spoonie life

Why do you have to be a heartbreaker…

~ somethinginthewayshemoves

I have an app that is designed to monitor symptoms of chronic illness. I wear a monitor on my wrist to check my heart rate, oxygen level, quality of sleep etc. It’s helpful. It warns me when my vital stats are out of sink. It records my heart rate variation, which is a big indicator of how well my body is coping. It has also been good to have an accurate idea of how much sleep I am getting (not much). You can rate symptoms every day and compare over time how various issues are affecting you. Overall, would recommend the app.

There’s just one thing that gets me down. The final thing that is recorded daily is ‘crash’. Basically, did I run out steam that day. Sadly, the answer is yes. Sometimes my energy tank is empty before reaching the dat’s destination. Other times pain takes me out. Others, still,I get too dizzy to continue. Lucky me, some days it’s a combination of all three. Of course this means that I rarely accomplish what I wanted (or needed) to. It frustrating and depressing and often really destructive. Constantly saying ‘I can’t’ wreaks havoc with every aspect of life. Be it personal or professional, I’m letting people down and it kills me. The guilt is enormous. As is the disappointment. I’m ambitious; my head is crammed with ideas and I had a very different life planned. Not being able to execute my plans in a grand or minute way is heartbreaking. 

That’s the thing about chronic illness, it breaks your heart and you just have to carry on. I’m continually having to find a different way to operate. My lists of can’ts is forever growing and changing, thus I must be flexible. I’m working with a different set of tools and I try to remember that. However, always ticking that box is a daily downer, which happens to be another intrinsic part of being chronically ill. It’s not often that the big things floor me. The huge issues pull all your focus into jus getting through it. It’s an hour by hour what needs to happen to come out the other side of this. There’s no time for dissecting. It’s the drip drip of daily symptoms that really torture me. The dreaded realisation that this thing is here to stay, that’s what fucks me up.

If you like what I do you can support me on Patreon.

Yellow Days…

~ somethinginthewayshemoves

I’m in the midst of mega bout of insomnia. I don’t love it. My brain is extra foggy and my productivity is questionable. However my ability to make many outfits from a few items of clothes remains stellar.

I like my clothes and I like having fun with them. It also makes my life easier if I just switch out a few bits rather than do a whole new outfit every day. January is cold and dark, so it needs an injection of colour. Enter bright yellow.

Dress – Simply Be Top – Taking Shape

I wanted to wear this sheer yellow top. I also wanted to comfy and cosy. I just layered it up. I started with this stretchy maxi. For me, leopard in a neutral, so I wear it with everything

Skirt – Lindy Bop Vest – M&S Cardi – Asos

When I needed to look a bit more put together I went for this graphic swing skirt. I love this skirt because it always makes me feel nice. It has a lovely swish to it. You can’t feel bad when you’re swishing around.

Dress – Pink Clove

Finally I combatted my insanely swollen Pcos tum with this bronze slip dress. It doesn’t put any pressure on my stomach. Comfort box ticked. I also love the clash of the metallic with the brights. Probably not for everyone, but a big yes for me.

I am a prolific outfit repeater. Clothes aren’t meant to be disposable. Doing a little mix & match is fun. It helps me get the most out of my wardrobe & saves me some spoons along the way. It’s win, win, win.

If you like what I do you can support me on Patreon.

Sunday Session

~ somethinginthewayshemoves

Poetry session that is. A little something that I keep going back and forwards on. Is it finished, is it any good ? Who knows, not me.

If this writer falls in love with you,

You’ll find yourself and a shortcut in the words I craft.

Maybe you’re lurking right here.

I’ll process you in type

Redraft until I’m clear what you meant

And what that means to me

Your flaws may darken some other character

But you’ll find my acceptance

Or not

in how I end the tale.

You’ll be certain of your impact

when you seep into my prose

I never know it, till I write it.

Then you’re set in stone.

If you like what I do you can support me on Patreon.

I walk the line…

~ somethinginthewayshemoves

I’ve needed my walking stick for quite a long time. Maybe 7 or 8 years and I’ve only just become properly comfortable with it. Using a mobility aid, especially earlier in life, is very strange. Everyone has an opinion. No one is shy about sharing it.

All the questions and reactions definitely had an impact on me. I feel self conscious more often than one might expect. I hate when strangers want my medical history. Staring makes me feel shit or angry; sometimes both. I am so fed up with being told I’m so young for a walking stick. I find it really difficult to need accommodations. I feel like a real pain in the arse more often than anyone else is bothered. Likewise, I’m sure I sense judgement more than it actually exists. All of which messes with the confidence.

Then of course there is a sense of loss. Accepting all the things you can no longer do is hard. I struggled on without a stick for longer than I should have because I had this ridiculous idea that I was giving in. I’ve always felt a certain amount of pressure to be stoic in the face of my health issues. A walking stick felt like capitulation. It also forced me across the line in my head of admitting that I was permanently disabled. Before that I was hanging on to the idea that my knee could get better. That was silly considering I’d been assured by more than one Dr that it absolutely would not. Degenerative conditions aren’t known for improvement.

All told, it’s been trickier than I’ve let on. I’ve finally found peace. How do I know? I have personalised my stick. The idea of making it in any way decorative used to make me feel queasy. I have concluded that my subconscious attached styling the stick with it being part of my identity. The way I dress has always reflected my personality. Until very recently including my walking stick in that was a frightening prospect.

Klimt Style

I’m over the line again. If I’m taking the bloody thing every where it might as well be a bit funky. Keep your eyes peeled for new incarnations. Knowing me, I’ll be mixing up it.

Moo Style

If you like what I do you can support me on Patreon.

Lies and Distractions…

~ somethinginthewayshemoves

Just when I thought Keir Starmer was the most rage inducing Labour politician, Tony Blair popped his head out of whatever luxury hole he currently resides in. He decided that we all needed to hear his ableist and stigmatising opinions.

This statement is vile in a number of ways. Blair’s wilful ignorance will contribute to rising disability hate. There is no excuse for someone in his position to feed the right wing ‘scrounger’ narrative. I feel compelled to clear some things up.

Self Diagnosis

There is one reason and one reason only that there has been a rise in ‘self diagnosis’. That is inability to access mental health services. NHS waiting lists are long and actually getting a referral in the first place is laborious. Many people are instead directed to online resources and/or NHS helplines. Those who make it onto a waiting list may still have battles ahead. Most patients are offered a short course of CBT*, a modality that is not suitable for everyone and is often counterproductive. Those struggling to deal with mental illness are not researching symptoms and looking for a diagnosis for the hell of it. They do so because they are desperate. They are not adequately supported by professionals and are driven to find their own answers.

Disability Benefits Bill

Let me be clear, no one without an official diagnosis is receiving disability benefits. Successfully applying for these benefits (PIP, DLA, ESA or ADP**) is an incredibly onerous endeavour. The process requires extensive disclosures, evidence and the support of medical professionals. The system already purposely discriminates against those with mental illness. The criteria are designed to exclude symptoms and difficulties experienced by those with common mental illness like depression or anxiety. Many people with a professional diagnosis and treatment input from psychiatric services are denied these benefits. There is zero chance of someone just saying they have a condition and being approved.

Gaming the System

Implying that large numbers of people are illegitimately claiming benefits is dangerous and inaccurate. Fraud rates for disability benefits are very low. In fact, there is a higher percentage of claimants being underpaid. The application process is exhaustive. It is intentionally stressful and intimidating. Assessors frequently over ride expert medical opinion despite being unqualified to evaluate the conditions claimants have. Vast numbers of claims are rejected only to be overturned on appeal. Contrary to the current narrative, disabled people are often denied support they are entitled to.

***

Scapegoats

Disabled people make great scapegoats. We are one of the most vulnerable demographics. Often with little emotional or physical resources to fight the bureaucracy. We have been subject to harsh conditions since the beginning of austerity. Research from the University of York found that the impact of cuts to social & healthcare were linked to over 57,000 more deaths than expected between 2010 – 2014 alone. The perception that disability benefits are easily scammed and so costly as to damage the economy further endangers us. In 2023/2004 multiple regions in the UK recorded their highest number of disability hate crimes. Being scapegoated by those in positions of power is nothing new. The Tories have been using us as a distraction from their disastrous policies and corruption for years. To have Labour join in is a tough blow. I didn’t have high hopes for this government, but this page from the Conservative playbook is still alarming. Yes, I know that Blair is not a member of our government, but he does still hold sway within the party. His comments will absolutely be associated with Labour.

Disabled people are not to blame for the crisis in our health service. The UK has been experiencing a swell in both physical and mental illness for a number of years. This is as a result of deteriorating public services and a drop in quality of life. The pandemic played a part, but the biggest culprits are our political leaders. It disgusting that the trend of pointing the finger at a vulnerable group to distract from the reality of governmental failures is set to continue.

* Cognitive Behaviour Therapy

** Personal Independence Payment. Disability Living Allowance. Employment and Support Allowance. Adult Disability Payment.

*** Department of Works & Pensions

If you like what I do you can support me on Patreon.

Jingle the shingles…

~ somethinginthewayshemoves

My absence has continued. I know, I’m full of excuses. I’m apologise. I just keep getting ill or my meds get messed up or the someone in the world does another really fucked up thing. Anyway, this time it’s shingles. Again.

Yup, I have shingles for the third time in 2yrs. I feel a little bit cursed, but my dr assure me it’s actually my immune system and stress that are the culprits. Oh and being a woman; another perk of my sex. We caught it quick, anti virals galore with a bit of luck it won’t get too horrendous. I feel shitty, but it’s manageable. In amongst all my of body’s fuckwittery there has also been a touch of writers block and a general lack of motivation. What I can offer you is some mini reviews of books that have been keeping company.

We’ll start with good, The Alienist by Caleb Carr. This was re read, but the first read was so long ago that I had forgotten most of the details. I enjoyed it so much that I dove straight into the next book in the series, The Angel of Darkness. Both are set in 1890’s NYC. They follow a group of unofficial detectives on the trail of horrific serial killers. They’re led by Dr Kreisler, a pioneering psychologist who uses his unorthodox theories to capture their foe. The rest of the team is comprised of journalist John Moore, trailblazing police secretary Sara Howard and experts in new detective & forensic techniques the Issacson brothers. I love the way emerging ideas that are now commonplace are intertwined throughout the story. They’re classic crime thrillers with intriguing characters. Incredibly engaging, highly recommend.

I am less effusive about Love Untold by Ruth Jones. The book follows four generations of women in a family. It is an interesting story, but not well executed. Some of the character flaws make it difficult to like them, which impacts the books resolution. I also find the plot reveals to be clunky. The book meanders for chapters and then has huge plot dumps. It felt very unsatisfying.

My sister lent me Three Hours by Rosamund Lipton. It’s not my usual thing, but I enjoyed it. Set during a school shooting and told from various perspectives. It is a high tension page turner with some nice twists. The characters are really well developed; the other does a fantastic job of making you care about them.

I hope to regain my mojo very soon. I am doing my best to get into the Christmas spirit. Fingers crossed!

If you like what I do you can support me here or on Patreon.

October skies…

~ somethinginthewayshemoves

Oh, I have so much to say. Labour’s cowardly first 100 days have rendered me overwhelmed; fat phobic announcements, abandoning people they’re supposed to fight for, refusal to stand up to Isreal et al. I am working on pieces expressing how I feel about all of that. In the meantime, I am giving you a little round up of my more light hearted goings on. I just didn’t anyone to think I was ignoring the ongoing horrors.

Thursday night dinners with my Brother & his boys are always fun. I love catching up on what my nephews have been getting up to. Last week I had these adorable decorate yourself Halloween biscuits for them and they told me about their spooky costume plans. For this little outing I wore the dress that my sister got me for my birthday. It’s the perfect autumn dress. I love the soft waffle fabric & the long fluted sleeves. I especially enjoy how comfy it is whilst also making me va va voom.

Dress – ASOS
Cookies – Graceful Favours

Last weekend I finally got out to see my amazing friend Lisa. We had an in depth catch up and her 12 yr old son declared me still cool. I consider this a huge win. A weekend on the east coast was lovely. Good friends, good food and even the train didn’t stress me out too much.

Getting back to the Halloween theme, I did some spooky crafts with more niblings this week. It’s school holidays up here and the weather hasn’t been playing ball. They all loved the pumpkin headbands & my big niece also made a beautiful wreath for her bedroom door. I love doing things like this with the wee ones. Watching their creativity and excitement always makes me smile.

Finally, I rounded up the October week with a big adventure. We set off at the crack of dawn yesterday to drive up to Landmark Adventure Park. It’s a forest adventure park near Aviemore and it’s absolutely with the trip. My sis & her big boy tackled all the climbing, water slides & trampolining in the sky. Myself & the tiny boy watched from one of many comfortable benches. Don’t worry though, there were activities I could manage including a labyrinth & meeting my favourite dinosaur. There is a fair bit of walking involved, but plentiful places to sit and rest along the way. We stayed right up until closing time and arrived home exhausted last night!

I recognise how privileged I am to be able to spend a week having fun with my friends and family. All of my loved ones are safe, my niblings are able to enjoy their childhoods free from peril. The people of Gaza are denied that. I think it is incumbent upon us to remember how lucky we are and do whatever we can to help. If you are able please make a donation to help Haitham and his family reach safety.

I’ve got a brand new combine harvester…

~ somethinginthewayshemoves

It’s another Bank Holiday weekend. The kids had a few days off school and the weather looked promising. Obviously we had to go on some adventures.

On Friday I hit the Museum of Rural Life with my bestie and niblings. They loved checking out the giant vintage machinery and learning all about the local wildlife. My highlight was the tractor ride and baby cows. The kids seemed to enjoy everything. It was a warm dry day when he set out, so I braved a summery outfit. It did start to rain about ten mins before home time, but we managed not to get too soaked.

Top – Taking Shape Skort – Simply Be Kimono – Simply Be

Saturday was sister & the boy time. We headed to the Riverside Museum. We hadn’t been here for a few years and there have been loads of changes. All positive. The boy loved it. Like me, he was a fan of the old street. I was also happy to discover that the museum had those cool little portable chairs; allowing me to sit whenever I needed to. Two days in a row is a lot for me, so I attempted to put a little pep in my step with an excellent outfit. I think this one was a winner.

Dress – M&S Petticoat – Lindy Bop

I had an amazing time with the little ones, but unfortunately my body rebelled on Sunday. Along with the usual pain & fatigue there was much vomiting. I had a seriously rough night and today I am utterly wiped out. Bronan & I are having rest. Hope your holiday weekend was just as fun with fewer negative repercussions.

If you like what I do you can support me here or on Patreon

Mad Woman…

~ somethinginthewayshemoves

As predicted last week’s level of activity resulted in this week’s inactivity. I’ve been sore and exhausted. Tedious, but expected. The thing that has really been bothering me is my foul mood.

I’m extremely pissed off. Don’t ask me why because I have no idea. No one has done anything egregious. I have experienced no great wrong. Yet, each day I wake up feeling grumpier than the last. My baseline emotion is crabby.

The slightest provocation sends my simmering frustration to bubbling over. I lose a page in a book, spill my tea, forget a detail and I’m furious. My wrath is not solely directed inwards, everyone & everything annoys me. For no reason. I know my feelings are unreasonable. Consequently, it is best for me to be where others are not. I doubt all this seclusion is helpful. Turning all this negativity on myself is unlikely to produce much joy.

I’m at a loss for a solution. I’m accustomed to feeling sad or scared, but this aimless anger is uniquely discomforting. I hope it will pass. Perhaps when I’m less fatigued my mood will lift. Maybe the state of the world is getting to me. Or just life itself. Whatever the cause, I do not love it.

If you like what I do you can support me here or on Patreon.

A week in the life…

~ somethinginthewayshemoves

Last week was hectic. I packed in way more than was sensible. So, of course I’m entirely out of spoons now. It was worth it, though. I had some productive meetings and lovely time with people I care about.

First there was the little matter of tests and seeing some consultants. Unfortunately this involved pretty much an entire day in hospital, mostly waiting. Listen, I am very grateful for our NHS, I doubt I’d still be here without it. However, watching the impact of Tory cuts over the last decade is deeply frightening. Sickness, ageing accidents will touch all of our lives. We need a functioning NHS, it is a miraculous institution. Please keep that in mind when you are casting your votes.

T-Shirt – Primark Cardigan – Curve Soul Mask – Topple & Burn

Tuesday involved meetings about an exciting opportunity, which I feel good about. I long ago abandoned cosplaying as a suit. I feel fake & uncomfortable in that get up. I don’t present my best self that way. Thus, I turn up as me and I find that gets the best results.

Skirt – Gift

The following day was all Bronan. We went for his bloods & then a had bit of a wild goose chase for his insulin. Fridge malfunctions caused some problems, but we got there in the end. Bronan was very grumpy about his extended time in his carrier, but once home he got thoroughly pampered.

By Thursday it was time for a reward. I put on a pretty dress and had a catch up with my very favourite man. We went to Brutti Compadres. I love it there because the have the best tapas and Rosè sangria. Plus amazing lighting that makes it feel like you’re bathed in sun. It was so nice to forget about the miserable Scottish winter. Even nicer to bask in the company of someone delightful.

Dress – Forever 21 Shrug – H&M Tights – Snag

I finished the week in the best way possible; surrounded by niblings. I spent the day playing with Batman and baby bunnies, looking up cheeky animals on my phone and finding out about the latest happenings at school. I also had a good gab with their Mamma. Friday done right.

Trousers – Glamour @ Asos Cardigan – Handmade

If you like what I do you can support me here or on Patreon.