Regular readers might have noticed the downturn in my long form content. There’s a very simple reason for that, chronic illness.
This year has been one thing after another. The last few months in particular have been gruelling. The problem with having chronic conditions is you often find yourself fire fighting. There are so many symptoms, it is impossible to properly deal with everything. You end up addressing the most problematic at any one time. Plus of course it can be hard to get Drs to really investigate many issues. Often they’ll just chalk up to an already diagnosed illness. Sometimes they’ll try to mitigate that symptom & others you are basically told you’ll have to live with it. I always have questions that aren’t answered. Unfortunately I run out of steam to pursue them. When you are always tired & in pain you must pick your battles.
Of course being fat complicates matters. The first response more is usually something about losing weight or questioning my diet. When I fight against that there will be what I call ‘subterfuge tests’. I’ve had more fasting bloods & cholesterol tests than anyone ever needs. After years of Drs refusing to believe anything I tell them, I find it is easier to just go for the bloods & prove myself right.
The last few months have been relentlessly hard. Pain has been consistently more severe. Digestive tract refuses to behave. I’m fainting daily. I’ve had the worst bout of insomnia of recent years, but even when my body eventually gives into the exhaustion; I awake feeling just as tired. Brain fog has punctured my old articulacy. I struggle for words in everyday conversation. I have lists & notes for every little thing. If it isn’t written down, it will never happen. My skin itches, my head hurts, alarming bunches of hair are falling out, I’m breathless, nauseous & anxious. ALL THE TIME.
I have suspected that something was going for a while. I can’t explain except to say that my body didn’t feel like it belonged to me. These ailments have been breaching my outer limits. So, I had some blood tests that revealed elevated numbers. My Gp wanted to test again a few weeks later to rule out a random blip. They came back slightly higher. A new medical mystery was born.
The high numbers are related to my liver function. There isn’t an obvious reason for my liver to be pissed off. I hardly ever drink alcohol, I don’t eat meat or dairy, no signs of diabetes. It doesn’t make much sense. Possible culprits include my missing gallbladder & bile duct complications, covid & no doubt my weight will become a factor too. I await scans & next steps.
All this to say, I am currently operating on a wing & prayer. And I’m not even religious.
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It has been a week. Sometimes this chronic illness business is depressingly predictable. Others it throws you a delightfully new problem. The past week has combined both. Lucky me.
Let’s start with the spoonie admin. Apparently because I have Pots the airline requires proof from a Dr that I am fit to fly. I am fit to fly. I flew last year with no issues. I don’t require oxygen and I can follow the safety instructions should the worst happen. None of which makes any difference to the airline people. This letter has to be signed no more than 30 days before departure. Months ago I made an appointment and explained what it was for. So, imagine my surprise when I turned up at the prearranged time only to be told that their policies have changed; my GP surgery can no longer provide this service. They suggested I contact a private clinic. Since I would dearly like to go on my long awaited holiday, I did just that. After quite a few no can dos, I found a practice who could help. Huge sigh of relief. Right up until they emailed the cost. Oh, what I would give for a body that behaves.
The week then steered into familiar territory. A night of unmanageable pain culminating in a disastrous faint. My glasses were knocked off & one lens shattered in the fall. I of course landed face first in the mess, then proceeded to repeat the passing out & smash my head. Cue a day of blood tests, butterfly stitches and feeling appalling. Oh and obviously more cancelled plans.
I tire of discovering new hurdles and stumbling over the old ones. The week ahead will be mostly conducted from the safety of home. I intend to sit still, get some writing done and try very hard not to be so much trouble. Health is wealth in more ways than one. Bronan is relying on me to keep him in the luxury he is accustomed to.
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Christmas is a funny old time. We’re all feeling sentimental and emotions are heightened. I struggled a little this year, but still had a beautiful Christmas Day.
I got all dressed up for Christmas with family & friends. We had lots of food, presents & excited children. I feel loved & grateful for having such wonderful people in my life. Especially that I am blessed with so many niblings to adore. I’m equally thankful that I can spend the post festivity stretch ensconced in jammies & cosy socks.
I know this time of year can be hard for a multitude of reasons. Xmas is all about children and I find myself dwelling on how different my life could be. There are so many reminders of what I have lost. If these past weeks have been arduous, I hope you were able to have as merry a time as possible. If merry is a stretch, then I wish you peace & a better new year.
One of my nephew’s made his debut in The Nativity last week. It was a good excuse to put something pretty on. There’s been a lot of feeling rotten & looking worse. It was time turn it up.
Christmas time always mean velvet to me. Obviously, singing children called for double velvet. Throw a little leopard print in the mix and you have the ultimate festive auntie outfit.
Trousers – Elvi Blazer – Monsoon
Blur primer & concealer worked miracles on my face. It has sustained a few bashes amidst my fainting escapades. Big glasses & lashes of mascara saved the day.
Glasses – Where Light
The nativity was amazing. My nephew’s Joseph was superb & I was a very proud auntie. We rounded off the occasion with a some Xmas operation & classic Disney cartoons. Good day!
Christmas is a time for giving. However, given the current economic state it’s understandable that more people than ever are unable to be as charitable as they’d like. Thus, I thought I’d offer some easy (& free) ways to help
Give Your Best is a tech for good enterprise that allows people to donate quality clothes. Clothes are shown on their website and can be shopped by those in need. The organisation supports people in the UK who are seeking asylum, refuge, have been victims of trafficking, destitute with no recourse to public funds or have precarious immigration status. The platform accepts donation of clothes, shoes & accessories and allows people to pick the items they want at no charge. It’s a simple system that engenders choice. If you have items that would be of use to someone please sign up in the website.
Smalls for All accepts donations of new pants and new or gently used underwear. They work with various organisations who disturb the items throughout the UK & Africa. Pants can be picked up so cheaply & if you’re anything like me you will have bras that you wore once and found it didn’t fit properly or didn’t give you the shape you wanted. Small for All facilitates getting those garments to people who need them.
Many charities can raise funds by recycling used stamps. All you have to do is cut them from the envelopes they arrive in and send to any of the following organisations.
Finally is you are able giving blood is an amazing way to help others. As a recipient I am eternally grateful to the people who donated the blood I needed. Uk blood stocks have been alarmingly low this year. Although they are now recovering, blood donors are always needed. You can find out if your are eligible & how to donate here.
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 own 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.
If you enjoy my writing you can support me here or on Patreon.
Something in the way she moves... 
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