I was lost…

It’s 2.35am. I’ve been alerted via social media posts that it’s World Mental Health Day. I feel bound to write something on the topic. However, I’m a little stuck on exactly what that should be.

We’re probably all feeling stuck in one way or another. Nearly 2 years into a pandemic that has changed everything and nothing at the same time. It is surreal to learn that global crisis is status quo for the capitalist monster. It shouldn’t really have been a surprise, but somehow I thought perhaps we might find a way to rise. We haven’t. The incredibly rich continue to suck the (literal) life out of almost everyone else. Those already in the worst positions suffer the most. The rest of us get sick, grieve, sacrifice, struggle and still find ways to pay the rent. It’s A LOT. Even folk with the most robust mental health have floundered. Anyone who was shaky pre Covid probably found the rigours of a plague made them increasingly sinkable.

I’ve found myself in and out of a strange no man’s land. Not ok, but entirely unable to properly articulate the details of that not okness. I’m generally a bit lost. I feel like the world is crumbling around me. We’re witnessing tragedy after tragedy. Death & destruction abound. Our leaders seemingly with no more clue than the rest of us. Politicians still scrambling for money & power as the bodies pile up. Your boss still wants their 35hrs, tabloids still print trash & people are still sleeping on the streets. None of it makes sense.

We’ve already started packaging the accumulated trauma of Covid as ‘burn out’. People write peppy pieces on how to beat burnout with an aim of getting everyone back to bloody work. Back to the commute & the offices even though people are still dying every day. Why? Because despite working from home actually proving to be more productive the higher ups want you back where they can see you. No comfort for the workers. The Tory government continues to grind their boots on our necks too. Cut universal credit amongst Covid & Brexit insanity. Carry on fucking the NHS and refugees and hungry children. Then they film the PM doing puns of their ridiculous slogan and pretend that’s a solution. I’m surprised anyone is still sane.

It’s not over. No definite end in sight. Always another calamity over the next hill & zero provision for help. No extra money for mental health services. Accessing even the most basic support is more difficult than ever. All the people who were already living on a knife edge haven’t gone anywhere. The problem has just multiplied.

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So, this year I’ll repeat what I’ve been saying forever. Awareness is great, but to treat mental illness we need money and a different ideology. I can’t see any change in NHS mental health funding or direction until there is a huge change in Downing St. Not merely a change of party, but a shift in the will of power. My heart sinks when I think about how long that could take.

* Buy here.

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The Fear…

Spoonie life comes with many challenges. There are the obvious constrictions. Then there’s the hidden toll. The less apparent complications that pack a punch. It’s those tricky unseen issues that I want to talk about.

A major component of my chronic illness is anxiety. I have mental health issues which include anxiety, but my physical difficulties bring their own particular stresses. There’s the guilt; a feeling that’s perpetually nestling in the background of my consciousness. Guilt over letting people down, asking for help, using resources or saying no too many times. I have a million things to feel guilty about and every one of them has it’s own additional worries. I feel huge anxiety about cancelling anything due to illness. I worry people will be angry, upset, left in the lurch. I analyse every response and feel certain someone is annoyed. I overthink every request for help. Surely I can get this done without inconveniencing others. Am I asking too much? Always, always I worry that I’m just not worth all the extra effort.

Unfulfilled potential offers me unlimited scope for guilt. I am sure that I have disappointed. There are expectations that I have not met. Chronic illness has interrupted or ruled out so many things. I know my limitations have impacted more than me. I am haunted by the moments I may robbed folk of. To not live up to the hopes of those you respect is crushing. Not reaching your own is no party either. On an existential level it feels negligent not to maximise one’s talents. I spend more time than is reasonable worrying about all the ways in which I have short changed society. I am ashamed of all the things I cannot do.

Orange light is sunset shining in to a dark room

Shame looms large. Intellectually I know I cannot control any of my health issues. However, I’m not always great at translating that knowledge into feelings. I’m embarrassed about how little I can get done during the bad times. I often feel less capable, less valuable, just less. I stress about the judgements that will be passed. It’s very humbling to be unable to keep on top of all the housework. Likewise to have a head like a bird’s nest because your body just won’t allow you to shower & do your hair. I cringe at needing help to stand up. Wince every time I have to explain why I’m ordering a taxi to take me round the corner. Each unproductive day is a dent in the ego. It’s hard to feel worthy when writing two paragraphs & heating soup are a whole day’s accomplishments.

Then, some days you’ll wake up and feel relatively good. That should be lovely, but so often it’s tainted. Coloured with more guilt. How dare I enjoy myself when I’m supposed to be sick. Imposter syndrome creeps in. I start to feel if I can manage doing this nice thing I should be able to handle everything else. I feel bad for feeling good and I’m scared. I fear that I’ll be judged on my good days. I’m terrified that everyone else is thinking I should do better. When folk see me having a couple of glasses of wine with a friend do they think I must be fine? If I succeed professionally I’m convinced everyone believes I’m faking it. It’s such a difficult juxtaposition to live with; feeling terrible for all the things one cannot do whilst also believing the things you can will be held against you.

Yellow road sign with text, I’m scared my good days will be used against me

Even writing this is giving me anxiety. Will this be perceived as whiny? Or as me making excuses for myself. It’s not intended to be either. I just want to have honest conversations. Large aspects of the disabled/chronically ill experience are never acknowledged. Too often we’re judged or dismissed without ever having been listened to.

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The hurting time…

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

The dog days are done…

It’s been a rough couple of weeks. Extra illness, extra stress & very little sleep have taken a toll. My mood has taken a nose dive. I’m battling a fairly substantial wave of anxiety & the urge to just hole up at home.

I am fighting, though. One of the things keeping me going is how far I’ve come. These lows will probably always hit, but it helps to know things are not as bad as they once were. On days like this reading my own dark words shine a tiny light through today’s depressive fog.

The blood jet is poetry, ly h Kerr

I’m hoping some sleep & resolving some of the stress inducers will alleviate this bout of blue. In the mean time I’ll be digging deep in my chest of resources to keep myself focused on the light.

Bronan Kerr

Rest assured this boy is always looking after me.

My week (ish) in pictures…

I’ve not been the busiest of bees. I’ve had some minor illnesses dragging on & that has slowed me down. Thus my outfits are slouchy & my snap shots somewhat indolent. 

I’ve caught my city looking pretty in the sun & also the pouring rain that soaked right through to my knickers. There has been a lot of resting with Bronan. Plus plenty of time wasting selfies. 



I visited mum & her beautiful poodles, indulged in comfort food & noticed some lovely details on familiar buildings whilst the toy boy bored me with football. 


There has been nail painting, anti biotic gobbling & languorous layering of clothes. 

I was awoken by the toy boy’s kitten grooming me with her very tough tongue. Luxuriated in Joan Didion’s words & expressed some opinions via my badge collection. 


And just like that I give you the life of a procastinating freelance spoonie.