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Faith & Spirituality• Politics

Calling UK Christians – We Need To Do Better!

People at a Black Lives Matter protest, wearing face masks due to Covid-19, and holding signs which say "if you're not angry then you're not listening" and "black lives matter"

As Christians we are called to stand with the oppressed and to demand social justice, and yet there seems to be a distinct lack of this form UK churches as a whole right now. We need to do so much better.…

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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 👩🏻‍💻

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.

Now that I have your attention 😂 First of all,

Now that I have your attention 😂 First of all, thank you to everyone who commented on my last post. I appreciated every response and didn’t want to leave you hanging. But I’m still in the migraine from hell. I’ve come to realise that this is what triggered the intense vertigo 12 days ago, the pain just took longer to kick in. And I feel utterly beaten. It’s been a while body thing. But I’m determined to get back on track, as prior to this I *had* been having better days. I have a range of medications (some I have to take daily, some I have to monitor to make sure I don’t take too many and cause a medication over sure headache. What a cruel irony! So I’ve been looking at others ways to help myself beyond the meds that only do so much. The first is the fetching pink item Tim bought me. It has a gel inside that stays cool for ages and blocks out light whilst soothing my painful eyes and sinuses. How cool is that? I have restarted my daily vitamin B2, CoQ10 and magnesium (recommended by Neurologist) and added in Gingko Biloba, Turneric, and 5HTP, plus omega oils, all through research and contact with herbalists I know. I’ve bought @thedizzycook book because it is written specifically by someone who knows the hell of vestibular migraines and gives me hope. It will be a while before I can make any of the meals, but it taught me how many triggers I still had in my diet (seriously, who knew pineapple and dates can be triggers?) as well as informing me of the hidden names for MSG. I’m living on porridge for breakfast, fruit and seed butters (no nuts!), and roasted or steamed veg mostly. Keeping it simple for a while until I feel more able to do more. And I’m listening to audiobooks a lot. Mostly ones I know and I don’t have to concentrate on too much, but I also loaded up my Audible in the £3 sale and found a fun sci-fi twist in Cinderella on @listeningbooks. This means I’m not having to focus on a screen or even words on a page and can truly rest. I’m also thinking I need to step back from social media a bit. I’m a true empathy, I take on way too much of the pain out there, and my nervous system can’t take it. It feels like my brain is on fire (cont. ⬇️)

SAD | Today I feel terribly sad. My head hurts and

SAD | Today I feel terribly sad. My head hurts and nothing is touching it. My head also feels woozy and that freaks me out. Sitting upright is a challenge. And I’m feeling utterly defeated. It’s hard to believe that it was only a couple of weeks ago that I was gladly sharing that even though I was still having lots of bad days I was having good days too. Because the past 10 days have been non-stop hell. I’ve barely left my bed. Sure I’ve had the odd good moment, but 90% of the time it’s been awful. And it feels like there is no end in sight. I’m at almost the heighest dose for my migraine preventative. I’ve restarted the vitamins that are supposed to help and added in some other supplements. I’ve tried to actively rest. I’ve looked again at the migraine diets and realised that so many of my go-to treats (e.g. dates and pineapple) are potential triggers! As are avocados, most beans, and so many other healthy foods. It feels like nothing is safe at this point. And I don’t know if I should consider having another Mirena fitted. I had it removed as I was having 2- week long migraines every month. But I think I get them even more days now, along with cramps which is a worry in case my Endo decides to make a return. I’m having blood tests and an eye test on Monday, but expect them all to come back normal. They usually do. And then the week after I have to go to the breast clinic because why not throw in an extra concern (GP thinks it’s a cyst, I’m not worried, but dear lord I’m fed up of new symptoms turning up). Everything hurts and I am so goddamn tired of it all. I want to feel at least semi-well and enjoy spending some time with my family. Instead I’m stuck in bed, alone because I can’t cope with the stimuli of people talking to me, we’ve got a house move hanging over us, and I just feel so incredibly sad that this is my life. It’s so unfair, for me and my family. Especially for O who misses out on having a mum who can do things with him. And for Tim who loses his wife as a partner and has to care for her instead. Today I just feel defeated.

The spider in our airing cupboard has had a whole

The spider in our airing cupboard has had a whole brood of baby spiders 🕷 😱 Tim joked he was going to get a flame thrower, and O is very cross about this. He told Tim to just take them outside the house. Bless him 😂

Can we just talk about this for a minute? It has b

Can we just talk about this for a minute? It has been 20 months since my PIP appeal was received. 20 MONTHS! Now I get that Covid-19 will have delayed things a bit, but my appeal was received a good year and a half before this pandemic! And that was after I’d spent about 6 months in the process of applying, having my assessment, filing for mandatory reconsideration, and then filling in an appeal form. 3 lots of form filling and a face-to-face assessment, where the assessor cherry picked what to comment on and chose to downright ignore other things or outright lie (“applicant shows no signs of instability” the day after I fell in the bathroom and had a massive bruise on my arm!!) It wasn’t even the first time I’d tried to apply. I’d been through it the year before but didn’t feel well enough to appeal. Did you hear that? I didn’t feel well enough to appeal! This is what our country’s benefit system does to those of us who are ill and disabled. And it isn’t right! We’ve been to court for Tim’s ESA and PIP tribunals (and won both). I was awarded ESA thankfully, but not PIP. The system that is supposed to support us when we need it has made us more ill with the stress of fighting for the support we need. And I’ve been waiting 20 MONTHS for a tribunal date, and I haven’t heard a peep from anyone in that time. Just a tracking number on a website. And today that has really pissed me off. Do you know why we need things like PIP? Because being ill costs us money! We have to buy food for convenience and ease of cooking, rather than getting the best deals. We have to buy for special dietary needs. We need petrol to get around as we can’t walk as far as other people. We have appointments we have to get to. Some of us can’t work and so can’t earn a living, as much as we wish we could. Being ill is expensive, and that’s not our fault! I don’t know if I need to be chasing someone up about my tribunal date. Have I got lost in the system? Is this a typical waiting time nowadays?
Seriously, we need to be talking about this. Because it isn’t fair, and those of us who need the help are too damn ill to fight for it!

Tim just brought me a little posy of herbs from ou

Tim just brought me a little posy of herbs from our garden. All our herbs are grown in pots, and they smell divine. This particular posy has peppermint, marjoram, sage, and lavender in it 😊

Hot days call for water fights. We’ve had water

Hot days call for water fights. We’ve had water balloons, a three way water gun fight, and now these two are continuing with the hose and a water gun. O took great delight in absolutely soaking me. These hot days play havoc with my symptoms, and I’ve been in bed most of the past week thanks to the vertigo flare that started last Thursday. But after a couple of days of very intentional resting I managed to stand upright long enough to join in and enjoy a bit of fun.
I’m wiped out and am back to bed now, but this was well worth it. I spend a lot of my time feeling so awfully guilty about how many times I have to say no to O 😔 and today I almost cried as I told Tim I feel like I need a good 2-3 weeks of doing nothing but rest, but that isn’t possible because I’m still a parent and also I don’t like putting upon him when he already does so much. I’m torn between what my body desperately needs to reduce my symptoms and what I have to do as a parent to a child with ASD and ADHD and with a husband who is also ill. Add in the lockdown and moving home and it’s a recipe for disaster. My body is literally screaming for sustained rest. And I desperately want to give it that because I’m so fed up of this dizziness and vertigo. But what can I do? All of this to say that life is damn hard right now, but I got 10 minutes of joy with my family today and it was the best thing in the world. Not quite what @thehealthsessions meant by hydrotherapy today 😂 but it’s my version of it 😉

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