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About Me

Hi, I'm Amanda, a 30-something mum to one. Both myself and my husband are chronically ill, and our son has ASD and ADHD. I hope to help others with chronic illness to move from overwhelmed to empowered by encouraging them to prioritise self-care, lean on faith, and build daily practices that are both accessible and affordable. I do hope you'll join me along the way.

I was a BiBs2019 Finalist

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aspiraldance

Spoonie Warrior on a Sacred Healing Journey 🙏🏻Balancing Self Care with Family Life 👪
Christian ✝️ New Age Hippie🧘🏻‍♀️ Blogger 👩🏻‍💻

PIP APPEAL DAY Today’s the day. After 20 months

PIP APPEAL DAY Today’s the day. After 20 months of waiting (the actual application goes back to February 2018), I finally have my appeal. This is the paperwork from the entire process... over 170 pages worth of stuff. From my initial answers and the report from the assessor, to my mandatory reconsideration and then my appeal. I filled in every step of the way using guides to help me understand how to express my illness in ways that fit the ridiculous points based system which does not make proper allowances for so many of us. And I refuse to re-read the assessor’s responses, because I know it will make me too angry to see all the places she cherry picked information and outright lied. Nobody should have to go through all of this to access support. Least of all somebody who is chronically ill and struggling to do the most basic things like wash and dress on a daily basis. But that’s what our system does to us. The system is broken. Over 70% of appeals are found in favour of the applicant (keep your fingers crossed 🤞 that I’m one of them too). It is clearly failing far too many people and putting them through undue stress. And I fear this is only going to get worse as more and more people find they are having ongoing issues after having had COVID-19. The system needs to change. This is not how we should be treating those who need a little help because they had the misfortune of falling ill or having a disability that makes life that little bit harder for them. Because all it does is reduce us to a list of symptoms and tick boxes, rather than seeing us as actual human beings, with hopes and dreams and passions and skills like everybody else.

Finally feeling well enough to play a game in bed

Finally feeling well enough to play a game in bed with O.

At the hospital for my appointment at the breast c

At the hospital for my appointment at the breast clinic. Wearing my new special lenses to try and help with my migraines. Last time I did a trip out (for my eye test) it triggered the worst migraine flare. Hoping that this time goes a little better 🤞

I did something today!! My head still hurts. I sti

I did something today!! My head still hurts. I still feel wobbly. But I managed to make my own breakfast and lunch AND draw this basic map for my novel before I crashed. After over two weeks of barely being able to function this is HUGE! I had to lie down and close my eyes and meditate and listen to an audiobook and basically rest as much as is humanly possible for the rest of the day. But I did something. And it was creative. And it felt good. I was watching a case study yesterday of somebody who had used Neuroplasticity to help heal from chronic vestibular migraines. Neuroplasticity works on the basis that we are always firing Neurons and we can always create new pathways, even when old ones are deeply entrenched or broken. And what this person said really resonated with me. They said two things actually: 1) they made healing their “job” and 2) they embraced the creative part of themselves begging to be set free from all the “shoulds” in life that meant they never got to do the creative stuff. So that what I’m trying to do too. Make healing my “job”, not as something I have to achieve, but rather as something that is important and worthwhile and can be prioritised. And as a creative person, embracing my own creative projects is a part of that. This map is for the world my novel is set in. The novel I started a first rough draft of 10 years ago. The novel that has been pushed aside because of parenting and work and charity projects and everything else that felt “more important”. I’m not well enough to look at a screen and write, so I’ve been putting it off again. Except I have 60k+ words already written that just need editing. I have a full scene by scene breakdown of the entire first book. And I have a pen and paper that I can use to write new scenes and flesh out the old ones even whilst laying in bed. Just as I did with this map. Before today I dreaded trying to create a map of my world. It felt too huge and complicated for me to manage in my current state. And yet here it is. My world. The book takes place solely in Inness, but the rest of the world’s influence is important in various aspects of the storytelling. So I needed a map. And here it is!

MIGRAINE FRIENDLY BREAKFAST I’ve been eating po

MIGRAINE FRIENDLY BREAKFAST I’ve been eating porridge most days since checking out the migraine friendly diet (avoiding potential triggers). However this morning the porridge didn’t work out quite so well (turns out I do *not* like the taste of goats milk 😂). So I made this instead. Toasted rye bread with sunflower seed spread on one and pumpkin seed spread on another, topped with strawberries and blueberries. According to the list in @thedizzycook, bread is fine so long as it isn’t fresh (something to do with the yeast). These rye bread slices are ideal as there are so few ingredients in it I know exactly what’s in there. Unlike the gluten-free pittas I’ve been loving lately. Nuts should be avoided, so I’ve switched to seed butters. I love slices of apples and pears dipped in them for a snack, and will soon need to buy more! And both strawberries and blueberries are allowed too (which surprised me as I’m sure the low histamine diet I tried last year said to avoid strawberries 🤷‍♀️). Unfortunately my favourite berry, raspberry, is to be avoided 😔 But I’m choosing to focus on what I can have rather than what I can’t. What did you have for breakfast?

This book is so good! I came across it randomly th

This book is so good! I came across it randomly the other day whilst looking for an easy listen during my migraine hell, and I’m so glad I did. It is funny. It is thoughtful. And it speaks to anyone who understands how passionate sci-fi and fantasy fans are! I have always been a big fan of sci-fi and fantasy. I grew up watching Star Trek (The Next Gen, Voyager, some of Enterprise - I seemed to bypass DS9 for some reason but caught up a few years ago, along with finishing the Enterprise seasons I missed when I went to uni). I watched Buffy and Angel and Roswell - oh the late 90s were so full of teenage stuff like that! I watched Stargate too (up until around season 5 when I went to uni and missed everything after that. I’m working on fixing that now 😉). And once I met Tim he introduced me to even more like Farscape, Babylon 5, Fringe, and Firefly. I also loved reading these genres. I’d spend half of my babysitting money on the next Star Trek novel. I fell in love with the works of Tamora Pierce (who made me want to become a writer myself - my novel is in slow progress). And in my uni days I discovered the joy (and often truly awful experience) of fan fiction. So this book was everything I wanted it to be and more. It is a retelling of Cinderella, where Elle is the daughter of the cofounder of a ComicCon style event. Her father has since died but she turns to her beloved Starfield for comfort all the time. She writes a blog and fan fiction about it. And she does NOT like the actor chosen to play the lead in the reboot. Said actor is a closet fan of the show himself, and through trying to contact the ComicCon organisers he ends up texting Elle. Neither know who the other is, but they develop a lovely friendship. Because of their mutual love of the show and what it means to them as they navigate life. It’s a romance story for geeks, and I love it. And it is the first in a whole series. I have bought the second and have the third on pre-order. Seriously, if you are a bit of a geek like me you’ll love this, I’m sure. Here ends the book rec. Tell me, would you like me to share more about the books I’m reading/listening to? I tend to sway towards YA fantasy 😉

THE FACE OF SUFFERING just to keep it real, this

THE FACE OF SUFFERING just to keep it real, this was what I looked like yesterday after a cal to my GP in floods of years. Most of the time you don’t see those of us with chronic illness at our very worst points because we are so busy clinging on and trying to survive through a barrage of symptoms that can only be described as hell on earth. Plus we don’t like to be seen this way, who would? But this is the face of reality when it comes to chronic illness. It isn’t pretty. It isn’t inspirational. It just is. I’m thankfully doing better today. By better I mean I’m able to lay in bed in a darkened room listening to an audiobook and not feel like I’m dying. My head pain is less. My dizziness comes and goes and isn’t a constant threat of spinning out of control. I managed to sleep last night on 3 pillows instead of semi-upright, and my dreams, whilst stressful, didn’t involve vertigo. I’m exhausted but at least I slept. I’ve been able to speak to my husband and child today without it feeling like ice picks being driven into my eyes. I’ve been able to listen to an hour of chanting music without my anxiety spiralling so far out of control that it feels like I’ll never feel safe again. The worst case scenarios that filled my mind yesterday and made living through another moment (let alone years to come) feel like the most terrifying thing in the world. I haven’t cried today. I cried a lot yesterday. I’m not well. I still feel a lot of anxiety. It will be a long time before I stop waiting for the pain and dizziness to suddenly increase again. I’m not talking days, I’m talking weeks and months. That’s what it took after the vertigo hell of Jan-March. I had actually just started to stop worrying about it and living my life again when this hit, so I’m even more nervous of a repeat performance now. But at least I’m able to see light at the end of the tunnel today. Yesterday it was just dark. It’s rare that my health issues scare me this much. I’ve been chronically ill for years and have built up coping strategies for various things ever since my early teens. But these migraines and especially the vertigo are my version of living hell. And that shows in this photo.

RESULT I contacted my MP about my 20 month long P

RESULT I contacted my MP about my 20 month long PIP appeal wait and he contacted HMCTS and guess what - I have a date for a hearing next week!! And because of Coronavirus I don’t even need to leave my house as it will be carried out over the phone. Moral of the story - even if you disagree with your MP on most things, they are still happy to help you in such matters. Today has been a very up and down day. It started with me on the phone to my GP in floods of years after a night with such bad pain and vertigo I barely slept and when I did sleep I dreamt I was flying through space and dizzy as hell. I just can’t get this migraine and hideous vertigo to give in. And I am beyond my limit now. And all the GP can offer is a different pain medication to try and waiting it out 😢. But then I got a ton of post. I mean a ton. I’ll share what I got another day when my head is clearer. For now I just wanted to update you on the news of my tribunal hearing. Keep your fingers crossed it goes well next week 🤞 and please, please send me all the healing vibes you can to get this migraine to go away. I can’t take much more of this 😔

Just seen this. I’m so glad to see that somethin

Just seen this. I’m so glad to see that something as well-known and well-used within the blogging and influencer communities as @tailwindapp has taken this step. It was needed and sends a message to everyone that language matters. Head on over to the Tailwind blog to read the full post about it.

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