Privacy & Cookies: This site uses cookies. By continuing to use this website, you agree to their use.
To find out more, including how to control cookies, see here: My Privacy Policy

Home
Podcast
Health
Faith
LGBTQ+
The Brethren
Freebies
About
Contact

Freebies

The Family Patch's Free Chakra eBook for Kids

The Family Patch free Social Media Stats Spreadsheet

The Family Patch's Free Advent Activity Calendar Printable PDF

The Family Patch's Weekly Planner Sheets

The Family Patch's Free Crochet Conversion Printable Chart

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.

Check out our podcast

Subscribe to Blog via Email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 26 other subscribers

Email Address

Find Me on Instagram

aspiraldance

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

*Finally* got my hair cut again, for the first tim

*Finally* got my hair cut again, for the first time in 3 months. It was desperate for it, because I was starting to grow a real mullet (see picture 2!) But between back to school, 4 viruses since the end of September, a trip to A&E and a hospital visit in another town, I just hadn't had chance to go before now. Anyway, the hairdresser and I decided to go much shorter this time, even getting out the clippers 😲 I'm case it takes me as long to get back again. (Although I have an appointment booked for January so hopefully not). My initial thoughts were, "eeek, it's a little too 'boyish' for me!" But then I kicked myself for getting too caught up in gender stereotypes. I still keep getting a shock when I look in the mirror, but I'm working on it... What do you think? Too short or okay? We can tweak next time I go, I'm wondering whether to leave more length to the top next time for styling (who am I kidding, I'll never style it 😂) or just embrace the short short look entirely). Is this my Tinkerbell look? My style has changed a lot this past year, as I've begun to explore who I am more. Thea's transition made me look at who I am and where I had been hiding and trying to make myself fit in, and it's been interesting. And whereas I used to dress in things I thought were "respectable" and "unassuming", things that made me blend in and wouldn't get me noticed, now I'm dressing as I please. So I went to my appointment in my Proud Mythical Beast tee, green corduroy pinafore dress, and yellow tights 😂 I mean, why not? It's not like I get dressed very often, so when I do I'm going all out.

I'm going to start writing my Christmas cards this

I'm going to start writing my Christmas cards this weekend, so if you'd like one from me and Thea let me know!

I reorganised my room yesterday. All the craft stu

I reorganised my room yesterday. All the craft stuff I'm too ill to use is going in the loft - there's so much space now! My laptop & writing stuff is at the end of my bed. Meds & snacks are in easy reach. Crochet is to hand. And I have space for an altar above my head. I am absolutely wiped out today thanks to the effort required to do this even with @theashortman's help. And I mean I am beyond fatigued - I can barely function! But I am SO happy - my room feels so big and airy now. We still need to sort under my bed and rearrange my bookcase though! And I want my whole house to feel like this!! But I just don't have the energy... I need a fairy Godmother to wave her magic wand 😂 Anyway, the rest of today will be spent horizontal, as my body protests what I made it do yesterday. It was so worth it, but I do hate this part... PEM is a bitch. #SpoonieLife #PostExertionalMalaise #ChronicFatigueSyndrome #Fibromyalgia #MECFS #MyalgicEncephalomyelitis
#MyalgicE #ChronicIllness #InvisibleIllness ID: photo 1 shows the end of Amanda's bed where there is a black shelving unit in front of the window. There is a purple back massage mat folded on the top shelf and on the second shelf is her laptop next to a pink lever arch file and pink plastic wallet. Photo 2 shows a small wooden unit with her medication stacked on the first shelf, a range of snacks on the middle shelf, and colouring books and pens on the bottom shelf. There are GMM merch items on the top, including her Rhett and Link bobble heads and lunchbox. Next to it is a computer table with a fan and lamp on the top, notebooks on the first shelf, a bag full of yarn and some crocheted hats on the next shelf, and note cards and envelopes on the bottom shelf. You can just see the bottom of her bookshelf on the wall above it. Photo 3 shows the head of her bed next to the door. Above it is an empty shelf with a small, painting on it. Above that is a shelf that extends over the door too. That is filled with white baskets with yarn in and a blue sewing box.

We had to go to town today for a dentist appointme

We had to go to town today for a dentist appointment, so we popped into Primark to get Thea some more tights. Whilst we were there, she treated me to these adorable slipper socks and hot water bottle to keep me warm over the colder months ahead 😍 The hot water bottle cover was a bit of a joke as well, because I have been sad about the fact we can't have a fluffy pet for me to cuddle up to. We have Sprite, who I love, but she isn't cuddly. She's getting better at not biting me as much, but she's not a cuddler 😂 I want a cat or a dog. But we're too poor and I'm too ill to look after one anyway. And that makes me super sad. So @theashortman
joked that at least this would be warm and fluffy! ID: photo 1 shows a pair of Baby Yoda fluffy slipper socks. Photo 2 shows Amanda, a white woman with short, dark hair and brown eyes,aying in bed wearing red pyjamas with white spots and holding a fluffy rabbit hot water bottle cover.

Yesterday Thea and I travelled almost an hour away

Yesterday Thea and I travelled almost an hour away to attend a hospital appointment. Because we knew I wouldn't be able to cope with both journeys and the appointment in one day, we stayed overnight in a hotel. And it was a huge deal... 1) I have not travelled further than about 10 minutes by car since my major relapse in January 2020. So I was super anxious about the journey. 2) I have not slept in the same bed as Thea since my major relapse in January 2020 either, because I have needed to be on my own. So sharing a bed *for the first time in over 21 months* when it wasn't even in our own home and I couldn't just go back to my own room if it got too much, was immense! Add in the worry over the hospital appointment itself, and staying in a hotel when I've hardly left my own home during the pandemic (remember, I have contamination OCD and my whole life was turned upside by a post-viral illness, so the world is slightly terrifying to me right now), and you'll begin to see how intimidating this whole trip was for me. I actually felt sick to my stomach for days leading up to it. The wonderful @marvellousmrsp rang our hotel in advance on our behalf and they put us in a room right at the very end of the corridor, away from people walking past, and reassured us on arrival that if we needed anything we only had to ask. We felt well looked after, and will always recommend Premier Inn (we've had good experiences with them before too) and good online friends who'll offer to advocate for you too when they see you worrying ❤ Anyway, we had a successful trip. I actually slept last night. We had fun messing around with filters 😂 I finally got @theashortman to listen to Carry On in the car as a distraction for me (and she enjoyed it - I *knew* she would!) And now I'm even cautiously/optimistically planning a holiday for next Summer if our tax credits get reinstated, so we can finally take O to the seaside (he's only ever had 2 single day trips to the sea in his life - he deserves a proper seaside holiday, bless him!) ID: a series of photos of Thea and Amanda using various cartoon animal filters including a dog, a rabbit, and reindeer.

My wheelchair arrived! 😃 We need to charge the

My wheelchair arrived! 😃 We need to charge the battery before giving it a proper try and letting me get the hang of the controls, but Thea has got to grips with folding and unfolding it for getting it into the car, and we had a try in manual mode so I could see how comfy it is ☺ It's gonna take a bit of getting used to being in a chair, but I'm excited to be able to get out and about a bit more... ID: a folding electric wheelchair with black cushions and wheels and silver frame.

AMAZING NEWS!!! My PIP decision letter came throu

AMAZING NEWS!!! My PIP decision letter came through today, and they have kept me on the standard daily living AND awarded me the ENHANCED mobility!! (I don't know why the award letter says they will *still* award me it as I got zero mobility support before - I've gone from 0 points to 12 points in that category, thanks to the support from @pippsupport, who I must thank properly in an email). This means I can now easily apply for a Blue Badge - finally! Applying directly through the council was so stressful I never managed it. And the back payment gave us a bit of a buffer and helped me add to the incredible £550 that my wheelchair fundraiser had raised so I've now ordered this folding electric wheelchair too! Soon I shall be able to get out and about more with my family 😃 Thank you once again to everyone who shared the fundraising link, donated, and supported me emotionally through the hell that has been my PIP journey. I have been awarded this until September 2026 - FIVE WHOLE YEARS before I have to face this hell again! I can't quite believe it! I am grateful for all your support along the way, this battle has taken so much from me, it's been ongoing since 2017 in one form or another... it's about time we got some relief! Here's to some good news at long last 😃 ID: photo 1 is an award notice from the DWP showing Amanda will get the standard daily living of £59.70 per week and enhanced mobility of £62.25 per week. Photo 2 shows a folding electric wheelchair. Photo 3 shows a shipping confirmation email for the wheelchair from the company Livewell.

TW: Blood Can we talk about the hell that seems t

TW: Blood Can we talk about the hell that seems to be getting blood from me these days? These photos show you what I look like this morning. I've got a pretty epic bruise forming on my left forearm. My right hand, which they jabbed 3 times, is more puffy than bruised right now 🤷‍♀️ It's more sore than it looks 😢 Left inner elbow is bruised. Left hand mildly bruised and puffy. Right inner elbow has pin prick mark only. This is because it took a Health Care Support Worker and 3 different Doctors over 3 separate occasions to get enough blood to run all the tests they needed (and then they still didn't get the last 3 vials sorted, but refused to put me through it a 4th time!) Now, I don't usually have a blood or needle phobia or anything like that, but during the second attempt I was dripping sweat and thought I was gonna pass out! And I don't normally sweat - my body seems to have forgotten how to do that when I overheat, so you can imagine how much of a state I was in 😭 When the doctor decided to try and draw blood from a vein between the knuckles of my ring and little finger using a syringe for negative pressure? OMG - the pain!! The easiest of all draws was the one the HCSW did - her 2nd attempt on my left inner arm. Blood actually shot out, so fast it kept leaking out the canula she put in and she got a consultant to check and they took it out as the consensus was it was branching off an artery and *that* was why the blood was coming out so easily. Every other time they tried to draw blood, when they *finally* found a vein (I have teeny, tiny veins that are hard to find to begin with) they just wouldn't give up any blood. It didn't matter how tight they made the tourniquet. How much I squeezed my hand. In the end they used a canula instead of a needle to stop it clotting? 🤷‍♀️ (I think that's what they said). Ugh, anyway... I lost count of how many holes they poked in me. It's a good job I went in without a phobia, but I can't say I didn't come out without a little bit of trauma! I'm going to be dreading my next blood test, aren't I? Anyone else have this issue? Have you got any tips? ID: a series of photos showing the bruises mentioned.

Finally home after 9 hours in A&E... an ECG, chest

Finally home after 9 hours in A&E... an ECG, chest xray, and 3 lots of bloods because my veins would not comply at all. It took multiple doctors, about a dozen places across both arms and hands, and still they didn't get enough for all the test results (or they did but the lab didn't get the final 3 vials 🤷‍♀️ and the doctor refused to put me through yet another blood draw!) I am covered in bruises. What is with my veins - first they can't find any suitable ones, and then when they do they don't give up any blood 🙄 Anyway... everything came back clear, aside from a fast heart rate (140bpm on arrival) and the general consensus is the pain is muscular and connected to badly controlled asthma - I never knew asthma could cause pain 🤔 I've been prescribed steroid tablets until the GP can see me to prescribe a steroid inhaler and some pain meds. So all clear on the blood clot front thankfully - phew! Now I collapse after 9 hours of overstimulation which triggered a migraine and severe fatigue.

Load More... Follow on Instagram

Find me on Facebook

Find Me on Pinterest

I was a BiBs2019 Finalist

As an Amazon Associate I earn from qualifying purchases.

(C) Copyright 2019 - All Rights Reserved

Site by Solo Pine Designs