Chronic Illness

Watching the clothes…

~ somethinginthewayshemoves

Would you like to see some things I have been wearing lately? Excellent because that’s exactly what this blog is about. It’s all everyday fashion. I spend a lot of time with little people and in Dr’s waiting rooms; so comfort is paramount.

That doesn’t mean I don’t want to look cool. The keys to my winter 23/24 looks are layering & my Air Cloudies. I didn’t really want these boots, but they might be the best thing I have ever bought. Waterproof, fleece lined and cushioned soles. They are actually like walking on clouds. Also, you can fling them in the washing machine. Spoonie friends, you need these.

Dress – Primark T-Shirt – Delicious Monster Tea Cardigan – Curve Soul*

On the layering front, I like wearing my summer dresses with extras. Stick some tights on, tie up a t shirt & top with a cardi. You’re ready to face the Scottish winter.

This t shirt was a Xmas gift from my sister. I felt a bit teary when I opened it because it highlights how well she knows me. If you don’t want Joni Mitchell lyrics on your chest, fear not they are custom.

T- Shirt – Delicious Monster Tea

I love little floppy mini skirts, but since I cannot gracefully sit or bend, they would definitely result in a lot of flashing. Hence, this skort is one of my fav pieces. All the cuteness of a wee a skirt, with shorts built in to save my blushes. Tights & fluffy cardi make this winter proof. When it comes to tights, it’s always snags. They fit, they don’t fall down & I don’t ladder them on the first wear.

Skort – Simply Be T-Shirt – Curated By Girls Cardigan – ASOS Curve Tights – Snag

I’m 100% an outfit repeater. I don’t really understand the point of not being. I buy clothes that I love and feel good in. Why wouldn’t I want to repeat that experience? Most weeks involve repeats. This one was no different. I swapped my cardigan for a jumper and was good to go again.

Jumper – Curve Soul* Boots – Air Cloudies

Finally, I have today’s look. I fell in love with this jumpsuit the minute I saw it. I adore the zip and contrast stitching. I bought two sizes and even the bigger feels a tiny bit short in the body. Definitely one to size up on. If you have a longer torso, it might not be a winner.

Jumpsuit – Simply Be Tote Bag – Banksy Exhibit

I slipped on another Xmas gift today. This one is from my bestie & sums me pretty well!

Badge – 2 Little Boys

* Gifted. Use Kerr25 for 25% off at Curve Soul.

Ins & Outs…

~ somethinginthewayshemoves

I haven’t made New Year’s resolutions since I was a child. At first glance I thought the In & Out trend was just a rebranding. However, on further investigation I have decided that I like this less momentous approach. Instead of massive declarations, we’re just reassessing what everyday things serve us well. Less changing who you are & more smoothing life’s aggravating edges. I’m willing to give it a go.

In

Swimming

More of it. I love swimming. I feel less pain in the water. I can whizz up and down in a manner I haven’t done on land in years. I enjoy it. I don’t know why I so frequently let life get in the way, no more. I’m carving out time every week to indulge in a dip.

Do it for fun.

I am pretty useless at crafty things. I do however enjoy the process. I like pottery and painting and making my own flowery bits. I’m often put off by the fact that the finished product is not grade A. Bugger that, why relinquish pleasure because I’m not good at it? No one is good at everything. Just for the fun it is good enough reason.

Currently reading

I like seeing what others are reading & enjoying. I’m often asked which books are on my shelves. Unfortunately I forget to share as I’m reading. Then when I remember, I have dozens of books I haven’t talked about. This year I will endeavour to share my books as I devour them.

Have a little faith

In my own talent. I know I can write. People pay for my words, lots of folk read this blog, my work has been praised and published for years. I know I can write. Yet, the imposter syndrome is real. Doubt is always creeping in, I drag my feet on some opportunities because I’m not convinced I’m good enough. It has to stop. I’m 43yrs old, I can do this.

Out

Matching Socks

I have various singleton socks. Perfectly nice, soft & cosy socks. Bugger it, I’m pairing up the odd ones and wearing them. No one with any sense cares a jot.

Guilt

I have a long established guilt issue. I can & will feel guilty about almost anything. Given that I have plenty of real things to feel horribly guilty about, I am going to try my hardest to let the insignificant things slide. There are only so many hours in the day, it does no one any good for me to spend most of them worrying about what is my fault.

Explaining

It’s exhausting and most the time it’s no one’s business. I’m no longer explaining why I need to know if there are seats or stairs. Folk can just answer the question. I ask politely, it’s straightforward information, just say yes or no. Randoms don’t need to know what pill I’m taking, why I’m vegan, why I fainted or any number of other things. Curiosity killed the cat and constant explaining knackered his Mother.

Making exceptions

This is the big one. There are one or two people in my life from whom I accept less. I love them, I know them inside out & I want them in my life. As a result I tolerate certain things from them that I wouldn’t from anyone else. Mostly this is absolutely fine. I’m not talking about horrid or cruel behaviour. Just the odd less than ideal lapse. Here’s the rub, sometimes those lapses hurt. I’ve decided it’s time I shift things away from swallowing that hurt. Everyone deserves to their have effort & care reciprocated. I must stop making exceptions. When annoying becomes hurtful, it is time to speak up.

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

And what have we done?

~ somethinginthewayshemoves

The close of 2023 is fast approaching. Like many people, year end has me in a reflective mood. I’ve read a couple of year in reviews, both personal & global. I even had a look at my own from last year. All of which left me less than cheery.

I realised it has been a year of horror for the world. A year of underwhelming achievement for me. Neither elevates my mood. Given just how brutal & cruel events have been my own struggles pale. I still can’t quite shake the societal pressure to produce.

My health has been a shit show this year. That has greatly impacted my professional output. It has in fact resulted in subpar scores across the board. My house is a mess, my social life is decimated & my very ability to stay upright has been comprised. I don’t feel like a ‘productive member of society’. I’ve had to lean on friends & family more than I like and my ‘23 goals mostly remain unattained. I haven’t been able to attend protests or pull my weight on issues that desperately matter. There hasn’t been much to feel proud of.

I’m sure I am not alone in this feeling. It’s a tough time for many people. Maybe it is ok if we’re just getting by. Worth is not measured in such narrow parameters. Not giving up has value. Engaging and caring about the world matters. It can be difficult to really believe that when bombarded by hustle culture.

I get it. Intellectually I know that human merit isn’t about hours worked or pounds made. There is though, a part of me that feels inadequate when I can’t work. I feel ashamed of the overflowing washing basket and unwashed dishes. These feelings aren’t doing me or anyone else any good. I didn’t choose to be chronically ill and I am trying my best.

All of this to say, if you’re toting up your year and feel the total wanting; think again. You got up every day and did what you could. You’ve made a difference in lots of ways that you might not even realise. Small kindnesses, commiserations & making friends laugh. Perhaps even a smile you gave to a stranger in the street. People love you. You are appreciated. You made it through whatever struggles weighed you down. I did too. Maybe that is enough.

If you enjoy my content you can support me here or on Patreon.

Don’t Ask, Don’t Assume…

~ somethinginthewayshemoves

The government has launched yet another useless campaign. This time they claim the aim is empowering & dispelling myths about disabled people.

In my opinion Ask Don’t Assume is a big fail. I don’t seem to be alone in that opinion. Many disabled people agree that encouraging the public at large to ask us whatever questions into pop their heads is a terrible idea. The government claim to have done extensive research. According to Minister for Disabled People, Health & Work, Tom Pursglove that ‘extensive research was with 500+ people with lived experience of disability. To be honest I’m surprised they found 500 people who thought this was a good campaign. However, with 6.3 million people currently entitled to disability benefits*, consulting 500 does not qualify as extensive.

One of the problems I encounter as a disabled/chronically ill person is maintaining boundaries. So many strangers don’t think twice of asking personal & invasive questions. Almost every time I leave the house someone will ask ‘what’s wrong with you’. In recent years Tory policies regarding disability benefits have led to more people holding hostile views. Disabled people are often viewed with suspicion, which leads to strangers demanding information from me. People who know nothing about me or my circumstances feel entitled to my private medical information just incase I am somehow ‘scrounging’ benefits. A government campaign with the tagline, Ask Don’t Assume, legitimatises this behaviour.

Further, a lot of the campaign materials include toxic positivity/inspiration porn content. I watched a video with a woman describing her disability as a strength and as something that ‘can give back’. Everyone is of course able to decide what disability means to them, but none of this resonates with me. My disabilities make my life much harder. There are lots of thing I simply can not do. Even the most mundane of daily tasks are negatively impacted by my conditions. That doesn’t feel like a strength to me. I also cannot comprehend how a disability ‘gives back’. Do my defective knees perform acts of service? Or is my daily fainting somehow contributing to a greater good? If so, I haven’t seen the evidence or benefit.

I do not believe that this narrative is advantageous to the disabled community. Our value is not tied up in how well we overcome our disabilities. Disabled & sick people require accommodations. There will always be things we cannot do without assistance or at all. Our bodies do not function like the average person. There is no amount of determination or strength that can change that. The onus should not be on us to make abled bodied people feel comfortable with that. Disabled people should not have to be grateful, inspirational or make themselves ill trying to prove their worth.

There have also been calls for our government to address their obvious failings with regards to disability rights. The Tories have spent over a decade attacking disabled people. Their continued battle to deprive people of vital benefits has done untold harm. Purposely making it incredibly difficult for those with mental illness to qualify for support is intolerable. Their persistent refusal to acknowledge UN reports on the circumstances of disabled people in the UK. Along with long-standing inequalities such as disabled people being unable to live with a partner or marry without losing disability benefits. There are many urgent issues this government could address if they truly wanted to empower disabled people. This is very poorly executed lip service.

If someone wants to share about themselves, they will do so. If a person requires your assistance, they will request it. There are very few instances in which is imperative to know the details of someone’s disability. The exceptions, health & safety in the workplace, safely accessing facilities and so on can all be handled discretely & professionally. There is never a reason to intrude on a disabled person’s privacy. This campaign does the opposite of its stated objectives. Considering it is a Conservative initiative, no one is surprised.

* UK Disability Statistics Feb 2023.

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

Sweet Little Mystery…

~ somethinginthewayshemoves

Regular readers might have noticed the downturn in my long form content. There’s a very simple reason for that, chronic illness.

This year has been one thing after another. The last few months in particular have been gruelling. The problem with having chronic conditions is you often find yourself fire fighting. There are so many symptoms, it is impossible to properly deal with everything. You end up addressing the most problematic at any one time. Plus of course it can be hard to get Drs to really investigate many issues. Often they’ll just chalk up to an already diagnosed illness. Sometimes they’ll try to mitigate that symptom & others you are basically told you’ll have to live with it. I always have questions that aren’t answered. Unfortunately I run out of steam to pursue them. When you are always tired & in pain you must pick your battles.

Of course being fat complicates matters. The first response more is usually something about losing weight or questioning my diet. When I fight against that there will be what I call ‘subterfuge tests’. I’ve had more fasting bloods & cholesterol tests than anyone ever needs. After years of Drs refusing to believe anything I tell them, I find it is easier to just go for the bloods & prove myself right.

The last few months have been relentlessly hard. Pain has been consistently more severe. Digestive tract refuses to behave. I’m fainting daily. I’ve had the worst bout of insomnia of recent years, but even when my body eventually gives into the exhaustion; I awake feeling just as tired. Brain fog has punctured my old articulacy. I struggle for words in everyday conversation. I have lists & notes for every little thing. If it isn’t written down, it will never happen. My skin itches, my head hurts, alarming bunches of hair are falling out, I’m breathless, nauseous & anxious. ALL THE TIME.

I have suspected that something was going for a while. I can’t explain except to say that my body didn’t feel like it belonged to me. These ailments have been breaching my outer limits. So, I had some blood tests that revealed elevated numbers. My Gp wanted to test again a few weeks later to rule out a random blip. They came back slightly higher. A new medical mystery was born.

Three blood test bottles

The high numbers are related to my liver function. There isn’t an obvious reason for my liver to be pissed off. I hardly ever drink alcohol, I don’t eat meat or dairy, no signs of diabetes. It doesn’t make much sense. Possible culprits include my missing gallbladder & bile duct complications, covid & no doubt my weight will become a factor too. I await scans & next steps.

All this to say, I am currently operating on a wing & prayer. And I’m not even religious.

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

Care a little…

~ somethinginthewayshemoves

About a week ago I had a telephone appointment with one of the Gps from my practice. I haven’t had much interaction with this Dr and it did not go well.

After a brief conversation about the symptoms concerning me, she suggested we start with some basic tests and swiftly moved on to checking my weight. I asked why she wanted my weight and explained if not medically necessary I did not want to be weighed. The Dr replied that she would like to calculate my BMI. I told the Dr that BMI wasn’t scientifically sound and I didn’t want to discuss it. I’m sure you can guess how the appointment went from there.

It was the usual gaslighting and time wasting. According to the GP she would be negligent if she did not assess my BMI. I reiterated my objections to her weight focused approach, all of which were dismissed. The appointment was taken up with this back & forth instead of actually discussing my actual problems. I have informed various practitioners at the surgery about my preferences with regards to being weighed, discussing weight loss etc. I have disclosed my history of disordered eating and how intentional weight loss is detrimental to my mental health. I’ve also discussed the harm caused to me by weight stigma, which includes near fatal misdiagnosis and long term health implications. All of these conversations should be recorded in my notes as per my request. Yet still, I find myself regularly having these interactions whilst trying to access medical care.

A blue bathroom scale that reads doesn’t matter

Given our in-depth conversation about why I wouldn’t be weighed without solid medical reason, I had hoped that might be the end of it. I was fairly surprised when I saw the nurse yesterday for bloods and she asked me to ‘hop on the scale’. I gave her my standard, I don’t do weighing unless medically necessary. The nurse then told me that the Dr had specifically noted that she must makes sure she weighs me. I was internally furious, but calmly explained to her that I had already told the Dr I wouldn’t be doing that. Luckily, she left at that.

I am chronically ill. I have lots of interactions with medical folk. I am flat out exhausted before we get to the fat phobia. I often don’t have the fight in me, but I’m forced into battle. There is no let up. If I don’t assert myself I will not get the care I need. I know from bitter experience just how dangerous that is. The problem remains that even when I do stand my ground, the medical profession is want to shove back. Either I am entirely ignored or I am labelled difficult. It’s endless and wearing.

The persistence of these attitudes feels like a war of attrition on the patient side. It’s draining. No matter how many times I make my wishes known, they are ignored. Coming to appointments armed with facts, evidence and clear description of how this weight stigma harms me, makes no difference. Today was a classic example of this. I wasted my time discussing very personal & traumatic experiences with a Dr in order to justify declining to be weighed. She simply set it all aside and took action that she knew would harm me. I shouldn’t have to justify not wanting to do things that are not necessary or helpful to my treatment in the first place. However, it is clear regardless of how much time & energy I invest in explaining why intentional weight loss talk is detrimental to me, medical professionals will not listen. The stress of always having to be prepared for a fight is immense.

I will of course take steps to address this latest event with my practice. I can only hope they take action to protect me. It won’t bring the discussion of my weight to a close. There will still be another specialist, nurse or hospital consultant who views me as first fat and second a person in need of medical care. Right now the knowledge of that is way too overwhelming.

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

How I’m feeling now…

~ somethinginthewayshemoves

I have been somewhat absent here. Anxiety has engulfed me. There is a very specific reason for the anxiety, unfortunately it is not a thing that I control or fix.

Theoretically being able to pinpoint the trigger means it I should have a definite end point. However, since resolution is not within power the uncertainty persists. I can’t even begin to address the issue until next week, which leaves me endlessly playing out scenarios in my head. It is sickeningly stressful. The fear that has been sitting on my chest for a week feels like it’s attempting to climb up & grab for my throat.

I’ve tried every calming weapon in my arsenal to little effect. When I managed to leave the house every sensation was painfully amplified. I was both submerged in sound & every noise was taking place inside my body. Likewise, every living being in my approximate vicinity seemed claustrophobically close. I felt dangerously on display & incapable of making a quick retreat. Sitting still was impossible, but moving left me gasping for breath. I couldn’t decipher if it was Pots or anxiety related. The more I worried about it, the less able I was to catch my breath.

Outside was brutal. Inside is merely a more measured torment. The slow drip of water torture rather than the ripping out of finger nails. I remain on high alert. For what I don’t know; there is no physical threat. My mind stubbornly refuses to divert course. If I pull it astray thoughts quickly revert to dissecting worse case situations. This is very much a wait and see kind of issue. Strategising & replaying every possible outcome cannot help me.

Still, I lie awake at night with my heart pounding. When I finally dip into sleep my subconscious conjures catastrophes that aren’t even feasible. I awake in a panic that fades to dread. An awful gnawing fear the dark summons in the certain absence of slumber. I never feel more inclined to screaming than when imprisoned in insomnia. 3am worries are no one’s friend.

Of course I reassure myself that I can survive subpar outcomes. I do know that this extreme horror level of anxiety will not last forever. I’ve coped with worse & there will be much better days. My mind simply doesn’t care. We’re hyped up to life or death threat defence and it has no intention backing down. If I had a bunker, I would be in it.

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

Double Trouble…

~ somethinginthewayshemoves

I’ve had some good Auntie time this week. Since my non auntie time has been frustrating and energy sapping I did sneaky little outfit repurpose.

My littlest niblings turned two this week, which blows my mind. I still call them the babies, but these little rascals are just determined to keep growing fast! Their birthday party was gorgeous. Fab decorations, adorable little ones, loads of presents and even a special vegan cupcake for me.

Gold letter Balloons spelling out two wild and a zebra balloon.

The sun was actually shining, so I wore a very cute linen dress with my fav t shirt knotted on top. The dress has pockets, always a plus and perfect for all the things little ones want are constantly handing me. T shirt is a Christmas pressie from the birthday babes and their big sister. I adore it. I will check with their Mummy where they got it from because it fits so well. I often have to cut the necks in t shirts as I don’t like how they sit, but this one is perfect.

ly is standing in her living room with one hand her hip holding a walking stick. She is wearing a blue and white stilted dress with a grey t shirt.
Dress – Primark T-Shirt- Gift

Miraculously my t shirt got through the party without a spill, sticky finger or having to be used as a hanky. Thus my spoon deprived self gave it another go for dinner with my big brother and his boys. I came bearing gifts from my recent trip ensuring my auntie score stays high. Since the sun was still shining we were able to eat outside by the restaurant’s play park. We had some good carry on and the boys were happy all round.

ly is standing with both hands on her hips. She is wearing a blue dress with grey t shirt.
Dress – ASOS

This time I teamed the tee with a blue strapless dress. Love the hem and the fit in this one. I am always amazed by how well this jersey dress keeps its shape and holds in place. It is super soft and comfortable, but when it is on I feel completely secure that it’s staying on.

At dinner I finally discover cauliflower wings that weren’t too spicy hot for me. Even my vegan mocking bro agreed they were yum. Plus I caught sight of my reflection and my butt looked great. What more could I want?

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

My head is spinning…

~ somethinginthewayshemoves

It has been a week. Sometimes this chronic illness business is depressingly predictable. Others it throws you a delightfully new problem. The past week has combined both. Lucky me.

Let’s start with the spoonie admin. Apparently because I have Pots the airline requires proof from a Dr that I am fit to fly. I am fit to fly. I flew last year with no issues. I don’t require oxygen and I can follow the safety instructions should the worst happen. None of which makes any difference to the airline people. This letter has to be signed no more than 30 days before departure. Months ago I made an appointment and explained what it was for. So, imagine my surprise when I turned up at the prearranged time only to be told that their policies have changed; my GP surgery can no longer provide this service. They suggested I contact a private clinic. Since I would dearly like to go on my long awaited holiday, I did just that. After quite a few no can dos, I found a practice who could help. Huge sigh of relief. Right up until they emailed the cost. Oh, what I would give for a body that behaves.

The week then steered into familiar territory. A night of unmanageable pain culminating in a disastrous faint. My glasses were knocked off & one lens shattered in the fall. I of course landed face first in the mess, then proceeded to repeat the passing out & smash my head. Cue a day of blood tests, butterfly stitches and feeling appalling. Oh and obviously more cancelled plans.

I tire of discovering new hurdles and stumbling over the old ones. The week ahead will be mostly conducted from the safety of home. I intend to sit still, get some writing done and try very hard not to be so much trouble. Health is wealth in more ways than one. Bronan is relying on me to keep him in the luxury he is accustomed to.

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

Frozen Coke…

~ somethinginthewayshemoves

Valentine’s Day is my Dad’s birthday, so my plans weren’t remotely romantic. However, I haven’t been properly dressed in weeks and I wanted to look nice for a wee family lunch. After much wardrobe pondering, I plucked out some old favourites.

I haven’t worn this dress in ages, I loved the swish the petticoat added. I’m been very into the double velvet of late. I think I scrubbed up pretty well even if I had to stick with cushioned comfy shoes.

ly is standing in her living room, hands on hips wearing a black petticoat, rust tights and black bra.
ly is standing in front of a floral heart wearing a burgundy velvet dress and blazer. She is holding a frozen coke and walking stick.
Dress – Pink Clove Belt – Boohoo Tights – Snag Glasses – Where Light Blazer – Monsoon

We took Dad out for lunch and then did a little toy shopping. I even managed to finagle a frozen Coke, which I haven’t had since Australia. I love it, the delicious icy goodness was my valentine.

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