Is it cos I’m cool…

If you believe the right wing press, being disabled or chronically ill is the latest trend. About a month ago Kathleen Stock (notable anti trans activist) wrote a piece for The Times titled ‘Why are so many young women using walking sticks?’. Her complaints about the use of mobility aids clearly chimed with Poppy Coburn, who, this month penned ‘How having a disability became cool’ in The Telegraph. Both pieces rely on the same prejudice and ignorance. Ultimately, they also support the same agenda.

Stock & Coburn both proclaim there to be more disabled people than ever before. They specify that these disabilities are mostly amorphous and hard to prove. Coburn in particular takes aim at PoTS. Both writers conveniently ignore that we have all lived through a global pandemic, which experts have long warned would be a mass disabling event. With this in mind, PoTS is particularly relevant. Covid has resulted in a huge increase in PoTS diagnoses. PoTS is one the acknowledged conditions that Covid19 can induce. I myself, was left with PoTS after contracting Covid. I was intially diagnosed with Long Covid, but Drs quickly noticed that my symptoms mirrored those of PoTS. Far from Coburn’s claim that Pots is hard to quantify and diagnose, there are actually very clear markers and tests. Tachycardia , Dizziness & Syncope, Breathlessness and Air Hunger. There are of course many more symptoms, but these are usually the red flags for PoTS. All of which can and are quantified and recorded with standard medical tests. Media like this supports the notion that chronic illnesses are so indistinct as to be easily faked. This is of course nonsense. Equating many people struggling to get a diagnosis with a condition being difficult to diagnose is absolute bullshit. This narrative increases stigma and ultimately makes accessing appropriate support harder. Which is of course, kind of the point.

The cool factor, they insist, is intrinsic to the rise in chronic illness. Coburn posits that chronic illness & disability are in fact a lifestyle. The appeal of which is fame, fortune and the easy life. Conditions like PoTS, EDS, MCAS & Fibromyalgia are, she says, used as an excuse to avoid adult responsibilities. Thus unencumbered the sick & disabled are free to pursue their chosen lifestyle. Longterm sickness is absolutely a choice to Coburn & her ilk. By her telling, there are no years of debilitating symptoms, no ever increasing medical visits, no fighting for diagnosis nor any battle for relief. Nope; one simply decides that they are chronically ill. Perhaps this is accompanied by sharing one’s experience on social media and voila, a new identity is born. Of course, everyone who has a chronic illness or disability is automatically granted vast amounts of disability benefits. Those Instagram posts always turn into large follower counts and lucrative brand deals. People share their experiences not for catharsis or in an attempt to help others. Their true motivation is profit and clout. Both of which are abundantly available. Disability is of course, very glamorous and society is famously eager to endlessly accommodate. Sickness becomes an entire identity. A victim mentality is encouraged, nay, embraced by the communities that have emerged. Thus, people seek to display their disability with customised mobility aids to up their cache. It is not unnoticed that Coburn and Stock critically align the disabled community with other marginalised groups. Just the latest ridiculous fad among the loony lefties. Life as ‘sickfluencer’ is all health updates on social media, sparkly mobility aids and raking in the PIP.

The reality of chronic illness is a far cry from Poppy’s ‘cool kids club’. Both writers focus on young women, the inference being that this a group that is not to be trusted. The misogyny echoes the bias women often face when seeking medical help. Women routinely receive subpar medical treatment. We are less likely to have our symptoms believed or investigated. Diagnosis takes far longer for women, than men. Conditions that mainly or solely affect AFAB people are not well researched. Even our access to pain relief is severely limited. Medical misogyny has been well established. The activism of women has been a pivotal factor in changing this. These articles ignore the battle that has been fought for the recognition of these conditions. There has been a rise in diagnosis of ‘invisible’ illness. This is not because people are faking, but due to wider recognition of those conditions. These conditions – and the suffering they cause – have always existed. The only difference is they are now officially accepted.

Diagnosis obtained, the next step is not, as suggested, to collect disability limits and live a life leisure. To begin with, the main disability payment PIP (Adp in Scotland) is not an out of work benefit. It designed to cover the extra costs that occur due to being chronically ill and or disabled. Many people in receipt of these benefits are working. Those who do not are unable to. Claiming disability benefit is not easy. Infact, the system is designed to discourage applicants. The intial paperwork is exhaustive. Each condition, treatment, medication and medical professional seen must be detailed. Furthermore, each symptom and how they impact daily life must thoroughly described. Medical evidence is required for every claim. This process is followed by DWP assesment. These are carried out by ‘medically trained’ assesors, but that medical training is rarely relevant to the claimants being assessed. Assessments consist of being questioned about every aspect of life, often being forced to disclose the most private and distressing details to a stranger. That assessor will then decide if/what you are awarded. Unfortunately these assessors rarely accurately represent what occurred in their reports. There have been countless examples of proven lies and cases of severely ill people being denied. From there one must undertaken a stressful appeal process that often seriously impacts the claimants health. The fact the majority of people who appeal will succeed underlines the fact this system is not fit for purpose. Having been through the process, I do not believe it is possible to be falsely awarded disability benefits. The DWP’s own research put fraudulent claims at less than 1%. The people who are awarded these benefits are significantly disabled by their conditions. The hate mongering that these pieces indulge in serves only to goad the public into accepting the withdrawal of support to some of the most vulnerable members of our society.

The truth of chronic illness is much bleaker than Coburn or Stock would have you believe. There’s no choice about the constant pain, fatigue, nausea or passing out. There symptoms cannot be switched off. There’s no magic wand to improve one’s mobility or rework our genetics. It’s a continuous battle to function in a world that refuses to accommodate us. We’re not chilling at home eating lollipops. We’re stuck there, physically unable to take part in our lives. Sharing these stories online isn’t a popularity contest and I can tell you from personal experience, the odd PR product does not a rich girl make. I was actually gifted some of those ‘designer’ compression socks that Coburn mocked (value Aprox £25). They’re just compression socks that aren’t ugly. I need compression socks and if I can offer a genuine review to others I will. Being disabled doesn’t stop people having style or a personality. A pink walking stick is no different to pink glasses. No one accuses people of wearing funky glasses because poor eye sight is the latest trend. Content on this topic is usually about awareness and connection. These articles are evidence of the stigma that abounds. Information is the best tonic for ignorance. We disabled/chronically ill have to advocate for ourselves. We are forced to gather information and insist on second opinions or we suffer in silence. Debunking misinformation is essential to prevent our rights being further eroded. There is also solace to be found in shared understanding. Being too sick to partake in a social life can be very isolating. Even being the person that cancels has an impact on relationships. Finding others who understand your experience is powerful. If a very few people can parle that into a career why should that be problem? Aren’t hard work, entrepreneurship and self sufficiency hallmarks of the right?

The offending socks.

It scares me it that these vile attacks now pass for mainstream journalism. These articles are clear propaganda. They are filled with untruths and snide judgements. The agenda of these pieces is blatant. Yes, they represent another skirmish in the culture wars, but they’re also a signal. A beaming light that directs hate. The disabled and chronically ill community are the latest target of the right’s misdirection. If the populace can be convinced that immigrants, trans and disabled people are the cause of all their woes, they won’t pay attention to the elite who are in charge. Like clockwork, a few days after The Telegraph piece we get details of Reform’s planned cuts to PIP. Politicians who choose to make deeper cuts to the welfare state, sell of you public services and rile up facist thugs are not your in your corner. Neither are the minions who spread their propaganda. Don’t be fooled by it.

Hurting Time…

I have been struggling with really high pain levels for quite some time. I’m trying changes to meds and pain relief strategies. My dr has ordered some tests, but so far I have not found relief. When pain overtakes me like this I seek one thing; comfort. Here are some places I have taken refuge recently.

Alan Bennett

I was delighted to discover that Alan Bennett had released a new volume of diaries and stories. I stumbled upon Bennett in my late teens/early twenties. I saw one of his books on sale and it piqued my interest. I fell in love on the first page and have devoured his work since. His writing feels like sinking into a warm bath. His memoirs paint the picture of a kind, funny and intelligent man. He always seem to be on the write side of important issues and handles life with grace. His plays are genius. So well observed and engaging. Basically I gain a feeling of well being from immersing myself in his words. If I’m too sore to sleep at least I can get into bed with these comforting pages.

An Oldie

This one is random. I saw an advert for a streaming service that included a really old sitcom that I used to love. The sitcom is As Time Goes By, it’s an early nighties show starring Judi Dench & Geoffrey Palmer. The premise is an older couple reuniting after being separated for 30yrs. They were in love in their youth and lost touch via a postal accident. Both thinking the other had rejected them. They are flung back into each other’s lives and fall back in love. It’s a gentle comedy. It’s also really lovely. Second chances, fate, the one who got away all feel romantic to me. Anyway, I of course downloaded the service and binge watched the delightful lot.

Music of The Night

Pain like this is usually accompanied by insomnia & that is currently the case. Sometimes even if I can’t sleep I will try to at least lie down and rest. For this I need a dark, cool room and some soothing music. Weirdly, one of the genres that relax me is musicals. The Lloyd Webber/West End type. I’m talking ‘Music of Night’, ‘Send in The Clowns’ kind of fare. Something about all those soaring emotional notes soothes me. Thus, I may recently have been spending the wee small hours singing show tunes in the dark.

Bru Boy

Finally, there is my boy. Bru is a very snuggly cat. Like most cats he seems to sense when I am having a really hard time. He will come lie with me in bed or climb right up on my chest to comfort me. He also does a very cute head butt thing. If I ask for kiss, he headbutts my mouth. He also grants me a little grace when I’m struggling and offers no complaint when breakfast is a late. I have been extraordinarily lucky with my beautiful cat companions. I am forever grateful.

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

Why do you have to be a heartbreaker…

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.

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Yellow Days…

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.

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Ordinary pain…

Pain is a curious beast. Its purpose is to protect us. Our own built in warning system; something that compels us to take our hand out of the fire or call a doctor. The whole point of pain is to give us a message that we don’t ignore. That is until something goes wrong. Then ignoring pain becomes your life mission. 

Chronic pain is impossible to accurately describe. If you haven’t experienced it, you can never understand. All our lives we’re taught to report pain. The expectation being that you find the problem and there will be a solution. You graze your knee, your mum puts germolene on & kisses it better. You break a bone, you get a cast & it heals. Now with vigilance we can even hope to survive life threatening illness. We are a society awash with information; what foods we should eat, how often & how to move our bodies, how much sleep, water, sunlight are optimal. Our collective consciousness is set to believe that if we do the right things we can prevent illness and if something still goes wrong we can fix it. When that doesn’t happen, you’re stuck in a void. Physically, you are ill, but psychologically you must find a way to override it. 

 I am awoken most mornings by pain. I average about 4hrs sleep and rising from my bed is a fainting hazard. Every step I take hurts. My digestive system is best described as erratic and my autonomic processes are haywire. Thus I spend my days dizzy, sore, nauseated, exhausted and unable to regulate my temperature. That combination would bring most people to a standstill. You’d call the Dr, take the day off and you’d be right. But it’s everyday for me and Drs can’t help. I can’t ‘call in sick’ from life. I’m left with the challenge of learning how to turn off my body’s alarm system. 

Unfortunately, you can’t. It isn’t possible to stop the pain. Chronically ill people just have to do it anyway. The only alternative to missing my entire life is to do as much as I can despite the pain. It takes a lot of work to rewire one’s natural responses. Then even more work to decipher how far you can push. A huge amount of planning is involved. There are calculations required for every single thing I want to do. Firstly the practical: 

I always try to schedule my days. I estimate in advance how much impact each activity will have on my body. Then aportion rest days accordingly. Not just big days, but daily essentials like housework or showering. I attempt to judge how much I can handle and how long a recovery period I will require. 

The next step is planning. Before I go anywhere I check various things. Will there be places I can sit down, do they have disabled toilets, can I access water & food I can eat? Then I figure out my condition that particular day. Is my stomach behaving? Will it be safe to eat when I am out or am I likely to vomit. Am I especially dizzy? How safe is the location if I faint? Can I physically manage the walking distances involved?  And so on and so forth. 

The last stage of practicalities is symptom management. Medication selection, will I require more than meds for pain relief, do I need to take food or water. What clothes will keep me most comfortable? Items that won’t increase pain, will be cool enough if I overheat, but easy to carry layers to guard against the cold if necessary. Maybe I need cooling spray or my tens machine. How many of these things can I actually carry? All must be weighed up before I step foot out of the house.

Preparations complete, now comes the really tricky bit. It’s time to manage my mind. This part is entirely in my hands. There are no guaranteed techniques. One can see pain specialists, psychologists and research til the cows come home, but you can only know what works via trial and error. One of my conditions, Fibromyalgia, impacts the way the central nervous system processes pain. Sometimes my nerves send pain signals to my brain that are way out of proportion. I can have pain anywhere or everywhere for no discernible reason. The only way to function is to override that pain. I can’t stop feeling it, but I can attempt to alter how I react to it. 

My first line of defence is what I call ‘mind over matter’. I focus only on the very next thing to be done. Nothing else exists. For example, I must get to the seat up ahead. I don’t think about which parts of me hurt. No lingering on the sensations I am experiencing. I do not consider what comes after the seat. I keep my eyes on my target, keep moving and tell myself I can rest when the task is complete. This theory can be applied to anything. Brush my teeth, finish the paragraph, get to the end of the driveway. The reward of rest awaits me. 

In bouts of extreme pain I opt for deception. When I have tried every pain relief method at my disposal to no avail, I lie to myself. I close my eyes and repeat ‘I’m ok’. It doesn’t lessen the pain, but it can con my body out of panic. Panic makes pain worse. The body tenses & heart races. Calmly telling myself that I am ok repeatedly can override the fear coursing through my body. The pain may be unbearable, but I won’t stop the repetition. I will bear it. 

Distraction can be of use in various forms. Really loud music is a rudimentary diversion. As is cold water/ice or projected light. Basically I bombard my brain with stimuli in the hope of distracting from the pain. It’s a trick, sometimes it offers temporary relief. My other interruption tactic requires the help of others. I need someone to talk to me. A steady stream of words without my participation. Don’t ask me questions or wait for a response, simply give me a voice & a narrative to focus on. I’m not sure why but it has a calming effect. I don’t take in everything that is being said. I merely zone in on the voice and try not to think about anything else. It doesn’t stop the pain, but it somehow helps me manage it. 

My last ditch effort is comparison. I recall a time when my pain was worse. I remind myself that I got through that. The pain did eventually end. If it passed before, it will pass now. I endeavour to remember all the details. Where I was, what I wore, the smells, sounds, what my eyes rested on, the sensations of needles piercing my skin, the names of medical professionals, were they kind or rude, how long I waited, did I lie down and every other particular. Eventually, reaching the point when the agony began to subside. I strive with all my might to recollect that sensation; the incredible relief of pain beginning to melt. I hold tight to the belief that it will come again.

And there you have it, the tools in my box. Of course none of them actually leave me pain free and they’re all exhausting. It takes enormous energy to pre-empt every move and even more to employ these strategies whilst already in pain. At the worst moments they don’t have any impact at all. There are times when my body is excruciating. The pain so all encompassing that there is no escape. On those days I am beaten. I stay still and hope for it to be over. That’s the real truth of chronic pain; there’s no getting away from it.

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Still…

I’m doing well. I really am. When I compare with my previous self there is no doubt that I’m in a much better place. Still, no matter how well I become, the devil on my shoulder remains.

That devil is destruction. Self destruction. Sometimes just flashes; a momentary thought of blood or blades. Other times I experience the deepest longing to ravage my skin. My reaction to pain is still, more often that I would like, the desire for more pain. Not the same kind of pain. A pain I can control. I have worked at working myself out. Learning healthy coping strategies, questioning myself, pinning down what I feel and why have been an ongoing process for decades. I am better. I haven’t self harmed in a very long time. I still want to, though.

Not everyday. Not in the compulsive ‘can’t think about anything else until it is done way’. I don’t berate myself for not cutting or create a mandatory timetable. That is gone. I have conquered that aspect of my demon. My problem is, the underlying urge never really goes away. In times of trouble my mind thinks it knows what will ‘help’. I suppose it’s like being an alcoholic. There will always be days when one really wants a drink, except in my case it’s a scalpel, not a bottle I want to reach for. The weird bit is that these thoughts aren’t reserved for awful days. Occasionally, for no reason whatsoever, a wave of craving will hit me. Honestly, my toolbox isn’t particularly helpful in those instances. It is very difficult to reason with a nonsensical ghost in your head. I’m left with sheer determination & an awareness of how slippery the slope is.

Strangely, I rarely hear anyone talk about this. There is much discussion about the warning signs for self harm, the damage it causes and how to stop. There is even information on how to treat wounds and hide scars. It’s all very much a before and after narrative. People are sick and then they recover. As I’m sure you’re aware, very few things are ever that simple. We generally understand the complex nature of addiction and mental illness. For example, much work has been done to educate people on eating disorders. Most people know how difficult they are to manage and recover from. It’s generally understood that people are not concretely cured. It is a process that involves relapses and continuous effort. Disordered eating becomes compulsive and corrupts thought patterns. Often nothing is as important as maintaining the disease. Likewise substance abuse takes over a person. The priority becomes obtaining the substance of choice. Whilst no one thinks that’s good or healthy, we do understand that people don’t want to be controlled by an illness. These are topics that are commonly discussed; we have compassion and celebrate those who have worked towards recovery. Not so for self harm.

Self harm is still taboo. There isn’t really any mainstream discourse of its realities. No one is making serious documentaries or accurate media portrayals. Celebrities aren’t telling stories of how they won their battle with self harm in the way they regularly do regarding addiction, eating disorders or issues like anxiety. The latter are viewed as brave and inspiring, self harm is still seen as disturbing. Even talk of relapse or the ongoing nature of recovery are received positively, but discussions like I had above is very much in the ‘crazy’ category for most. Despite the fact that statistics show the prevalence of ED & SH are fairly similar and that they share many commonalities, the public perception is very different. Even years into ‘recovery’ it frustrates me. The stigma sticks. I can carry the weight of other people’s judgement now. That wasn’t always the case and it won’t be for many still in the throes of illness. The fear of the judgement creates an impediment to seeking help. That delay is extremely dangerous. So, yes, I’m still talking about this because hardly anyone else is. I don’t believe people get better in silence and I think it helps to be prepared for what better might actually look like.

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5 things I liked in April…

April has been a very up & down month. Lots of really lovely time spent with my littles & their people. Also, an equal amount of time despairing at current events & struggling with mood dips.

I have coined the name ‘Depression Light’ for this state. It’s not deepest, darkest agony. More of an ugh that makes everything feel a bit futile. I am generally anxious and really not sleeping well. Sometimes it’s the little things that keep you afloat. These have been my buoyancy aids this month.

Spring Lambs

Taking my niblings to see the newborn lambs at a Farm Park was very life affirming. Watching the kids pet the baby lambs & their Mums was really wonderful. I even got a wee snuggle in myself. We learned that most sheep have twins, some have triplets & even rarely have quads. Imagine having all those little legs inside you? Animals are incredible. They mostly give birth all on their own and their babies are up on their precious little legs within 20mins. All that & they are adorable.

Iron Strawberry

My silly body doesn’t properly digest iron. To combat the resultant anemia I have occasional iron infusions and daily iron supplements. My liquid iron came in a revolting mint chocolate flavour. It did not taste at all like chocolate. The best description I can give of the flavour is a gritty, oily minty nightmare. I did not enjoy swallowing a spoon of it twice a day. The arrival of this month’s prescription brought a partial reprieve; strawberry flavoured iron! Honestly, it doesn’t taste good, but it is not the horror show of the minty choc. Small victories.

Vinyl Bonding

One of the things my niece requested for Xmas was a record player. She’s 15 and very into all things retro. It came as quite a shock that most the retro she’s loving hails from my hey day. Once I got over how old that made me, I have been loving introducing her to classics from my youth. Turns out we have similar musical tastes. I have been loving sending her old albums and the long FaceTimes we have to discuss them. I was worried that I’d lose my cool auntie status once she hit high school. Alanis Morrisette, Jeff Buckley and our joint penchant for saying it how it is might just buy me another few years.

The ‘Beautiful’ Game

A funny thing happened whilst I was doing some research for a piece. The piece was on football culture, I am familiar as an observer. I grew up in the West Of Scotland surrounded by football fanatics. I know a bit about football culture. I don’t however enjoy the game. It bores the life out of me. However, during my research I discovered something I unexpectedly love. Stick to Football, is a podcast (it’s filmed too) where ex footballers talk about football. Except they stray from the topic and it’s hilarious. Especially Roy Keane. I doubt I could have told you who he was a few months ago, I am now a bonafide fan. I do have to fast forward when they get bogged down in tactics and players I’ve never heard of, but I still look forward to a new weekly episode. I even ended up reading both of Keane’s books. Those close to me find it hilarious that I, the vocal hater, am an avid watcher of something with football in the title. Hey, you can’t help what you love.

Comfort Reads

Whenever I’m feeling down I turn to literature for comfort. When my insomnia starts acting up I need a steady stream of familiar favourites. This month I have been re reading some of my most loved novels. Jane Austen is a go to, I love sinking into her world. I started the month with Persuasion & am finishing it off with Mansfield Park. You can’t beat a clever woman getting the happy ending she deserves. Also at the ready was Barbara Trapido. The Travelling Hornplayer holds a special place in my heart. I found it at a difficult time and it has brought me peace on every read. It even partly inspired one of my tattoos. Trapido weaves intricate stories with overlapping characters. A truly beautiful writer. Her only flaw being the focus on middle class/oxbridge set, but the storytelling is so good that I can forgive it. Finally, I sought refuge in Carrie Fisher. Fisher was the first writer whose words expressed my experience of mental illness. She was a genius; no one on the planet ever wrote like her. This month I choose Delusions of Grandma & Surrender the Pink, but I suspect I’ll be diving into her catalogue again in May.

What gets you through?

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You keep making me ill…

It gives me zero pleasure to say, but my concerns about the current government have proved to be correct. In the last few weeks I have watched aghast as Labour MPs have announced plans to gut disability benefits. Watching Wes Streeting boast about enacting Tory policies was a sickening confirmation of how far his party has fallen.

It is exhausting to repeatedly repudiate the narrative politicians spin about disabled people. However, it seems it is again necessary. I’d like to give you a simple run down on why Labour’s proposed cuts are wrong. Hopefully I can also dispel the lies they are telling to defend them.

Let’s start with what Personal Independence Payment (PIP) actually is. It is a benefit payable to those with a severe disability. It is not an out of work benefit. Nor is it means tested. The purpose of PIP is to mitigate the extra costs that come with disability and/or longterm illness. The latest stats show that the average extra cost for a disabled person is £975 p/m. Compare that to the maximum PIP payment of £737 p/m and it becomes clear that no one is living the high life via disability benefits. There are many people in receipt of PIP who do work. Those who don’t are unable to.

Labour plans are to freeze the payment (stop increases to keep up with inflation) and tighten the qualifying criteria. Their contention being that too many people receive PIP due it being too easy to qualify. They also push the idea that there are many people receiving benefit who do not need it. Labour is continuing where the Tories left off with targeting one of our most vulnerable populations. Welfare recipients and disabled people in particular are an easy target.

The assertion that it’s too easy to qualify for PIP is ridiculous. Let me be clear, no one without an official diagnosis is receiving disability benefits. Successfully applying for PIP 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. Alarmingly, Labour MPs are making a lot of noise about the rise in those out of work due to mental illness; giving a big hint as to who they may go after. Expert medical opinion is already ignored when it comes to work capability assessments. Our previous government destroyed lives with denials and unnecessary reassessments. Many of which were over turned by appeal. The problem for disabled people is the toll this process takes. Applying or appealing a decision is exhaustive and intrusive. The process strips applicants of dignity, applies incredible stress and often makes people sicker. The DWP routinely reject applications from people they know qualify. What Labour mean when they say they want to make us harder to qualify is that they knowingly want to deny essential help to people who absolutely need it. The DWP’s own findings assess the fraud rate for PIP at 0%. There is no evidence to suggest that anyone is taking advantage of disability benefits. Removing PIP will not encourage people back into work. Those who are unable to work will not be cured. Those awaiting treatment will not magically jump to the head of NHS queues. Those who would like to work, but cannot find an employer to meet their accommodation needs will be in the same position. The sick and disabled are not the cause of the UK’s financial problems. Nor is it within their power to alter their situation in life. Our government know this and still choose to make cuts to a life saving benefit.

What Labour have become under Keir Starmer is shameful. The PR campaign for their benefit cuts will further stigmatise a group merely trying to survive. Starmer & friends are too cowardly to tackle the rich with tax increases, closing tax loopholes and similar policies. Thus they turn the might of the government and sections of the media against the group least able to fight back. They do this fully aware of the consequences. Disabled people will die.

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Somewhere beyond the sea…

During the school holidays we took a little trip. It was a belated birthday getaway for my sister, who turned 40 in December. We also both needed a bit of a break. What better way to relax than to take a 7yr and 6mth old to a blustery island?

Believe it not or it was bliss. I go away with my sister and the boys fairly often. In fact I start to yearn for round the clock auntie time if we leave it too long. Pleasingly big nephew also clammers for our next holiday. This was our first go with the new edition and it was wonderful.

Arran was, as expected, stunning. By pure chance I always seem to visit Scottish islands off season. Honestly, I think I like it that way. The rugged beauty in Scotland lends itself to the wilder aspects of our climate. If you’ve never stood in the middle of Scottish nowhere on a cold blustery day, you really should try it. There is something wonderful about wrapping up warm and venturing into the wilderness.

Anyway, back to this trip. We stayed at Auchrannie Resort which is genius combination of spa retreat and family focused. We were obviously taking advantage of the kid friendly aspects, but it would make a fabulous grown up escape too.

I had an absolute ball with my sister and nephews. We did a lot of swimming, explored the island and even a bit of archery. Turns out that for some reason I’m a pretty good archer. A fact that annoyed my competitive little sis. Come the apocalypse my chances of survival have increased, as long as I can get hold of a bow and arrow.

I of course indulged in one of my favourite hotel experiences, the buffet breakfast. I rarely eat breakfast. The luxury of having anything I could want prepared and ready tickles me. I don’t choose anything fancy, but I still love it. Toast, cornflakes & potato scones also happen to be the best fuel for a day in the great outdoors.

On our first day we set out in search of some standing stones. Unfortunately the big daddy stones were a trek too far for me. I did manage to reach a smaller stone circle, which was just as atmospheric. My sister and the boys headed on to the big stone circle whilst I enjoyed a little alone time. There is something magical about being amongst all that wild beauty and feeling completely alone. I live in big city and am never very far from other people. Don’t get me wrong, I love the hustle. There is however a part of me that longs for that fresh cold air in my lungs and no people.

We also managed to take in a few of the islands beaches. It rained on our last day, but that didn’t stop us. I prefer a gloomy beach, wind & rain feel like the real personality of the sea.

All in all it was the perfect trip. Now to buckle back down the drudge of daily life.

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I walk the line…

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

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