title.
That realisation is painful. It hurts to know that nothing has really changed. There are people in the same situation right now. The medical community is still exceptionally fat phobic. If you are fat, disordered eating is encouraged. Prescribed, even. We’re still insisting people fall below a certain BMI before they can be referred for treatment. The fact that Drs are even using BMI is in itself horrendous. People are hurting themselves and the world loves it.
This is why body liberation is essential. It is so much deeper than loving one’s body. Weight stigma is systemic. Built right into the places we are supposed to turn to for help. Fat phobia is in us all. It is insidious and deadly. We all deserve better.
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It’s been a very hard month(?). Hard to be sure how long because my brain is utterly scrambled. In any case, there has been a lot of medical bullshit and I have not been taking care of business. I have been indulging in therapeutical level loud music, these are the songs that have been on repeat.
I Do This All The Time
Since seeing Self Esteem at Trnsmt. I have been a tiny bit obsessed with this song. Self Esteem is awesome in general, but this song really hit home. Its a cool uplifting anthem, with a ‘you got this’ message. This song has summer has hit written all over it. I suspect its success might be in part because of how well Self Esteem understands her audience. The lyrics really get into the thoughts and concerns of so many women. Our tendency to believe we’re not making the right choices, picking the right people or being good enough at all. Some of these lyrics felt like they were written just for me, especially the ‘you’re a stocky girl’ & ‘it was really rather miserable trying to love you’ lines. It is reassuring to hear someone get that and dispel it all in one upbeat banger. You didn’t think you’d live this long sun happily will get me every time.
I Am Not Ready
I discovered Olivia Broadfield via The Split. This soundtrack made the series even more heartbreaking. She is a lyrical genius. I feel these words in my bones. I am a sucker for a sad song and this entire album is perfect. I Am Not Ready works for either grieving someone who has died or lost relationship sense. Oh man, if you’ve experienced either, this one cuts deep. Broadfield’s beautiful voice begging to know if it ever gets easier is a killer. Let’s face it, we’re never ready to say goodbye to the people we want to keep.
I can’t even remember where I heard this song. I don’t know anything about Beach Bunny nor have I checked out their other music yet. I just find joy in this song. It’s a dreamy, lovey dovey, summer tune. It makes me smile when I’m stuck in a stifling waiting room. That’s good enough for me.
Worry Bout You
I found Kendra Celise on Tik Tik. She is a singer/songwriter with a kick arse country vibe. She was inspired to write this song after a phone call from her ex husband’s new girlfriend. I have to say I think this is the coolest way to deal with some daft bitch bothering you. Her lyrics are clever and this song is so good when it’s blasting all through the house.
Bronan isn’t always as delighted with my loud choices, but he does always forgive me.
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In a previous post I discussed some developments with my long covid debacle. I had to wait a while to see a specialist and have some tests done, but I am now closer to a diagnosis. I will speak on that later as I have two more tests to under go before that is finalised.
I am feeling deflated. My appointment this week didn’t hold any surprises, but there weren’t answers either. The consultant couldn’t give me any opinion on whether my current symptoms would improve or resolve. She also didn’t have any suggestions to improve symptoms that I am not already doing. Drs still have a lot of ‘don’t knows’ when it comes to long covid. That’s not anyone’s fault, but it is incredibly difficult to deal with. As I have said before, the thought of being stuck in my current condition is terrifying.
I am trapped within by body’s limitations. I feel useless and unreliable. In the last two weeks I have had to miss a funeral, reschedule medical appointments & cancel just hanging out at my friend’s house because I was too ill to get out of the house. I can’t keep up with housework or actual work. I am almost always saying no. When I see my niblings I can’t play the way I want to. I can’t help out my Mum friends/family the way I want to and used to. I can’t visit friends I haven’t seen since pre pandemic because the night before I am due to go I end up in hospital. Any outing I can make I constantly interrupt with my need to rest. People always have to ask if I am ok, if I can manage and so on. I hate it. I don’t want the people I love to be worried about me all the time. I make everything harder for everyone.
For me this is failing on all fronts. I’m not doing anything well. Doing everything that has been suggested to help and having no improvement is so dispiriting. Gentle exercise might help, but too much will exacerbate symptoms. I struggle to do 5 mins of gentle yoga stretches without getting so dizzy I pass out. Swimming is great, but I’ve been advised not to go alone. I’ve doubled my fluid intake. I’m resting and doing all the recommended exercises when I am sat down. I stand up slowly, clench muscles and don’t stay in the same position too long. I’ve gone for every test and treatment. I’m utilising every trick in my pain relief deck. I’ve cut back, more rest days, meditate, take deep breaths. Nothing works. My pain levels have not reduced. Dizziness & fainting will not abate. My heart continues to race and I can never get a breath. The brain fog is the worst I have ever experienced. No one has any other help to offer me.
I don’t know how to adapt to this. It is very hard to see how I live a fulfilling life in this state. I know I have felt this way before and found a way, but my horizons keep shrinking. Hopefully it will get better or I will rise to the challenge. Right at this moment I don’t know how to do that. I am more stuck than I have ever been.
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I am attempting to have a rest day, but my head is doing the anxious ‘doing nothing is not ok’ thing. So, in attempt to both rest my body and ease my mind I thought I’d do one of silly little blog rants. Come along if you fancy a vent.
Oh I know they have job a to do, but why do they need to be so troublesome? They always want to be making an appearance when I want them hidden. Constantly busying themselves with getting clogged. Try to take care of your skin with spf or a nice deep moisturiser and they will suck it up & make a big blemish. I just want soft smooth skin. Why must my pores always try to ruin it?
They’re all about ghost or too disturbing to watch. Where are all the good old fashioned crazy killer films? Or even a well made creepy monster would do. Maybe I am just old, but it feels like the only scary movies I enjoy are from the 90’s. Is this how it starts? One day pop culture is annoying me and then next I’m saying ‘in my day’ to kids on the bus? Oh god, I hope not.
I’m always complaining about this. However, this week I’m pissed off about a particular kind of fat phobia. If you’ve seen that Tik Tok clip of Bethenny Frankel saying she hates plus sizes, you might get what I’m on about. She’s not saying she hates that brands are making xl, xxl and so on. What disturbs her is what they’re named. Why can’t we name them something nicer, she posits while entirely missing the point. The issue isn’t that fat people clothes come in extra, extra large; the problem is the that people still shy away from those terms. Large isn’t bad. Super large isn’t bad. No one is suggesting we find a cuter name for XS. Continuing in the belief that accepting fat people are fat is hurtful is not ‘body positive’. It’s just entrenching the stigma. Our bodies are bigger and that is ok. Everyone can see that I’m fat whether my label says 2xl or ‘bad bitch’. I will face the same stigma & barriers regardless. The point is, the size on your clothes doesn’t matter. It gives no information about a person other than the circumference of body parts. You’re not a fat ally of you don’t understand that.
Not all of them obviously. Just the ones who think is it Tinder. Every day I get messages from men I do not know who think I exist for them to chat up. Or worse send repulsive, grammatically incorrect filth to. I honestly do not understand why they think it is ok. Nor why they think any woman is going to respond positively. There are sites designed for that shit. If you want to meet someone to date, download a dating app. The folk on there are interested in getting to know strangers. If you want to exchange explicit messages there are sites for that too. Having an Instagram account is not an invitation for any random man to crawl into my dm’s. If I don’t know you, leave me alone!
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I have had a week full of duplicated bank transactions, leaking ceilings, insanely high vets bills & other stressy issues. All of which have impacted my creative flow. So, I thought I would treat you to a little of my old poetry.
Regular service will resume soon.
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It’s been a while since I did a week in pictures. Mainly because I have not been doing anything all that exciting. I have had a few family dos of late, so I’m doing a share.
First up was my youngest nibling’s first birthday party. The first year of these baba’s life has gone at lightening speed. They have been an absolute delight from day one and continue to be wee darlings. They are now very much on the move, starting to find words and full of fun. Their party was lovely. The babies enjoyed their new toys, grown ups enjoyed a cuddle and bigger kids loved running riot.
Following on the family fun theme I had a gorgeous Easter lunch with my Mum, Sister & her boys. My sis made a superhero afternoon tea with plenty of vegan friendly options for me. The boy opened some Easter gifts and then we set off to his swing park for a bit of carry on.
After all that activity, I required a wee bit of rest. I had a quiet few days at home. Wore my comfies, tried to finish some work and painted my nails. I also had some yummy comfort food & bought Bronan some new catnip, which went down well. Strangely it also increased his paper fascination.
Thursday brought some Auntie time. My sister needed me to watch the boy for a few hours in the morning. This worked out perfectly as it gave him an opportunity to try out the blocks that Geomag* kindly sent me. I had intended to get a few of my littles to try them out, but this boy fell in love with them. He played all morning, took them home to play all afternoon too. The Magicubes are magnetic blocks that connect and hold on all six sides, meaning kids can build anything with them. I’ll definitely be buying more for the rest of my nibling gang.
I finished off the week with blood boost. A transfusion can be a nuisance, but necessary. Ultimately I am very grateful to have access to the medical care I need. Plus it gives you a good excuse to stay still and listen to a podcast all afternoon. I came home to huffy cat (annoyed that his dinner was late) & a lovely sunset. Not the wildest Friday night, but I’ll take it.