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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 👩🏻‍💻 She/Her

Bastards 🤬 Look what just came through the pos

Bastards 🤬 Look what just came through the post. I only had my tribunal last Summer (after almost 2 years of waiting for it), and was told I wouldn't be reassessed for a few years. They didn't even give me a bloody year before making me fill in another damn form 😭 That being said, I am absolutely filling this in and telling them how much more debilitated I am now than I was when I first applied, because they didn't take any of that into account at my tribunal. I'll tell them how I am mostly housebound and have left my house no more than once a month this year and less than that last year. Because they still have me down as being able to walk my son to school 🙄 And I shall tell them how I am now on antidepressants and have been diagnosed with OCD and am waiting to start therapy for this. And how I became suicidal last year. I will tell them about the ongoing dizziness and vertigo, and my migraines. How they make me even less steady on my feet than I already was with the hypermobility, because they refused to accept that before. I doubt any of it will make a difference, but you can be damn sure I'll be telling them about it if they're going to send me forms like this. I don't get what I should, and I'm scared they will take what little I get away from me. Please keep everything crossed 🤞 ID: a photo of a form from the DWP about Personal Independence Payment, asking me to fill in the Award Review so they can check I'm getting the right amount of PIP.

Managed to write 1043 words for my novel today. Al

Managed to write 1043 words for my novel today. Also spent a large part of the day questioning everything about it, especially the relationship between Bethia and Carew. So I went through the first draft and found some of my favourite scenes with them. 1. ‘You shouldn’t let them hurt you like this,’ he said harshly, turning to look towards her. Bethia was shocked to see that his eyes shone with anger and shrank back slightly in her chair. Suddenly his face dropped and his voice softened. ‘I’m not blind, Bethia,’ he sighed, ‘I know that some of the girls have been giving you a hard time.’
Bethia looked at him incredulously. Nobody else seemed to have noticed, certainly not her other teachers. In fact, Sister Fenella seemed to enjoy giving her extra duties as punishment for being late for her chores.
‘Why didn’t you tell me?’ he asked her quietly
‘I… I didn’t want to disappoint you.’
‘Disappoint me? How could you have disappointed me?’
‘I don’t know,’ she said, feeling very small and stupid, ‘I just thought that if I was better I wouldn’t let them upset me and then I could have figured out how to deal with them.’ 2. ‘Why are they all looking at me like that?’
He looked at down at her and spoke just as quietly. ‘They have only just been told that you are coming with us and several disagree with Devin’s decision.’
‘Oh great,” she muttered under her breath. ‘Not only do I have to worry about making sure I behave in front of the higher families, but I also have to worry about the healers watching my every move’. Carew chuckled slightly and she turned to glare up at him.
‘What’s so funny?’ she asked.
‘Oh don’t you worry about the other healers, they will be so busy dealing with the mess the higher families have gotten themselves into that they will quickly forget you’re even there.’
‘I don’t know whether that makes it better or worse,’ she said, suddenly shuddering.
‘Bethia,’ Carew held her arms by her side to stop her fidgeting, ‘I know this is hard, but I won’t let anything happen to you. Just remember to only speak when you are spoken to and to stay by my side at all times. That way you can avoid any unfortunate mishaps that might occur.’ (3 is in the comments)

So many pots and seedlings 🌱 Gardening with ch

So many pots and seedlings 🌱 Gardening with chronic illness is hard. I have to work around my pain, fatigue, and other symptoms, and always stop before I go over my (incredibly low) limit. It is frustrating to know there are still seedlings that need repotting, but they will have to wait. I've reached my limit for today. Some days all I can do is water them. Some days I can't even do that and have to rely on Tim to do it for me. But some days I have enough energy to dig my fingers in the soil and tend to them more. Those days are the best. Many things make this easier for me - water trays that the pots sit on, meaning I can water and leave them to soak up what they need. Potting benches that mean I don't have to bend down so much. A husband who takes over when I just can't. A year ago I couldn't have even imagined being well enough to do any of this. I still have lots of bad days, but my word it feels good to be able to grow things this year! ID: a series of photos showing Amanda's greenhouse. The first shows the inside of the greenhouse itself with 2 tiered benches that have seed trays on them. There are also plant pots on the floor and a bag of compost. The second one shows the vegetable seedlings, with peas, beetroot, and lettuce growing. The third shows a variety of flowers in trays, all growing fast. And the fourth shows 2 trays filled with larger pots with individual, larger seedlings in. #SpoonieLife #SpoonieGardener #ChronicIllness #InvisibleIllness #ButYouDontLookSick #DisabilityAwareness #ChronicMigraines #Anxiety #MECFS #Fibromyalgia #EhlersDanlosSyndrome #HypermobilitySyndrome #ZebraStrong #GardenersOfInstagram

Trying to up my make-up up game... this feels so d

Trying to up my make-up up game... this feels so dark and "in your face" to me - eyes and lips together, what are you playing at Amanda? 😱 But Tim says it works and they have far better taste than me, so... I have a very weird relationship with make-up. I love it and admire it on other people, but feel silly when wearing it myself. It's like I never grew up and feel like a little girl play acting at being a grown up, like I'm trying to be something I'm not and everybody will be able to see through it. But I'll be 37 this month, there must come a time when I start to feel like I can pull this off without looking like a clown, right? Anyway... made it to church this morning for the first time in over a year. And managed to pop a bit of make up on and come outside. I'll be tucked up in bed before too long 😆 so photo evidence while it lasts. (I did not wear this make up to church BTW, this is a garden only look 😉).

Last week I asked the wonderful people of Twitter

Last week I asked the wonderful people of Twitter if anyone used a fitness band to monitor their heart rate and sleep. Several people replied and one very kind person (who I had never even spoken to before) sent me the one they no longer use so I could try it out without having to buy one. Honestly, the chronic illness community is the kindest, most generous community ever!! Anyway, I've been wearing it for 3 nights now and it's interesting reading... the first 2 nights I got around half an hour of deep sleep, but last night I apparently got ZERO deep sleep. No wonder my brain can't function very well 😲 Before I got ill I was a very deep sleeper. I could sleep through anything (actually fell asleep during a hail storm whilst in a caravan as a kid 🤣). I always had trouble falling to sleep, but once I was gone that was it. And Tim used to say that if I could sleep I could deal with anything, and it was so true. If something knocked me, I'd sleep for 12-13 hours and be back to my old self in no time. Alas that has not been the case for a few years now. Having a baby who never slept didn't help 😕 but it's since getting ill with ME/CFS and Fibromyalgia that my sleep quality has been affected. I can feel it - no matter how long I sleep, I never feel refreshed. And gone are the days when I could sleep for a solid 12 hours to recover! But I knew I was getting some nights with 8-9 hours sleep (even if some nights were a lot less), so why wasn't I feeling refreshed. Um, this might be why... Any of my Spoonie friends on here track their sleep? Do you have a similar pattern? (I hasten to add I go to bed well before midnight, but it takes me an age to fall asleep still, no matter how knackered I am). ID: screenshots from the Mi Fit app. The first photo shows a weekly average of 26 minutes deep sleep, 8 hours 24 minutes light sleep, 0 minutes of REM sleep. The second photo shows last night's sleep of 0 minutes deep sleep, 8 hours 31 minutes light sleep. #SpoonieLife #SpoonieProblems #MECFS #CFSME #Fibromyalgia #ChronicIllness #InvisibleIllness #ButYouDontLookSick #DisabilityAwareness #ChronicMigraines

Today is Transgender Day of Visibility and the won

What a gloriously sunny day! I've been strugglin

What a gloriously sunny day! I've been struggling a lot this past week with dizziness and vertigo in the evenings 😥 but the day times have been pretty good still. I've been out in the garden a few times, mostly in my PJs, because that's what you do when you're chronically ill 😉 if the choice is between expending energy on dressing or getting into the garden, I know what I'm choosing! Anyway, today I've managed to pot up another try of seedlings, and am now resting on the garden sofa. You can see how many pots we have to fill (this isn't all of them!!) Over the weekend we planted a raspberry that grows in a pot, 36 strawberry plants, and 2 cherry trees (not pictured). We're just waiting for the blackberry plants that grow in hanging baskets to arrive now. The apple tree is growing well, and we need to pot up the olive trees and lemon tree into these huge black tubs we got off eBay. We popped the fern in one to give it more room, as it has grown so much. That was a 1st anniversary gift from my parents in 2011 and has moved house with us 3 times 😆 Finally, Tim tidied up the clematis and O found a "family reunion" of ladybirds. I didn't tell him what the top two were getting up to 🙈 How is your day going? ID: a series of photos showing: a black water tray with 20 green plant pots in it with seedlings of various kinds growing; a range of plants pots of different colours, shapes, and sizes sitting on a triangular patch of ground in the garden; a close of up new leaves and Buds on the apple tree; a raspberry plant in a pot; strawberry plants in a wooden raised bed; a large fern growing in a large, black pot; 2 olive trees in square, terracotta pots and a small lemon tree in a round, blue and white pot, beside a stack of 3 large black tubs; Tim, a white, non binary person with short, red hair crouching beside a fence; Amanda, a white woman with long, auburn hair, smiling at the camera; 7 ladybirds on a wooden post. #SpoonieLife #ButYouDontLookSick #MECFS #ChronicIllness #InvisibleIllness #ChronicMigraines #Anxiety #Fibromyalgia #EhlersDanlosSyndrome #HypermobilitySyndrome #ZebraStrong #GardenersOfInstagram

Rainbow! That is all I have to say 😂 (Actually

Rainbow! That is all I have to say 😂 (Actually it was a double rainbow, but the second one above it was too faint to capture on camera). ID: a photo taken from my front door, showing a rainbow against a grey, cloudy sky.

Please do not forget that many chronically ill and

Please do not forget that many chronically ill and disabled people have been #LeftOffTheList and remain unvaccinated, and yet 60% of Covid deaths last year were disabled people. The news today is that as supplies of the vaccine are dwindling, the over-50s need to be booking their appointments quickly before they rub out. But what about our vulnerable friends and family members who have been shielding for the past year, dealing with ableist crap for months that says their lives aren't valuable enough? We NEED to be putting pressure on the government and JCVI to prioritise those at risk ASAP. It cannot be left to those of us who are sick to do this, we're already fighting a losing battle, using up energy we do not have, trying to be added to the list as individuals. We need people outside of our community to fight for us too. Aren't we worth a few moments of your time? I'm going to pop a link to both a petition and how to find your MP's contact details in my bio. Please take time to sign the petition (remembering you need to click the confirmation email they send for your signature to be counted). Share it with your friends and family and ask them to sign it too. And consider writing to your MP to tell them that it is unacceptable to leave a whole community that has been disproportionately affected by the pandemic off the priority list! And check in with your chronically ill and disabled friends and family members. We are NOT okay. Let them talk, listen to them, offer to help in any way you can (e.g. I only got prioritised for the vaccine as a friend took over advocating for me with my GP). If anyone has any other ideas of ways to help, please do let me know. ID: a screenshot of a tweet from ITV News with the text, "Over-50s and those at risk should book their Covid-19 vaccines quickly before slots run out, the national medical director for the NHS has said". There is an image of a man wearing a brown turban and wearing a black and white camouflage print mask receiving a vaccine underneath the text. #SpoonieLife #SpoonieProblems #MECFS #CFSME #Fibromyalgia #ChronicIllness #InvisibleIllness #ButYouDontLookSick #DisabilityAwareness #DisabilityRights

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