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About Me

Hi, I'm Amanda, a 30-something queer, disabled woman. I'm married to Thea, and mum to O. I've been blogging in some form or another since 2006, and over time my focus has changed many times. But these days you'll mostly find me talking about health and disability, LGBTQ+ issues, and the books that have had an impact on me.

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aspiraldance

Queer, Disabled, Christian Pagan 🏳️‍🌈 ✝️
Writer, Blogger and Podcaster 👩‍💻🎙
Wife to @theashortman 👭

We have a very happy 10 year old! He has wanted a

We have a very happy 10 year old! He has wanted a Switch for ages, and we told him he needed to save up for one, because we couldn't afford to just buy him one outright and he needed to contribute towards it. Well, he has been saving his pocket money for months and months and months! And we had worked out that by Christmas he should have saved enough that we could afford to put the rest towards it. And he was waiting patiently for that... But then Thea's parents offered to help towards getting it for his birthday. And we kept it a secret. Especially as he knew that my parents had helped towards getting him the laptop we decided to buy recently when his tab stopped working (because he can use a laptop for school work too). So in his mind he had months to wait for this. But that boy has saved up so much money. And he hasn't had a holiday in several years now. We never get to take him on days out either. He copes with me being super sick all the time, and has dealt with a lot with Thea's transition this past year. If anyone deserves a treat for their tenth birthday it's this guy! Seeing his surprise, and hearing his emotional "you seriously got it for me?" has absolutely made my day, my week, and my year! We are so lucky to have him in our lives, we hit the jackpot with him, and I am so very grateful I get to be his mum and see him grow every day. I can't wait to see what the next ten years hold... Video descriptiom: O, a white boy with short dark hair is sitting on the end of a bed in pyjamas opening a birthday present. When he sees it is a Nintendo Switch he gets a little overwhelmed.

I had a major meltdown today... over make-up! I a

I had a major meltdown today... over make-up! I asked Thea if she would do my make-up, because I wanted to feel pampered and pretty. And she's so good at doing her own make-up these days. I have no idea how she has got so good so quickly 🤷‍♀️ she certainly hasn't had any help from me! The problem is, I don't really do make-up... Make-up makes me nervous. Unlike most people who feel good when wearing make-up, I feel ridiculously self-conscious. I think everyone is going to look at me and see a silly little girl wearing her mum's make-up (not that my mum ever wore make-up or that I ever put it on as a kid 😆 so I've no idea where this idea even comes from). Basically I think I make-up looks ridiculous on me, and just highlights how much I shouldn't be seen. Now how's that for something to psychoanalyse 👀 Anyway, I feel super self-conscious in the nudest of make-up, so stick me in layers of contouring and bold colours (that *I* think are perfectly suited to Thea's skin tone but a bad match for my own) and it's a recipe for disaster. I looked in the mirror and felt like a clown 🤡 But I didn't want to hurt or offend Thea, not after she had done such a sweet thing for me. So my internal battle imploded and I had a meltdown. I sobbed 😭 and Thea hugged me, and told me not to be so silly and that she can take criticism if I don't like something, and then she washed my face and gave me a face mask and sat by my side and talked me down. I don't deserve her 🥺 And then, of course, being me I felt silly for all of this and decided I needed to share. Because I know that when I feel shame like this it's better for me to get it out in the open. Why? Because my own inner critic will be far harsher than anything you could ever say! And at least then I know what you actually think, rather than what my own mind concocts. Does this make me crazy? Possibly! Thea has already told me one today that I'm an enigma wrapped up in a conundrum 😂 But do you know what scares me the most about sharing this? Not that you'll criticise me for looking awful, but that you'll criticise Thea's skills. Because they are awesome. She just had a bad model today! So be kind. ID in comments

Another new medication - this will be the 6th thin

Another new medication - this will be the 6th thing I've tried as a migraine preventative. Will this one be the one? I'm extra nervous about this one - the list of potential side effects (many of which are very common or common) is huge! But the Neurologist has my titrating up very slowly - 25mg once every other day, then once a day, then twice a day, etc in 2 week intervals until I (hopefully) manage to reach 100mg daily. And he said if I need to leave it 4 weeks between increases I can do that too. I appreciate it when doctors understand that I'm extremely sensitive to medication and sometimes need smaller doses or a longer period of adjustment. So, anyway, keep your fingers crossed for me that thebside effects aren't too bad and this actually works 🤞 I've heard some pretty good things about Topiramate for migraine prevention. If I could decrease the frequency and/or severity even a little it would make a big difference. I'm still massively exhausted from all that has been happening lately, very mentally and emotionally drained, and scared because there are Covid cases at O's school but all restrictions have been lifted 😭 So I'm just trying to take each moment one breath at a time right now, because there really isn't much more I can do. How is everyone else doing? ID: a white medicine box containing Topiramate. #ChronicIllness #ChronicPain #ChronicMigraines #InvisibleIllness #ButYouDontLookSick #SpoonieLife

What a palaver! I saw the Neurologist today. My a

What a palaver! I saw the Neurologist today. My appointment was at 3pm. My letter said go to clinic 4. When we got there, there was nowhere to book in and we asked a member of staff who just told us to sit in the waiting room and we'd be called through... By 4pm we hadn't been seen, but other patients had been told they were running late as there had been an emergency. So we left it a bit longer. By 4:30pm, Thea managed to grab a member of staff to ask what was going on... at 4:45pm I was called through. To clinic 3. Where I had apparently been marked as a no show because we hadn't booked in at the main entrance. Of course we're kicking ourselves for getting it wrong, but honestly it really wasn't very clear. There were no signs telling you to check in at the main entrance. And my letter clearly sent me to clinic 4 not clinic 3. The patient after me had done the same thing. And nobody in clinic 3 had checked in, they did just sit in the waiting room and wait to be called through. So, anyway, I saw the Neurologist eventually, feeling very silly and super exhausted and really nervous. He was very nice, explained that in order to try the new CGRP meds I would need to try Topiramate first (because only 2 of the 5 preventative meds I've very prescribed count towards the 3 you need to have tried to fit the criteria for these new meds). He didn't even know why I'd been prescribed the other 3, as 2 never seem to help, and 1 only really seems to work well in kids 🙄 So anyway that's the plan. I have to try Topiramate and keep a headache diary for 3 months before being reviewed. If the Topiramate helps then great, if not I will then meet the criteria for the new CGRP meds. He brushed aside my question about CCI, but I think I may need to see an EDS specialist to ask about that as it doesn't seem to be well known in the UK. After waiting for the new prescription (which they didn't have, so Thea has to go back again) and picking O up from his friend's house, we finally got home at almost 7pm. I am beyond exhausted 😩 But I don't have to do anything until O's 10th birthday on Sunday now though. I think I may have some PEM again after this, which sucks.

This bird really has a thing for my skin 😫 Vid

This bird really has a thing for my skin 😫 Video description: Amanda, a white woman with short, dark hair and dark eyes is wearing pink pyjamas and sitting in front of the sofa in her living room. Sprite, a yellow and green budgie, repeatedly flies onto her head and bites her forehead.

This is what PEM looks like for me. I expected it

This is what PEM looks like for me. I expected it after the stress of Thursday, but expecting it and being okay with it are two very different things... It's laying in bed with the cutest eye mask you can find to cheer yourself up. It's relying on migraine meds, pain meds, antiemetics, @cefalyuk, and Tiger Balm to try and deal with the pain and nausea. It's being desperate to sleep because you can't keep your eyes open, but your body doesn't seem to be able to relax enough so it keeps jolting you awake. It's tweeting into the void that you need hugs because everything hurts and you need to move but you're too fatigued to even sit up. It's listening to the end of one audiobook and immediately starting another so you aren't left with nothing to do as you lay all alone. It's finally having enough wits about you to create a post like this 56 hours after the PIP assessment that caused this. And it's knowing that even though you may not still be feeling right you've got to pull yourself together by Monday afternoon so you can get to your Neurology appointment, that you're super nervous about and is likely to cause another crash. And you have 5 days to recover from before your son's 10th birthday on Sunday. And it's knowing you have to recover from birthday celebrations in time for the Open Evenings at Secondary Schools at the end of the month, so you can make an informed choice about where to apply for a place for your son. And it's knowing that somewhere within all of this you *may* hear back from HMRC about your tax credits, and that October *may* bring you news of your PIP. This is what PEM looks like for me during a ridiculously stressful month. It's pretty rough, and so I may not be around as much for a while. Or I may be around more as I need the company. Who knows. But either way, you know why... Roll on Halloween, hey? ID in comments. #ChronicIllness #InvisibleIllness #ButYouDontLookSick #PostExertionalMalaise #ChronicFatigueSyndrome #MECFS #Fibromyalgia #ChronicMigraines #HypermobilitySyndrome #EhlersDanlosSyndrome #SpoonieLife #DisabledLife #ThisIsWhatDisabilityLooksLike

Currently sitting in bed, feeling sick with anxiet

Currently sitting in bed, feeling sick with anxiety, reading through what I wrote on my review form and the notes I've made to remind me of what I need to say for each section. This is my 3rd PIP assessment since 2017 (not counting the questions at tribunal last year) and it never gets any easier. In fact I think it gets worse, because I know now how much they will try to trip me up and catch me out to avoid awarding me points. Based on the descriptors I should be getting way more points than I have (I currently only get basic daily living, despite being unable to prepare food, wash myself, dress myself, communicate or read when I have a bad migraine, or cope with social interactions). And I get nothing for mobility, despite being mostly housebound and often bedridden. It makes me so angry 🤬 I want to hope that this time will be different. That because I have a disability advocate this time around they won't try to twist my words as much. And that I've learned never to let my natural sense of determination and positivity make it seem like I'm less ill than I actually am. This time if I say I can't do something and they repeatedly ask, "but what about if..." I'll be firm in my answer of "no". But I've been through this too many times before. I've had my hope of help and support dashed once too often. I'm battle worn and defeated. I'm scared to even hope. So today I find myself sick with nerves. My assessment call is in an hour (10:30am GMT). Please send all the good vibes my way... ID: 2 stacks of papers and a pen sitting on top of a bed cover. The top sheet reads "personal independence payment table of activities, descriptors, and points" and has some handwritten notes on it. You can just see a scanned copy of a review review underneath showing Amanda's list of diagnoses. #ChronicIllness #InvisibleIllness #ButYouDontLookSick #HypermobilitySyndrome #EhlersDanlosSyndrome #Fibromyalgia #MECFS #ChronicFatigueSyndrome #ChronicMigraines #PosturalHypotension #OCD #Anxiety #Depression #DisabilityAwareness #DisabledLife #SpoonieLife

Sprite is getting less bitey than she has been - s

Sprite is getting less bitey than she has been - she isn't just flying at me and biting straight away. And she isn't biting down as hard, it's more like nibbling now. She even sits nicely and talks to me sometimes without any nips ☺ but I'm still having to be on my guard! We think the issue with the biting down hard and aggressive behaviour has been related to puberty. So hopefully as her hormones start to settle a bit as she gets older she'll continue to get gentler and be her sweet little self where we can just enjoy being in her company without so much vigilance 🤞 Video description: Amanda, a white woman with short, dark hair and dark eyes is sitting on a sofa wearing a white tshirt with red collar. On her shoulder is Sprite, a green and yellow budgie, who keeps nibbling at her face and tshirt. At the end Amanda shakes her tshirt to get Sprite to fly off.

Apparently today is #NationalReadABookDay - who kn

Apparently today is #NationalReadABookDay - who knew? Anyway, I read most days because it helps keep me sane. I get lost in other worlds, meeting new characters, when my days are so limited stuck at home, often in one room. I don't know what I'd do without books. I've always loved reading, but it has taken on a whole new meaning for me this year! Today I finished reading Cherrington Academy by @rjcafferyauthor and am about to start Coming Home. The first is about friendship, first loves, betrayal, and fallouts - it's pretty tough emotionally. I'm reading to see where the story goes next though. I also have Felix Ever After on my Audible for when the words start jumping around on the page (damn migraines!) I'm not very far through it, so can't describe it much, but I'm enjoying it so far. I thought I'd share with you some of my other favourite reads this year from writing friends I've made online, so you can check them out too. I can't remember what order I posted the photos now so they might be out of order 🤔 but here they are: Untouched by @jaymebeanauthor - a thrilling jungle adventure with bisexual rep. The Shield Road by @dewiwrites - a collection of fantasy short stories that work together to form an overriding story. Not Quite Out by @lw.writes - a rainy day romance with great LGBTQ+ rep You can buy all of these except The Shield Road at my favourite independent bookstore @queerlituk Why not go and grab one today?

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