chronic illness

The hurting time…

~ somethinginthewayshemoves

Chronic illness becomes a way of life. You don’t stop feeling bad, but you do get used to it. Humans adapt. Pain becomes the new normal.

Most days spoonies deal with symptoms that would send healthy folk to the Dr. On bad days many would be considering 999. Chronic peeps, however, muddle through. Sometimes flare ups floor me. There are days when brushing my teeth is an epic feat. Others I function to varying degrees. I work & play & everything in between. Always, though, I hurt.

I pay the price if I over do it. I carefully plan routes & venues around how many steps will be required, if there is seating, stairs & so on. I pre check menus for items that won’t make me sick. Plan meals around when meds need to be taken. I do everything tired. It’s so hard to sleep & even when I do crash I wake feeling little difference.

Selfie of women’s sad face.

I found a way to work around my illness. Squeeze pleasure out of any socialising I can manage. I have become accustomed to cancelling things I really wanted to do. The list of things my body is no longer capable of grows. It’s ridiculous how sad felt upon realising I won’t jump on trampoline or turn a cartwheel again. Especially when I don’t even have much desire to do either. It’s just another limit. Another no.

I persevere. I follow Drs orders. I try all manner of suggested remedies. Acupuncture, cbd, floatation tanks, tens, yoga, the works. Some treatments help. There are medications that work wonders. Others that I need, but that cause problems. I take drugs to counteract the side effects of other drugs. It’s exhausting, but it’s my life.

Hand holding 5 pills of various shapes & colours

It is not all bad. I have privileges that many do not. My home is warm & safe. I have access to excellent care. I am gifted with skills & talents that allow me to pursue work I love. I have safety nets. I had years of being fit & well. I went to uni, got stuck into the partying & had the chance to travel a little. I’m loved. Pleasures great & small find me. My cat is the cutest. Life could be worse. I can handle this.

Cute black and white lying on back fluffy belly exposed

Except when I really, really can’t. There are days when chronic life overwhelms me. Days like today, when every inch of me is sore. Keeping a brave face when you’re throwing up for fifth time in as many hours is a challenge. Every day my first sensation is agony. Aching joints. Throbbing head. Burning skin. Churning stomach. Each little movement hurts. Remaining sedentary isn’t an option either. My arthritic parts seize up. Leading to, yup, more pain.

Food refuses to stay in my stomach. Don’t eat & the acid bubbles up my throat. Attempt to line my raw stomach and the vomiting makes everything worse. I can’t concentrate enough to distract myself. Sleep is illusive. There’s no escape.

Burdening others with my misery triggers my guilt. Keeping it all in is horribly lonely. Pain relief doesn’t work. Positive thinking is way out of reach. Some days are hard. It is too hard be grateful. Impossible to hang onto hope of easier times. Today I’m just thoroughly sick & tired of always being sick & tired.

Plus size women in green leopard print maxi dress with walking stick

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It’s just the way I’m feeling…

~ somethinginthewayshemoves

There’s nothing like a nation wide quarantine to really hammer home the fact that you’re childless. All anyone can talks about is their kids. How the silver lining of all this chaos is extra time with their cherubs. How being stuck in the house with them is driving folk crazy or all the creative ideas for activities to keep them occupied. It’s a non stop child frenzy. Unless you’re barren.

I hate that word. It feels accusatory & cold. It is, however the descriptor that keeps pushing itself into my head. Being alone in my house for over a month has contracted my world. There’s nowhere to hide. I’m content in my own company, but I’m accustomed to regular interruptions. Being unable to see friends, family or get involved in any outside work projects is tough. Those are my escapes. Adventures with little people. Laughs with big ones. Putting my skills towards something worthwhile. When you take all that away the only bit that’s left is empty.

Lilac & pink sunset over houses

There’s too much opportunity to be in my head. I’m not sleeping well, which facilitates bonus peak anxiety hours. Plus all this stress & uncertainty has opened the door to nightmares. Mostly relating to being pregnant & threatened by various dangers. With little snippets of real flashbacks thrown in for extra distress. When I’m not feeling powerless, I have a sense of being robbed. This strange, crazy time has necessitated hunkering down in family units. I don’t have one.

I have plenty of amazing people. I’m grateful, believe me. Lockdown has reinforced my belief that a husband is so not for me. With a little help from folks who are allowed outside I can manage my life just fine. If anything, it’s people to care for I want. I can’t stop myself from thinking how old my children would be now. I unintentionally look out for age appropriate lockdown activities. I imagine baking my Gran’s fruit loaf with tiny helpers. I caught myself constructing a home school lesson plan in my head. Fantasising about passing on one’s insights of the works of Lewis Grassic Gibbon is a lonely pursuit.

I have this sensation that I spend my life trying to squash. Hollow and raw. It’s as though someone scraped out all the essential parts of me with a dirty, jagged instrument. I occupy my time trying to keep the chasm sufficiently full. Packing in as many beautiful moments as I can find to prevent an inward collapse. Now my world is on hold, that void is ever present.

I know I am fortunate in many ways. I am able to stay safely at home. My housing is secure. I can video call the people I love. I will have access to healthcare if I need it. Life will resume. I do know that. I’m just struggling with the realisation that I’ll never fully heal this. Every time I think I have accepted my situation the wound is reopened & it feels fresh all over again.

Silouhette of toddler on sunny day

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We’d all love to see the plan…

~ somethinginthewayshemoves

Watching the seriousness of the corona virus sink into the general conscious has been a very strange experience. For the first time I am seeing healthy people get an insight into my life; en masse. It’s not pretty for anyone.

I want to preface this by saying this absolutely not an ‘I told you so’ (unless you’re a Tory, in which case, we did tell you so. Please do better). I really don’t want to see anyone suffering. I take no pleasure in the fact that a whole lot of people are about to share in the injustice & indignities that disabled people have grown accustomed to. It saddens me, but I suspect an awful lot of people are going to discover what we meant when we said this could happen to anyone. No matter how fit or successful, most of us are much closer to needing a safety net than we ever imagined before the fall.

Grlclb tories kill t shirt

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Anyone who’s ever had long term health issues already knows that most employers do not give a shit about their well being. The chronically ill are fully aware that our government couldn’t care less if we die. I know it is hard for able bodied, healthy people to grasp, but the powers that be are not concerned with making sure you can survive. It matters not that statutory sick pay isn’t enough to live on or that some won’t even qualify for it. Big business will prioritise their profit before your health. They’ll fire as many as needs be to plug a cash leaking hole. There will be backlogs because so many desperate people require help. The DWP & all the other faceless government machines will treat you like a subspecies. Boris & his buffoons don’t care if you can’t pay rent or feed your family. The underfunded NHS will buckle under the increased strain. They’re already telling us to prepare for our loved ones to die. Let’s be honest, most of the cabinet would be quietly delighted if the vulnerable are wiped out.

As always, those with the least will suffer the most. The rich will access tests & treatment that most of us cannot. They can afford to hole up in safety & comfort. They will profit from this global crisis. Private hospitals renting beds to the NHS, politicians insider trading, corporate bail outs for tax evading entities. It has to stop.

Reina sultan tweet

It’s already evident that the every day working people are relying on each other. The community spirit is admirable. I am so glad that people are looking after each other. However, it’s time we gathered that solidarity for change. Huge, impactful societal change. We must organise. In times of crisis it becomes clear that it’s the bottom of power tree that actually make the foliage bloom. Please let this radicalise you. Find the grassroots social movements in your area and get involved. Write to your representatives. Join rent strikes, sign petitions, vote when the times comes. Remember who stood with you during this pandemic. Let’s start elevating and rewarding the people we can trust to strengthen our safety nets.

* you can buy this amazing t shirt here. (Not an ad)

Still after all this time…

~ somethinginthewayshemoves

It’s Friday night. I’m watching Bridget Jones’s baby (again) after which I shall go to bed & continue re reading Persuasion. Probably a pretty nice cosy night in, but Bridget & Austen are red flags for me.

I always read Austen when I feel wobbly. I find the manners & gentle wit soothing. Whenever I read about Elliots or Dashwoods they seep into my dreams. Georgian heroines winning happy endings is a definite upgrade on what’s usually swilling around my subconscious. Bridget Jones offers a similar, but slightly more bittersweet comfort. Echoes of Austen, shadows of my own experience. Sadly, sans the fairy tale ending. They amount to my mixed media version of a junk food binge.

I love some good old fashioned romance, but my own Mr Darcy is not what I’m longing for. I don’t know that I’m actually cut out for the conventional vision of love. I’ve given it some good tries; satisfaction never abounds. Perhaps what I miss is just more innocent times. Younger me believed in things I can’t muster the faith for anymore. That is both freeing and, well, sad.

I feel like I’m standing on the edge. I can’t see what lies beneath. The uncertainty scares me. I’m grinding through the days. Fighting the urge to stay in bed. Backing thoughts of blood into corners. I’m teetering on the brink of that big blank something.

Maybe this is how you feel when you’re prone to crazy and about to turn 40. Or perhaps this is just always going to happen. Remission & Relapse. Almost sounds like a novel a 21st century Jane Austen would write. She’d probably find a way to lighten to the mood. Alas, I lack her talent.

Instead I’ll borrow some well-being from her work. Mansfield Park can follow Persuasion. I might even dig out the Bridget books too. I’ll take light relief where I can get. Hold my nerve. I’ve survived steeper falls than this. There’s always safe ground waiting.

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

When it feels like this…

~ somethinginthewayshemoves

January was a rough ride. Between norovirus, ear, throat, kidney infections and good old depression I haven’t had much fun recently. Out of the longest month I had about 5 good days & I only managed to look half decent on 3 of those. As ridiculous as it sounds, i’m quite pleased with myself for pulling it together & getting out the door that much.

What do spoonies wear when they are struck with regular person illness, but still want to look cute? A new found love of wide leg trousers has been my saviour. I still prefer a flirty dress, but I’ll be seeking out more of this style. My keep warm & comfortable whilst still looking cute uniform has been a combination of the wide legs, vests & my slouchiest cardigan.

Plus size women in black wide leg trs & stripey cardi

Trousers – Elvi

T- Shirt – Pretty Little Thing

Crop Top – Asos Curve

Cardi – Daisy Street via Asos

The first iteration of this look was for lunch with my fav man. I paired my beautiful velvet trousers from Xmas with the softest crop top & sheer tee.

Plus size woman in shark vest & velvet trs

Vest – Primark

Next up was a Tuesday adventure with the boy. I swapped out the t shirt for this sharky vest. The big toothy beast with the caption harmless amuses me. The boy is also a fan of anything with a shark.

Plus size woman in leopard print trs & stripey vest

Trousers – Asos Design x La Quan Smith

Vest – Primark

Last week I made it out to see my littlest niece & all my nephews before the infections really took hold. I was feeling rough & so grateful that I’d ordered these leopard print babies. Lovely warm fabric, gentle elasticated waist & big pockets make them a spoonie dream.

And in the interest of transparency, this is what I look like the rest of the time.

Plus size woman in jammies with walking stick

Glamorous, eh?

January girl…

~ somethinginthewayshemoves

January is turning into quite a challenge on both physical & mental health fronts. Mood dips at this time of year are predictable, but this feels like it’s edging towards more than that. Thus, I am doing the sensible thing & taking a rest.

I’ll be still be sharing other people’s cool stuff & perhaps bits from the archives. There’ll be a pause on new content. If you begin to miss me, you can find me here & here.

Black and white cat lying in back with text, paused for inner maintenance

And a happy new year…

~ somethinginthewayshemoves

I think it’s fair to say that 2019 has been a shit show. A political nightmare on a global scale. Environmentally disastrous & frankly a genuinely worrying time to be alive. My faith in humanity has taken a battering this year.

It won’t be like this all the time stencilled onto a pavement

It hasn’t been an especially uplifting 12 months on the personal front either. There’s been loss, illness & a struggle for meaning. It has all felt a little pointless at various stages, but I made it. Here I am living & learning. Carrying on.

Woman in bed with teary eyes

The year got off to a heartbreaking start, but there have been ups. I cemented a crucial relationship & extricated myself from one, which in hindsight, I hadn’t wanted to be in for quite a while. My people have proven once again how marvellous they are. Circling around when needed & letting me be when required.

Txt conversation

There have been a few professional triumphs. I returned to public speaking (terrifying), embarked on a little social media consultation & posed for some excellent photographers. I produced writing I am proud of and my expanded audience significantly.

I applied myself to the task of enjoying life. It’s not always easy when dealing with chronic & mental illness; I’m pleased with my progress. My little ones continue to be of endless interest. I have immersed myself in the joy they bring as often as possible. I’ve allowed myself to enjoy time with someone lovely & undemanding. I even had some successful surgery.

Selection of pictures of children

Most importantly (I think), I have released myself from the need to know where I’m going. I always thought my biggest purpose was motherhood & letting go of that dream has been challenging. I felt bereft of meaning. It has taken time & wise counsel to discover that perhaps I don’t need all the answers right now. It’s ok to take some time to breathe & live. Hopefully other options will present themselves. In the meantime I can work on career goals and hopefully continue to squeeze maximum happiness out of life.

Path continued painted cement ground with foot & walking stick

So, it’s true. Life goes on. I suppose that’s as true on a larger scale as it is personally. We can still strive to be the change. Sadly, it looks like there will be lots of opportunities to test the courage of our convictions. I hope we prove ourselves brave.

Mirror image of fat women smiling

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* Photography Credit – Megi Aben

Easy ways to support your spoonie friend at Christmas…

~ somethinginthewayshemoves

I often share tips to help chronically ill people manage different aspects of their lives. However, sometimes the trickiest part of the spoonie life is dealing with how those around us react to our illness. This time I thought I’d give some hints to those who know & love a spoonie.

Please don’t give us a hard time when we cancel

This applies all the time, but especially during the festive season when there are so many events & parties. We know we disappoint you when we cancel. We aren’t sick on purpose. We can’t control our flares. Trust me, we really want to be there. We are sorry we’re missing your thing, particularly if it’s really important to you. It’s fine to say you’ll miss us or you’d have loved us to be there, but please don’t get angry. Try to consider all the times we do show up for you despite being in pain or dealing with other symptoms. We already feel more guilty that you can imagine & we are incredibly grateful that you stick with us.

White txt on pink background, my brains says let’s do something exciting today. My body says don’t listen to that fool.

Take our restrictions/limitations into account when planning activities

Disabled & chronically ill people can have a whole range of needs. We really don’t have a problem answering questions when they are considerate & relevant. If you take into account accessibility needs (disabled toilets, stairs, seats, dietary restrictions, crowds etc) it is much more likely that your spoonie friends can attend. More than that they’ll actually be able to stay for the whole shebang & enjoy themselves. It is actually much easier that you think these days. Many venues are happy to help you make accommodations or already have them in place. All varieties of specialised food are commonly available. Plus I for one am often happy just to know there will definitely be a seat so I can retreat if I need to.

Take no for an answer

If we say we are too ill, we mean it. It’s not an excuse nor the start of a debate. We’ve always thought out every possible variation before deciding we can’t make it. It doesn’t help when you say we’ll feel better once we’re out. We’ll feel much worse if we push ourselves too far. We know our limits & all our responsibilities; we are the best judge of what we can handle.

No comparisons

Please, I beg you, don’t do comparisons. Getting upset because we went to so & so’s birthday, but can’t come to yours is pointless. It won’t make us any more able to attend & will just make everyone feel worse. Chronic illness is a crap shoot. We never know how we will feel on any given day. We might have been the life & soul at dinner last week, had a ball with the wee ones on Tuesday & unable to move without crying on Thursday. There is no predicting how chronic illness will behave. The things we don’t attend is not linked to how much we wanted to be there.

Siamese cat on blue background with txt, no pain no gain. Chronic illness is not a competitive sport.

Bonus Tip

Don’t tell us we can do anything we put our minds to. We absolutely can’t & this is a shitty reminder. It’s not inspiring, it’s dismissive.

Your spoonie friend loves you. They are delighted that you are on their life and they are doing everything they can to be reliable & fun & supportive. Please cut us a little slack.

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

My week (ish) in pictures…

~ somethinginthewayshemoves

It’s been a bit up and down of late. Thankfully the highs are good enough to get me through the dips. Plus Xmas is close & I’m definitely beginning to feel merrier. So, let’s have a we round up of goings on before I get swept up in all the festivities.

Last week I had some Xmassy cocktails with my favourite man. I took a trip to the very rainy seaside to do some giggling with my lovely Lisa & her equally lovely boy. I checked Edinburgh’s pretty lights on the way home. Of course I spread a little #projectpostit wisdom as I went.

I did a whole bunch of rascalling with my middle nephew; including cinema trips & fun in GoMA studio. Hung out with all three boys together & did some excellent FaceTiming with my big muffin. We got started on all things Santa & I even wrapped the first of the presents.

This week involved another Edinburgh visit for an exciting meeting. Followed by a lost bank card, lots of stress & some big glasses of wine with my favourite man to save the day. It was a perfect winter day; freezing cold, but crisp & dry. The light was dreamy.

Back home I lost a battle with some frost & my driveway. Snuggled with my puss cat & put the tree up.

I had a little sister time. Got seasonal with my nail art & snapped all sorts of things that took my fancy.

Please let me get what I want this time…

~ somethinginthewayshemoves

I know lots of you have election fatigue. Our political landscape seems desolate. Truth & right & consequences appear to have become blurred. I understand if you are sick of it. I get it if you feel like you can’t make a difference. However, this election is literally life or death for many people. Your vote matters. Please use it.

I’m making a genuine plea for myself and for societal good. I beg you, don’t vote Tory. Brexit is and can only ever be a disaster. The NHS is on its knees, food bank usage has soared, homeless people are dying on our streets, child poverty continues to rise. The most vulnerable members of our society are being crushed by the conservative government. The savaging of our welfare system is purposeful & ideological. It is not possible to opt out of sickness, unemployment or ageing. Even if you vote purely for your own well being, the Tories are not in your corner. You never know when you may need the services & rights they are systematically destroying.

Please don’t vote Tory in white letters in green background

You have to look beyond the headlines & media smears. Corbyn is not an extreme left maniac. He has a fully costed manifesto of common sense labour policies. He wants to create a fairer society for all. He’s fighting for wages you can live on, a roof over everyone’s head & food in our bellies. He wants the incredibly wealthy to pay their share (at a rate that will not make any significant difference to their lives). The labour manifesto will secure our health service. Corbyn is not perfect. Frankly, I have major issues with his views on Scotland, but he is our best bet. He is principled man who has been consistently on the right side of the fight. He is trying to improve life for everyone.

I ask you to approach this election like a bus journey. If there isn’t a direct bus to your exact destination you find the next best option. You get the bus that takes you as close as you can get. A vote for the conservatives will only drive us into a ditch. Liberal Democrats have already shown us what they do with power. We have to be tactical. Vote for Labour or whoever can beat the Tories in your constituency. Only opt for other parties in areas where it can not benefit the conservatives.

We have a chance for real change. Please don’t let it slip away.