Tuesday, 7 December 2021

Practically Perfect

I always thought that in order to label yourself as a perfectionist, you first had to be somewhere close to being perfect. I couldn’t see that I was a perfectionist when I’d flunked my exams and missed out on university. When I sometimes burned the dinner and there were occasional balls of dust drifting along my skirting boards. When my sunny disposition sometimes gives way to flashes of rage.

I was wrong. I’m a perfectionist to the core. I get off on perfect. Perfect is my drug. I love perfect. Give me an untidy desk and I’ll line up your paper clips and stapler and heave a sigh of relief when it looks perfect. Give me a task and I’ll try my absolute best to ensure that you can’t possibly criticise me, not even if you scrutinise and scour for faults. If you could download my brain you’d see a hefty file full of ways that I criticise myself for not being entirely perfect.

In 2001 and again in 2005, I ground to a halt. I was working in jobs where my chances of pleasing everyone were negligible and completion of all of the tasks that were expected was impossible. I failed on a daily basis. No, make that hourly. Failure became a constant shadow. My failure stalked me home and impacted on my relationship, which then caused the relationship to falter and start to fail too. I was haunted by nagging criticisms (almost entirely my own). It’s no surprise that I buckled and woke up one day unable to function. Perfectionism gets jobs done well and done well but it also erodes the perfectionist who’s doing those jobs.

I’d like to say that I’m a recovered perfectionist but I’m not. I just answer the nagging voices better and reason with them. I’m typing this in a perfectly tidy flat with a well-stocked fridge and all my tasks up to date. It’s how I roll. However, if I drop down on the sofa with a fit of fatigue then I accept that too. The perfectionism has a pause button. I’m allowed time off for good behaviour.

There’s one thing that’s nagging me at the moment and that’s being ill. I’m good at being ill. I try hard to be the perfect patient. I do the things I’m supposed to. I’m concise and I lap up the praise when a doctor compliments me on my ability to recount my complex medical history. Just one thing though, am I really ill enough? Can I call myself ill when I’m mostly functional? Am I any good at having MS? My perfectionism is deep seated. It’s a work in progress.  

Thursday, 2 December 2021

LGBT+ Plus Hidden Disability

Here's a piece I wrote for a national MS website:

As someone who’s an effeminate gay man, my sense of identity was always something that I struggled with. It was hard to know where I could fit in within a society where everything around me sternly bullied me into believing that life was about meeting a person of the opposite sex and coupling up. Life taught me that as a man, I should be masculine, ideally with a love of sports and an innate ability to do DIY. I just didn’t feel that way and carving out my own niche was never going to be easy.

I eventually found a tribe of people who affirm me, found love/lost love (I did that one a few times) and grew a career in a profession that suited my abilities, where the prejudice wasn’t too overt or rife. My world was sent reeling in 2020 when I was diagnosed with Relapsing Remitting Multiple Sclerosis. What did this mean for me as a gay man and was my experience going to be different because of my sexuality? How would this change my view of myself?

I’m sure some people reading this are thinking ‘But it’s 2021. It’s fine to be LGBT+ (lesbian, gay, bisexual, transgender) nowadays.’ It really isn’t. Things might be easier but we still face discrimination and misunderstanding.

The British Social Attitudes Survey from 2018 found that a third of people still believe that same sex relationships are wrong and they noted that this was also an increasingly vocal minority. In the same year, the National LGBT survey showed that 40% of LGBT people had experienced a negative incident outside of their home environment, such as verbal or physical abuse due to their sexuality, in the previous 12 months. Rates of mental illness such as depression and anxiety are significantly higher, as are issues like substance misuse and self-harm or suicide.

My first reaction on being diagnosed with MS was to trawl the internet for information (from reliable sources, of course). I found lots of stories about or by people with MS, many of whom were inspirational and fascinating. However, there was no one who was like me. Is that important? It really is. Being represented is useful and to see someone you can identify with is a powerful thing. If there’s no one like you around then it’s harder to feel that you belong or have a voice.

Even within the liberal environment of health care, assumptions are constantly made about gender and sexuality. LGBT+ people don’t just come out once to their friends and family. If you get sick then you may have to do this to health care professionals again and again. Unless you want to pretend that your same-sex partner is your sibling or friend then you’re probably going to have to point out who they are and specify your sexual identity, endlessly. Coming out: it’s the gift that keeps on giving.

Also, imagine if you’ve lived your life hiding your sexuality or facing abuse when you’re out and about and then have to accept carers in your own home. How do you know that they’re not from the third of people who think that your lifestyle is wrong? It’s a daunting proposition to open the doors to your private sanctuary to people who may be judging you. It’s taken me a long time to get used to the fact that my persona and mannerisms aren’t appealing to everyone and that this is probably always going to be the case. I’m not sure how I’ll feel if there comes a time when my home is no longer such a private place where I can be myself.

I’m not speaking for everyone. This is my lived experience as just one variety of gay man. For some people, their sexuality might not factor into how they feel about having a serious chronic illness. However, for many people it does. Their sexuality is a facet of their personality and identity on which illness is then overlaid.

If you want to read more about the experiences of LGBT+ people facing serious and advanced illness then look at the work done by King’s College London in the ACCESCare Study. They found commonality in experiences and formulated ten recommendations for both individuals and for organisations.

As for me, I’m coming to terms with the MS. At least it’s a perfectly valid excuse not to participate in ‘manly’ sports or do DIY.


Friday, 19 November 2021

Cleaning Frenzy


There’s a myth that surrounds me and that’s that I love cleaning. I really don’t. I just like clean. There’s a difference.

The act of cleaning is hellish. Something that leaves you exhausted with chapped hands, a sweaty brow, and aching limbs. It’s hard work. Something that should ideally be done by a group of helpful woodland animals and birds like in Snow White. I keep whistling for them but they won’t come. I'm just left in that dress with a broom but no critters. 

I’ve had many cleaning injuries. I’ve slipped in a too clean shower, burned myself, fallen off stools and notably once had a wheeze for a week after accidentally combining two noxious products. That’s one chemistry lesson I won’t repeat.

As a child, I would tidy compulsively. I loved the feeling of order and the calm that this bestowed upon me. By twelve I was earning extra pocket money for the handy household skills I possessed. Wielding a duster and vacuum cleaner earned me a few extra pounds a week to spend on books and tapes (for anyone under forty: they were these annoying things that snapped and got snarled up when we tried to play back music before we had CDs and the internet).

Once I had my own home, I became addicted to the feeling of having cleaned, spending hours swiping away stains and blemishes. That moment when the flat was absolutely spotless and I could rest back with a book, knowing I was in charge. The sense of achievement is undeniable. Naturally, it didn’t stay clean. Nothing does. That’s where the tyranny begins. You can’t just clean. You have to keep doing it, over and over again.

Three weeks of languishing on the sofa left our flat looking decidedly smudged so I took back control today. I took on the beast with a four hour cleaning session. Cleaning is my version of the gym. It's a gruelling workout. I'll be exhausted tomorrow but at least I'll be exhausted in a clean place. 

I often wonder where the hell those woodland animals are when you need them? I demand woodland animals with industrial strength products. Life can be so unfair. 

Wednesday, 17 November 2021

November 2021: Books

 Yep. I'm off again with my book tips. I've been reading an insane amount this year, due to various episodes of illness, so thought I'd share some of my favourites. Here's my top 5 recent reads. 

If you like sinister then this is the one for you. It's reminiscent of Shirley Jackson and Patricia Highsmith. It's the story of Mrs March, an uptight society housewife in Upper East Side New York in an unspecified Sixties type era. She's married to an author but starts to have suspicions about him. It's a fascinating study of someone descending into paranoia and losing touch with reality. I love a bit of creepy. 

Mrs March a book by Virginia Feito. (bookshop.org)

This book is singular in that it uses different genres to tell a story. Starting with a college campus story about an alleged sexual assault, it moves through a Stephen King type horror section, a psychological thriller and a noir crime story. It's dark, compelling but also emotionally resonant and witty. 

True Story: this genre-defying novel marks the arrival of a powerful new literary voice a book by Kate Reed Petty. (bookshop.org)

We've all had those moments. Grace decides to execute a revenge plot as payback for her horrific childhood. It's a funny tale of relentless slaughter. What's not to love about that? Made me laugh. 

How to Kill Your Family a book by Bella Mackie. (bookshop.org)


We all know that Instagram is a toxic hotbed of fake smugness and radiant happiness that's an illusion. This is a tense thriller about an influencer whose lies come back to haunt her. I was rooting for her to meet a grisly fate.

People Like Her a book by Ellery Lloyd. (bookshop.org)

Janet's not happy. In fact she's beyond sad. The thing is. She doesn't mind being sad. It's her life. Then her family start to put pressure on her to try a new pill that will make her happy, just for a day, for Christmas. Really caustic wit and killer one-liners. Loved this. 



I was diagnosed with relapsing remitting multiple sclerosis in 2020 and instantly looked for reassurance online. I’m a social media addict. When I’m too fatigued to leave the sofa then falling into an Instagram vortex will pass an hour pleasantly. I might be confined to my flat but there's a window into the world and a way of reaching out and connecting with other people, even if there's no one else with me. My first port of call was to look for accounts of other people with MS. I was looking for some representation of the illness, hoping to see people who were going through things that I was and find comfort, support.

The first account that I found had the word ‘warrior’ on it. The person had described themselves as an ‘MS Warrior’ as  did the next and the next and the next. The word surprised me, conjuring up images of Xena, the Warrior Princess, in her leather bodice or some Spartan with a sword. Violent images of battles and bloodshed. I found people who described themselves as being ‘blessed’ by their MS or ‘lucky’ that they developed MS, things which I didn’t, and I suspect never will, feel. They recounted tales of how MS was an amazing positive force in their lives that had made them re-evaluate and forge a new and exciting path. I'm an upbeat and positive person, usually full of optimism, but I balked at this. 

The narrative of being a fighter suits some people but it’s not for everyone. It might be empowering for you but for me it feels disempowering. Can I call myself a ‘warrior’ who is fighting MS when there are days when I’ve sat down and cried? Am I a fighter when I’ve been so fatigued that I can’t get off the sofa? Or am I not allowed to do that? I’ve just got to keep fighting? Be engaged in a perpetual war? For me, labelling myself as a warrior would feel like a form of toxic positive thinking that would be reductive and restrictive.

American author Barbara Ehrenreich was unlucky (yes, I dare to say that developing cancer is not a gift) enough to develop cancer and she wrote a book about the tyranny of positive thinking. She was devastated and daunted by what lay ahead of her. She felt sad, which is an expected emotion, part of the healthy grieving process.

Barbara found that she was actively discouraged by people around her from feeling bad and was criticised and bullied online because she wasn’t being positive enough. She was encouraged by the online-community to call herself a survivor rather than a victim. She was told to embrace her diagnosis and look at the positives. She understandably struggled to find many, if any. The experience was devaluing for her and she felt inspired to write about how derogatory the narrative of thinking positively was for her. 

I dared to write on an Instagram post about positivity that, for me, MS hadn't been an overall good thing. It's left me fearful for my livelihood, in constant pain due to nerve damage and afraid for the future. Not to mention the fatigue and nausea. I already lived a healthy life that suited me well. I don't need a disabling chronic illness to make it better. Yes, I've learned that my partner, friends and colleagues are supportive, but I already knew that. As you'd expected, my comment wasn't entirely well received. A vocal minority of people who were posting were outraged that I dared to say that MS wasn't an all enriching thing to have and bit back at me. 

What of the people who ‘lose’ the battle? The people with progressive disability who, regardless of how much they ‘fight’, develop severe progressive disability? It’s a sad fact, albeit one we may not want to think about, that this does happen to people. Are they somehow weaker, failures even? Did they not fight enough?

Of course not. The truth is much simpler. They’re victims of chance, ravaged by a disease that can be crueller for some than others. The positive labels we give ourselves can turn around and demonise others.

This is just my opinion and I’m not saying stop. What I do I say is call yourself whatever you want to. Whatever makes you feel happy. Just be aware that these labels might drag you down one day. You don’t have to always be ‘a fighter’, to be upbeat and positive. You're experience is multi-dimensional. Sometimes you have to accept, go with what you’ve been given and move forward as best you can. Sometimes we have to grieve, feel angry or depressed. It’s part of being human. Sometimes life does present you with something that is actually negative, like chronic illness. 

In the meantime, I’m processing my emotions and dealing with my disease. Just don’t expect to see me wielding a shield. I’m the one at the side-lines of the battle, getting on with living.


Tuesday, 16 November 2021

A River in Egypt


You’d think I’ve had been ready. Fully prepared for the day in January 2020 when the neurology registrar called me and told me that the MRI showed multiple sclerosis lesions in my spine. It wasn’t like they hadn’t been telling me for the past twenty-years that I might have it. I’d even had a confirmed case of optic neuritis with demyelination (stripping of the nerve) in my optic nerve, which is often how MS can first present.

I wasn’t. I wasn’t ready at all. It was like a hammer blow, catching me unaware. Making one of my biggest fears real. Having to confront a rat, being falsely imprisoned or developing a neurological disorder. These are my top three horrors. I also worry about losing the dog, burning down the flat or accidentally killing someone. I worry about a lot of things. Normal everyday fears and full scale tragedies. 

Maybe, the repeated reassurance every time that the MRI scans showed no lesions had left me complacent. Maybe this was why the news left me reeling and moping around listening to Lorde and Lana Del Rey on repeat (to be honest, I often do that anyway).

The signs were there. I’d had a week of euphoria, something that has been noted to be an occasional symptom preceding a relapse. I’d walked around in an uncharacteristic state of blithe happiness, which was a pleasant side effect. Along with this I had a sudden onset of Lhermitte’s Sign (where you experience electric shock-like sensations when you bend your neck forward). I recall thinking this was just like that funny MS symptom that people get and then ignoring it. 

Then there was the big one, the impossible to ignore one, the numbness extending from my toes to my rib cage. A prime giveaway. Yet still I was shocked. I hadn’t even thought about this being an MS attack. I’d happily slid into the MRI scanner without thinking about it, assuming that I had a slipped disc or trapped nerve.

If you’re a healthcare worker then you probably have ideas. Strange ideas. Things that you recall, people you remember. I have a whole catalogue of horror that I can taunt myself with. Being around people with illnesses serious enough to need hospitalisation ensures that you have a skewed perspective. My experience of MS came from years of seeing people with extreme forms of the disease.

I recall a man in his early twenties who was bedbound and had contracted limbs, arms and legs set into hard right angles, often angry and irritable, utterly dependent on people to do everything for him, unable to even hold a glass. A confused older woman who was covered in sores where she’d been confined to a chair. A man who was contorted with pain. These images sit in my head. I struggle with the concept of dependence, with disability, with anything that would change my function and even my appearance. I struggle with the concept of suffering. Who wouldn’t? I instantly considered this to be an inevitable destiny.

The news was devastating but whilst I was still reeling, a colleague said to me (several times, she’s that kind of person): ‘It’s a spectrum illness, remember that.’

It became my mantra. In between listening to doomy women singers, I muttered it to myself. Forcing my brain to re-evaluate and remember that there are lots of people with MS who are still working, still with some independence as well as people who are coping and living with varying degrees of disability. It's a spectrum. 

There is also a whole spectrum of forms of the condition that runs from people who only have one attack ever (clinically isolated syndrome), to people who have an aggressive form of the disease where disability progresses from onset (primary progressive MS). I am in the group with a type of MS called Relapsing Remitting MS. This is where the illness comes and goes, with attacks that wax and wane. These attacks can leave permanent damage (demyelination) where the nerve covering (myelin) is stripped away and nerve signals can't be sent properly. Equally, the damage left can be minimal or temporary. For some people this then goes on to worsen and they stop having remissions (Secondary Progressive MS) and lose some function. 

The nervous system is a hideously complex thing. No two people have the same set of MS symptoms or the same presentation. It’s a spectrum.

Nothing is guaranteed. The other factor is modern science. The amount of treatments to stop the disease in its tracks has increased dramatically, with more than a dozen different drugs now used. When I was a student nurse there was very little that could be done. The life expectancy of someone with MS is now only around six years less than someone with it.

So, my denial? I’m impressed by my skill. I didn’t think that I had the ability to lie to myself so well. It’s a protective mechanism and one that probably helped me through. I like it. Bring on the denial.

My fears are still there, much like I fear burning down the house or losing the dog on the park, I fear this. But it’s fear as a possible case scenario, though, rather than fear of an inevitability. I also still have treatment options. I also still have hope. 

The future is uncertain and the disease may or may not be managed, I may become more disabled, I may not. In the meantime, I have to adapt and manage with what I’ve been given. Isn’t that what life is about? Adapting. I’m trying hard.

For more information on types of MS: The MS Trust

Monday, 15 November 2021

Man Interrupted

So, I'm back. After eight years, I've decided to start writing the blog again. Here's why:

Originally, I wrote this to write about my past mental health issues, LGBTQI+ matters and as a repository for the weekly observational articles that I wrote for a regular weekend column on TheGayUK website. 

My intention in writing was always to entertain but also to inform and try to show people that if they had bad experiences, then they aren't alone. I wrote unflinchingly about the negative stuff as well as writing foppish fluff pieces. I found it cathartic to write about my struggles with alcoholbeing in an abusive relationship, my views on death and dying, my issues with poor mental health, as well as doing lots of posturing and spouting my silly views plus sharing books and poems that I love. I suppose it worked as free therapy but I also felt that if my experiences could help someone else in even a tiny way then it was an added bonus. I also like making people laugh too. 

Through writing this, I ended up being featured in a book for the Born This Way blog, writing articles for the SANE and Black Dog Tribe sites, being featured online via a well-known LGBT+ mental health blogger in New Zealand and also by an Australian TV producer, having a weekly column on TheGayUK site and writing an article for a national website about normalising death and dying. 

Reading it back is a discombobulating experience. It's like reading me but a slightly different version, from ten years ago. Some of it makes me wince. Some of it makes me feel proud that that version of me felt able to be so open and honest. Some of it makes me laugh and some posts (but not many) I've now deleted. 

I was way too candid about some of my dodgy dating experiences and didn't always try hard enough to hide who the accounts were about. Sorry, people. I'm sparing your blushes now. 

If anyone finds a dodgy old post that crosses a line (either linguistically or in terms of taste then please let me know). 

I'm bearing in mind the line from The Go-Between, 'The past is a foreign country: they do things differently there.'

The blog fizzled out. Life became too frantic to find time to write. London was full of temptations like art galleries, long walks in the city (we've walked a lot), and theatres. 

If you don't know me well, then here's a summary of the past eight years:

1) Moved to London and love it here. We have a flat in South East London with a big leafy garden and I have a job at a big London hospital. This place also suits my clothes. 

2) Went to the theatre way too much. Started theatre reviewing for Londonist website as well as spending a year doing the public panel for the Olivier Awards. I've cut down dramatically now (thanks lockdown and MS) and stopped theatre reviewing too. 

3) Stayed with Paul (ten years and counting) and we mostly don't fantasise about killing each other. 

4) Turned 50 and became a step-grandfather (ouch) via Paul's daughter, who also lives in London now. Lost more hair. Battled with a small paunch. Lost a lot of my prostate gland (how middle-aged is that?)

5) Became ill with a hard to treat bacterial prostate infection that's resulted in nearly three years of antibiotics (including 3 months of them at home via a drip), two hospital admissions, four procedures under anaesthetic, multiple tests and a lot of time off work (annoyingly). 

6) Carried on working as a nurse (when I'm not off sick, which has been a lot lately. Sorry NHS)

7) Finally brought a miniature poodle (Lottsmoor Miradel Nutmeg Frida Kahlo: also known as Frida)

8) Finally got diagnosed with Multiple Sclerosis after over twenty years of having suspected M S attacks and I've now started treatment to try to stop it progressing. 

9) Watched an incredible amount of TV. Ignore those silly old posts where I pretended that I didn't. I was posturing, playing a role. I'm still about Radio 4 and books but TV is a god to me right now. 

10) Started writing fiction again and completed a full length psychological thriller. Now trying the (almost impossible) mission of finding a literary agent. I'm now writing novel number two. 

11) Stayed, mostly, mentally well and carried on not drinking alcohol or eating meat. The cigarettes are gone too but I'm a sneaky vape addict now. 

I suppose it's fact number 8 that's spurred me on to write on here again. MS is a strange and isolating illness and hard to explain to people. If I can write about this then it's got to help someone (as well as me). 

If I can write about MS and help people understand just a tiny bit of it, then that's good enough for me. My work here will be done. 

The silly blog name? I suppose I felt like Susanna Kaysen in her 1993 book 'Girl, Interrupted' (or pre-shoplifting Winona Ryder playing her in the 1999 film version). I felt like my mental illnesses ripped me from life from time to time, interrupting me and setting me off kilter, isolating me from the world. 

Fast forward almost a decade and I'm interrupted again, only this time by my treacherous body. Hopefully, it's just a pause. I'm trying hard to press play again. 

Hard Work Never Killed Anyone


Article originally published online in 2010 on the Sane website. Updated 2021:

I remember being aged 21 and sitting in a lecture in college. The lecturer was talking about stress and how it was commonplace amongst nurses. She talked of nurses becoming burnt out wrecks, depressed, frightened and barely able to feel or function, sometimes unable to come back to their previous lives as they crossed an invisible bridge condemning them to lifelong misery and despair and an enforced change in career. I felt faintly queasy, anxiety stirring in my belly. I felt certain that this was my destiny and hadn’t a clue how to stop it. In the end I didn’t.

I always knew I’d probably grow up to be a little bit mad. I anticipated suffering and angst as a given in my life. I have a good lineage, depression and anxiety stretching back through the generations. My childhood was odd, which can be a sure fire predictor, and I was prone to worry, obsession, rumination and setting myself unachievable goals in life, right from an early age.

I trundled along successfully, balancing my worry with activity, believing that hard work could cure all my mental ills. A minor blip hit me in my teens and I developed nihilistic tendencies which outran the normal teenage gloom. It passed in time though and I weathered the moods, struggling through periods of gloom and nervous excitability. I knew I thought too much about things and labelled myself as a “person of a nervous disposition”. I was the kind of person roller coasters urged to not travel, along with the pregnant and infirm.

I knew the answers and knew the solution. I could cope by being busy, working hard, walking a lot and keeping the house unhealthily clean at all times. I knew that if it all came crashing down and I did succumb then there where pills. I was a nurse; pills were the answer and would cure me if it ever all caught up with me. I was sure of that. I also suspected I had an overactive thyroid. I liked the thought that there was a hormonal imbalance making me a bit nervy. That it was just chemistry, rather than something more holistic. I'm hot most of the time and struggle to gain weight. It was a logical diagnosis but one delusion which I was finally robbed off when a thyroid function test showed I was completely mid range normal.

The first bad attack came in 1999. I was 28, my relationship with a much older man was floundering and getting increasingly uncomfortable to be in and work was grinding me down. I felt a strange shift come over me. I was starting to get long periods of feeling afraid and edgy, uncomfortable in my own skin. I’d pace the house, not sure where to put myself and worry about why I was worried. I also lost the ability to feel much pleasure. I enjoyed precisely nothing. Trips to the theatre were an ordeal, novels I liked were dull and uninvolving and I hated to talk to anyone. I felt like I was wading through treacle trying to work. I’d always believed that hard work was the answer. I was full of scorn for colleagues who went off sick with stress or anxiety, wondering why they didn’t just work harder to take their mind off it.

My medical model of thinking made me think there was a pill for every ill and I trouped off to the doctor. Eight weeks of inadequate counselling from a woman who I disliked, a prescription for Paroxetine and I was better within two months. Within three months I was wondering why I hadn’t been put on these drugs along with solids at the weaning stage. I felt amazing and was reassured that I’d been right all along. I had a chemical imbalance. I ignored the other evidence. There was no way that the abusive relationship and working on a chaotic hospital ward contributed at all. It was all about the chemicals. I took them for six months as suggested. I sweated a lot, felt sick a lot initially and found it was impossible to have an orgasm. Who cared about that though? I was enjoying life again.

Eighteen months later it all went horribly wrong. I changed my job to go to work on a cancer ward, left my partner, found a new partner, lived on my own for the first time, moved in with the new partner after six months, started working shifts in the hospice on my days off, shopped a lot, decorated the flat frantically, drank a lot, went out clubbing a lot, took lots of Diazepam (thank you G.P., I loved you for those little yellow pills), slept very little and worried all the time. I missed my dog that I’d had to leave behind. I missed my lovely old house. I also re-started and stopped taking the Paroxetine, resulting in strange side effects, numbness and a limp. I was referred for neurological investigations due to limb numbness and suspected multiple sclerosis which terrified me to the point of nausea. This time the Paroxetine didn’t work. My mood didn’t lift in spite of the little white pills.

It took a few more months but eventually I learned to understand why people went off work sick with stress. I learnt the hard way. I started waking at 4am with feelings of doom and dread, lying in bed moving my legs around, tossing and turning. I was smoking 30 cigarettes a day, drinking vodka every night and starting to lose all perspective. Eventually, I woke up one morning and it was if a blind had been drawn down. I couldn’t make myself get out of bed. I cried on and off for weeks. I lost a couple of stones in weight. Every time I tried to eat I retched, the food sticking in my throat. Even if I felt hungry, which was rare, I couldn’t decide what to eat or summon the energy to prepare it. I couldn’t talk to anyone or enjoy anything. I was firmly ensconced in this mental fog. Everything was bad. I was bad. The world was bad. It was never going to end.

The house became dusty and smeared. I grew thinner and more ragged round the edges. I was unable to make myself do anything. I couldn’t wash or get up in the mornings. I’d get up and sit in front of the TV, crying and worrying till about 4pm before I could muster the energy to wash. Time hung heavy. Everything hurt. I felt like I had no skin. There was a complete vacuum in my life. I’d get the odd good day but these were brief and seemed cruelly snatched away when the next day I’d wake up with the cloud hanging over me. On the good days I was completely unable to understand why I was like I was the previous day, scolding myself for not eating, cleaning up or washing myself. I found myself incomprehensible which was baffling. My G.P. upped the pills again and again till I was on three times the original dosage. I didn’t improve much. Worryingly, I was certain this wouldn’t ever end.

It did end, of course, but it took a long time coming. Three months later I returned to work, thinner, slower and still experiencing bouts of crying and despair. I was functional but remained a bit of a shell, feeling flat and numb a lot of the time. I spent lots of time in bed after work, retreating under the duvet the minute I walked in the door. I attended group therapy which I found surprisingly fun and rewarding and eventually, six months later, I felt I was back to my normal self and back on a reasonable maintenance dose of anti-depressants.

Sadly, I learnt very little from this time. I avoided thinking about it. I felt traumatised and baffled that I’d lost months of my life and spent them mooching round in a dressing gown, sweaty and malnourished. It was all behind me though and I made a conscious ever never to think about it again.

Four years later I felt that my life was a resounding success. I was working as a ward manager on an acute ward. I was putting in up to 60 hours a week at times but loved my job. My relationship was fine. We argued a bit and my crazy working hours put a bit of strain on us but it was mostly good. I had a lovely home which I spent my days off scrubbing and cleaning and decorating. I was well nourished, non-smoking and enjoying life on the whole. I couldn’t see what was wrong. I earned good money too, had savings for the first time ever and went on holiday five or six times a year. Yes, I spent sleepless nights worrying about random things. I was plagued by mystery ailments and pains. I was also irritable and tired at times, finding it took me two hours or so to unclench my fists after a busy shift at work. It was fine though.

The next episode was worse. I woke up one day and it was the same again, only worse. I spent six months off work. I panicked, I cried, I took pills galore, I starved, I fretted and lay awake watching the clock move slower than it ever had in my life. I hurt all over. I had more therapy, a C.P.N., cycled through four kinds of anti-depressants, three kinds of sleeping pills and a bunch of sedatives. I saw three different psychiatrists. I knew this time I was finished. I’d never work again. I really hoped I would die but didn’t have the energy to bring this about myself. I knew that I’d never feel pleasure again and regain my old life. My relationship would end (actually it did end a few months later, I’m not always wrong). It was a bad time. 

It improved, though. I did return to my job. I did get better. I did regain myself.

That was fifteen years ago. I’m well now. I like to think I’ve learnt a little. I really hope so. I don’t fully understand why I get so depressed. It’s too complicated to unravel. I know my triggers and what affects me. I know what to avoid (including alcohol). I’m not sure I know yet how to slow down and relax enough. I spent four years in therapy. I’m still taking a maintenance dose of anti-depressants. I probably always will. I see it like a chronic physical condition, like diabetes or asthma. It’s deadly and horrible and I can’t forget I’ve got it but hopefully it’s mostly manageable.

I’ve survived traumas and upheavals in the intervening years. I got through the upheaval of a relationship breakdown, romantic disappointments, changes in my job, house moves, moving to London, bereavement and stress and I’m still tottering along. I hope it continues.

COVID Chronicles

Have you ever fallen asleep on a wintery afternoon and woken up in darkness, unsure if it’s morning or midnight? That’s my life currently; discombobulated and perplexing. 

I have an unusual job. I’m a specialist palliative care nurse. I see patients in hospital who have life limiting illnesses like cancer, heart failure or dementia and assess their needs, talking through how they’re feeling, advising staff how to manage their symptoms and liaising with their relatives. Some of them are imminently dying but by no means all of them. Some of them are having active treatments like chemotherapy to manage their conditions and will live for weeks, months and even years. 

 Overnight my role has changed but it’s also the same. I’m now spending most of my time with people who have COVID19 and are dying from this. The familiar wards are no more. Neurology is a COVID19 ward. Haematology and orthopaedics and more: all the same. Instead of long conversations by the bedside and direct chats with their visitors, I’m now dressed in a mask and visor, leaning over the beds of people who are mostly semi-conscious. Instead of complex issues with pain or nausea, with their aspirations and concerns, my main worry is now breathlessness and agitation, with sedatives and opioids being the main weapons of choice to fight this. 

They’re anonymous strangers in corporate nightwear, often with no belongings other than the clothes they were wearing when they were loaded into an ambulance. They have no one coming in, unless they’re in their last few days when they are allowed one visitor. I don’t quite know what to do but conversely am familiar with this. The people are mostly the same people we would often meet, people with end stage illnesses who would not survive the trauma of ventilation on ITU. 

Decades of nursing have left me undaunted and I know I can do this. I’m used to death and I know how to manage the process, how to soothe and minimise suffering even with new parameters and different ways of working. 

There are flashes of light that I carry with me. A Speech Therapist, drafted into unfamiliar territory, caring for someone who was dying with competence and compassion, an elderly woman with advanced cancer who pulled through. 

I dislike the phrase ‘the new normal’. I refuse to accept this and to me, this is ‘the new temporary’. 

 Picture: Hurricane Nurse by Richard Prince 

 This was a piece I wrote and read out on BBC4 in May 2020: COVID Chronicles

Sunday, 14 November 2021

Danger UXB

Bombs usually go off when you're least expecting them. For me it was Christmas Day 2019 when the ground shook and the buildings were decimated.

Maybe not so much a bomb, more a stealthy assassin. It begin with a whimper but ended with a bang. Like the first whistle of a Doodlebug passing over, it all began in the most innocuous way. 

I dislike Christmas. I'm a middle-aged gay man with no children so that smiling faced delight of a Norman Rockwell painting has never come my way. I've never seen it as a holiday time as I'm a nurse who always felt obliged to work the late shifts, so that my family orientated colleagues could have the time off. I have no religion so feel no fervent ecstasy about the birth of a Messiah. I also don't eat meat, so no turkey or pork wrapped in pork with a side order of pork. I've had migraines since childhood so brightly wrapped chocolate is out and I don't drink alcohol (more on that one later). I also don't like rampant consumerism, shops crowded with amateur shoppers and being told I have no choice in things (i.e. do this or else we'll call you a Grinch or a Scrooge). 

With a cunning stroke of cruelty, the bad things started on Christmas Day, my least favourite day of the year. I was sitting watching TV when it started. A quiet numbness in my left foot, a frostbitten feeling. I recall watching the annual Agatha Christie with my dog by my side and sitting with my foot between my hands, trying to rub some life into it. 

My philosophy is that if you ignore something for long enough then it might just go away. I ignored it steadfastly as over the ensuing days the numbness crept up my left leg, reaching first my knees, then my thighs and eventually spreading past my buttock and into my lower back, ending just below the rib cage.  I could still walk, albeit with a minor limp, so I carried on going to work. In retrospect, I wonder if I subconsciously knew what was coming. The random MS scares of my twenties and thirties had left with some knowledge of the illness but a complacency as previous tests were always negative. 

You can only adopt the 'ignorance is bliss' philosophy for so long and I eventually succumbed, calling the emergency doctor on a sleepy Saturday between Christmas and New Year. The on-call GP called me back and told me she was calling an ambulance. I asked her not to as I was walking the poodle round the park when she called and instead made my way to the Accident and Emergency Department in an Uber. 

Sixteen hours later, I was released, with a pending MRI scan for a week's time. Within ten days, the bomb had well and truly shaken my world, as I was found to have scar tissue (lesions) throughout my neck and lower back. I had a condition called transverse myelitis (inflammation of the spine, in layman's terms). Multiple Sclerosis was here and I was shaken by the blast.

Whilst the feeling gradually came back in my leg over the next three months (to be replaced by a burning pain), my life was about to change. The regime of going to the theatre two or three times a week, long walks through London at the weekend, late nights reading and frenetic housekeeping was scattered in the debris. A new life of attacks of nausea, fatigue and random pains was here, at least for now. 

Adjustment is tough (hence the term 'adjustment disorder') and I'm still afraid at times, confused and worried for the future. Other times, I'm sure that I can manage this. The best times, I don't think about it at all. 

I think about my flat. My flat in London is a 1950s beauty on a street of Edwardian villas. Large square rooms filled with light. A big private garden. I love my flat. The reality is that this flat wouldn't exist without a bomb. I also wouldn't be able to afford to live in such an affluent area. The flat exists because a World War II bomb obliterated four houses and in the crater this building grew. 

Bombs are never positive but you can make a life in the debris.