25 Years

 

Pizza is my go to when I am too ill to put a meal together -
 I have had a rough time with the FND / migraine the last 2 and 1/2 weeks.

Video of me in 2012 ish having an FND non epileptic seizure, dystopia and paralysis episodes. https://vm.tiktok.com/ZNdjReGf1/

***TRIGGER WARNING*** Medical and other Trauma, symptoms and seizures in the video and post.

This… may be a long one and may be broken up over several posts. I will likely be doing more TikToks on it too.

For those who are new here, I have several medical issues, such as Chronic Fatigue Syndrome, Fibromyalgia, Otosclerosis, Migraines, Autism & ADHD. I also have a condition known as Functional Neurological Disorder, which was previously known as Disassociative Disorder, and also a type of Conversion Disorder. Unfortunately due to outdated information and the general disdain that can come towards disabled people, it is often touted incorrectly as a “its all in your head” mental health issue, rather than what it is, a complex, neurological, psychological, physiological condition. 

I learnt a lot about the condition from www.neurosymptoms.org.

At the time of writing this I have had FND for about 25 years. I am seeing a neurologist in June to get a proper assessment and diagnosis, and hopefully the correct treatment plan to help manage and hopefully improve my symptoms. 

I also can pinpoint its cause as trauma from the abusive relationship I had with Chris. My first symptom in hindsight I realise now was the functional tremor I developed in my right hand, I noticed my hand was shaking one day when I was helping my Dad when he worked at a company called Baltic Pine, I was sorting out leaflets into trays on shelves and I saw my hand was shaking. I was in my early 20’s at the time, and I had been in a relationship with Chris since I was 18 - and through some drama already in that time. When I saw a GP about it I was diagnosed with benign essential tremor, and over time it progressed to my left hand to a lesser degree. I then also developed the tremor in my upper body, and head, but it would be on and off. I had no idea until more recently that the tremor was part of the FND which would later come on as my first paralysis episode, whilst I cannot remember exactly when, it was likely around when I was 24. I remember it clearly (despite being disassociated) as. I was coming down the ladder from the loft in our 1st floor flat in Northampton, We had the loft boarded out with a PC computer up their along with other stuff, and as. I hit the 2nd or 3rd rung from the floor, my legs suddenly gave out out of nowhere and I collapsed unable to move, I guess for around 5-10 minutes. I felt very strange and then I got up feeling disoriented. 

I honestly don’t know if I went to the doctors about it right after, or not, and I don’t remember if I told Chris right away as he was out when it happened, I may have forgot about it. All I do know is that over time they started happening more and more, and I recall, as I used to cycle to work and the gym, and into town a lot, that one time as I was on my way back my legs suddenly gave out and I couldn’t cycle anymore. The weird thing was whilst I couldn’t push my legs to pedal, I could still walk although I was only able to do so slowly and had to walk a fair way back home pushing my bike.

When I did see doctors about it they didn’t know what it was, and the first time I ended up in A&E it was after I had a vigorous sex session one night and I remember feeling this weird “pop” sensation in my head and I couldn’t talk or move for a few minutes after. I felt so strange and in hindsight now I am more “energy aware” I do feel like it may have been my kundalini energy frying my nervous system - having sex with someone who was inherently abusive I can only imagine really messed with my body in more ways than one.

It settled down and we went to sleep. The following morning I was on the bus on the way to work when suddenly my left side went weak, including my face. I was trying not to panic but I figured it couldn’t be a stroke as I was able to get up to get off the bus. I still wasn’t able to move my arm though after 10 minutes so I got off at the hospital and walked over. I think I must’ve text or called Chris to join me at the hospital, and the doctors did a CT scan - which came up clear. I told them about the sex session the night before thinking that was what triggered it, and (quite unprofessionally) the doctor said to Chris, “if she’s okay, good on ya mate!” (Because apparently inducing stroke like symptoms from a hard sex session is supposed to be something to proud of?!)

A lot of my memories are jumbled or fragmented although I do remember a lot of specific incidents, over the years. One time I was in A&E and a lovely doctor was trying to help and suggested something called Hyperkalemic Periodic Paralysis - a fault on the salt channels in the muscles that can cause paralysis attacks. This type was related specifically to potassium and having a sensitivity to it. After a while I managed to get referred to Oxford hospital for what I thought was going to be a potassium test but they instead did other tests that weren’t related to what I had asked for. It turned out to be a waste of time and a very rude nurse when I had a paralysis episode in my legs told me to “Just get up and walk” in response to it.

I did however get referred to a Period Paralysis specialist in London and I ended up going by myself, meeting the doctor, and having an episode whilst there. However he was able to determine it wasn’t PP due to the way my limbs were when in the episode. He held my arm up and it stayed up! With PP my limbs would have been floppy and fallen. I was confused as hell, and was back to the drawing board whilst over the years my attacks got more severe and more frequent for longer until I had to stop working. I was met with a lot cruel skepticism from so called professionals, accused of faking it and worse not receiving the answers or care I needed to stop it progressing. I was getting more and more fatigued between episodes and longer and harder to recover from them fully. I had also developed pain and soreness and was also diagnosed by a GP with fibromyalgia in my 20’s whilst all this was going on. 

There is more to come and I will talk more about these things in my videos too, I share to raise awareness and for my own therapeutic purposes as I still haven’t gotten the support needed to deal with my chronic illnesses, disabilities and the impact it has had on my life, as I had to adjust to a new reality…

I will be back for more blog posts on this soon as well, but for now I bid thee good night, and thanks for sticking with me if you are still reading!

Spangalactic Hugs

Bex

Behind Closed Doors - Part 3

 It came up in my readings that I’m hiding stuff from myself and others and I was super confused as to what it meant so I queried it further and I got the 10 of wands, burdens and responsibilities that need to be released and shifted around so I can carry them appropriately. I looked at it and realised I needed to go back and forth between doing my Twin Flame stuff over at www.twinsoulunity.com and my comic over at www.paracosmcomics.com, but it wasn’t solely about that and I realised it was about the literal burden of my weight issues.

I say issues because of the impact it has on my health and the reasons I gained weight, and when I look back it has always been due to some patriarchal, male related abuse and trauma.

Me meeting JB in Feb 2025

When I went to see John Barrowman in concert, and saw the photos that were taken I felt awful at how much weight I had put on, especially since I had last seen him years ago. It did however force me to confront my deeper wounds around the why too - starting with childhood SA, and compounded with bullying, abuse, medical issues and lack of help through out my life.

I really wasn’t loving myself, via neglect and self abuse in response to the way I have been treated and dealing with other emotional issues. I am now doing things to help change my relationship with food and habits, as well as moving towards finding a dietry lifestyle (NOT A DIET) that works for me that is nutrition dense, vegan, and enjoyable. I think I maybe circling back to the raw vegan stuff again.

So… why the title when the previous posts were about the abusive relationship I was in? 

I still think, as I said in my other post about my weight that the SA as a child was where it started, and being bullied by people in the street about my weight, and at school certainly didn’t help. I can’t remember if I said about the ex though, and his physical disgust and aversion to obese people, like he made a point of saying how physically ill it made him to see it. Yet both myself and his ex partner were overweight and his ex, was muscular and fit to start but ended up putting on a lot of weight after being with him for a couple of years. 

When I DID lose weight when I was with him, whilst he was in prison, I got down to a size 10/12 - I am not going to lie, I absolutely LOVED being slim. Buying clothes and borrowing them from friends was a whole new experience and easy and I felt a lot better too! But my weight is tied to my emotional and mental health and I have had so much to contend with that food issues, binge eating and lack of exercise from mobility issues, and fears, had me piling on the weight again over the years. I have fluctuated wildly depending on dietary factors, when I was more mobile, and also I lost a lot of weight when I got ill with pneumonia - 3 stone in 2 weeks! That was scary!

There was a time the ex didn’t defend me when someone shouted out about my weight whilst we were out cycling and his response was to just say, well you are overweight. 

I am tired of feeling like my weight defines my worth or lovability - I know logically in my head it doesn’t but the years of self hatred and loathing and feeling unattractive because of my weight has been deeply ingrained into me. 

I am not looking for sympathy, I guess understanding and connection is the only reason I share my deeper feelings and maybe the hope my sharing helps others feel a little less alone also. 

I have been celibate and single for over 15 years, literally dated once in that time, and any interested parties in me over the years, have been completely unsuitable and definitely not requited on my part. 

 I hope when I do eventually find mutual love (for the first time) in a real life physical relationship, I can get past these issues and just learn to love and accept myself as I am, regardless of whether or not I ever manage to lose the excess weight. I wouldn’t have an issue with having a partner who whatever size, its about WHO they are and how they make me feel, not so much what they look like.

I hate to say I’m feeling a little uncomfortable now about being seen intimately because of the low self esteem around my weight, but I’m also sure that with the right person, I would work through that. 

I’m looking forward to finding ways though to live more peacefully and in alignment with what I need, focusing more on following my joy and in that maybe my weight will release as needed.

If you’re struggling with your weight, know you are not alone, and you are loved also. You are not your weight, and who you are as a person is defined by you, not your size. 

Love & Huggs

Bex

xXx

A Heavy Weight

 

Ever since I was 11 I have been for the most part overweight - when I hit puberty hormones, trauma and bullying contributed to my increasing weight - I had no idea why I was that way, I walked most days to and from school, but my fitness was terrible and I struggled with physical activities. Now knowing that I have always been trying to live at a level of “healthy and normal” when the whole time I was disabled it ofc makes sense but no one saw that, and I didn’t understand why life was so difficult for me. I have Autism and ADHD, hyper mobility (I think EDS but not yet confirmed due to limited help from NHS and the way too rigid testing) - and I likely have had PTSD from being sexually assaulted / attempted rape at age 8/9 by an older boy, which I think is likely the root issue of a lot of my weight issues that are not influenced by genetic problems. I have been reluctant to share much about my weight journey, but I realise  that doing so may possibly help others on their journey, as well as release a burden I carry from not talking about. Stress is a huge factor in weight gain, cortisol literally makes us gain weight and eat more (cortisol cravings) so stress from trauma, bullying, lack of support etc, ofc feed into this vicious cycle I am keen to break. 

I am taking a holistic approach after years of on and off binge eating, and trying different eating approaches. I have tried Slimming World which I enjoyed going to groups but not vegan specific, which made it extra work, and they “punished” you if you missed a meeting by still charging you for it - for someone disabled and chronically ill this is an extremely ableist approach as well as financial control trauma trigger which is a huge abuse issue for me. Punishments never work, and it only pushed me to leave the group. 

I decided to go to the Doctors in 2024 and ask for a referral to the weight loss clinic in order to get clinical and therapeutic help, and am currently on the waiting list. 

Depression and PTSD have been in my life from childhood, and with it disordered eating. I have a tendency to binge eat, but I have discovered that having AuDHD impacts hormonal influences such as appetite regulation. I also have developed a histamine intolerance which is a complex area to navigate and unfortunate atm I am not eating as I need to so this is influencing my health, bad skin, contributing to migraines, feeling unwell etc. Because I am also vegan for ethical reasons and also because I have intolerances, and IBS I am still trying to figure out the best lifestyle changes to follow without contributing to “dieting” and further disorded eating. 

I tried the Atkins diet when I was younger and lost 9lbs in a week but I couldn’t sustain eating that level of meat for long term (before I went vegan) and ofc put the weight back on. I tried raw vegan - but not to lose weight, but for other health and ethical reasons, and at the time I couldn’t sustain it due to the costs, but I did ENJOY doing it, creating meals and it regulated my bowels within 3 days as well as improved energy levels I FELT BETTER. However because of the histamine issues now, a lot of the stuff I ate would now likely contribute to allergy responses. It’s a work in progress. 

Because of my mobility issues from hyper mobility pain, Functional Neurological Disorder symptoms, dizziness from otosclerosis (hearing loss) and CFS exercising is on an as and when I feel able to basis. Strength and core stability are the focus rather than weight loss as those things are crucial for my day to day functionality. 

So for now, I am very slowly and incrementally focusing on the inner wound healing, and emotional recovery to help shift towards better choices in how I eat, and what I eat that supports my wellbeing instead of adding to my problems. 

I am working on body neutrality which means to accept my body as is, that it exists as a consequence of choices made, and effects on it rather than the cause of issues so I can treat it better. Dis-association is the main issue as a trauma response, which leads to eating over feelings, in an attempt to feel and be safe from every perceived threats and this is something that needs to be “re-programmed” so I can feel safe in my body and live more in the moment.

So for now, I am off to “do the work” and if you have read this far I thank you for taking the time.

Ciao 4 Now

Bex

My Little Pony Customs (2006 - 2009)

I originally started customizing My Little Ponies in 2006 and this was my first one using a G1 bait Majesty. She was named The Nite-Mare.

She sold on Ebay :) x

Another 2006 pony based on Dark Phoenix from the X-Men, using a G1 Rosedust Flutterpony.

She sold on Ebay.

Violet was made using a G1 Glitter pony, I over haired her.

Violet sold on Ebay.

Baby Bl'ink (Blue & Pink :p) with raggy pony teddy called Peridot with a real Peridot gem cutie mark.

Made in 2009 using a G1 baby pony.

One of my first sculpey projects, made in circa May 2009, Captain Jack Harness of Torchwood & Doctor Who Prototype - I ran out of clay before I got to his trousers. O_o

Gifted to John Barrowman who plays Captain Jack.

Made in 2009. I used a G3 pony, his head sank in whilst *cooking* :( but I feel  well pleased with his outfit :) x

And he sold on Ebay also gaining me a commission from the buyer (below) :D x

I feel extremely pleased with him, my favourite custom by far :) x

Nellie was made using a G1 Lemon Drop and lots of Fimo in 2009. 

A G1 pony using sculpey and thickly stippled paint. Based on The Last Unicorn.

She sold on Ebay and currently resides in Germany.