Sunday, 2 January 2022

The Patience of Angels




There's this thing in modern life where nurses are on a continuum. We hover between good and bad. To use the precise language of our accusers we're 'angelic' or 'demonic' (the latter usually only pops up when a serial killer is revealed amongst our midst).

The tabloid press, the government, some woman on the radio who had an aunty Joyce who a nurse was mean to. These are the people who control the perception. The graph soars up and down. One week we're over-educated, grasping for money, unwilling to get our hands dirty. The next we're workshy and always off sick. Then suddenly, we're being held up as paragons of virtue and people are banging saucepans on their doorsteps. We're on murals and praised in Parliament (but not bestowed appropriate pay rises). It's a wave of joy. 

It's a dizzying ride. With the pandemic we've been pretty much riding the heroic vibe which is lovely. Lovely but wearing. How do you respond when someone calls you an 'NHS hero' or a 'pure angel'? I've perfect a brisk nod and half smile that I think covers most eventualities.

This may sound ungrateful but I'm longing for some flak. Bring back some criticism. Just a hint. Nothing too drastic. Something I can argue against. Being an angel is tough. We just glide about in a sepulchral glow, being benign. I want to fight and scream. 

Slam us for our sickness levels and I can talk to you about the pressure that nurses today are under. Tell me about Aunty Joyce waiting half an hour for a bedpan and I can tell you about the drastically poor staffing levels and complex workload. Tell me we're overeducated and I can talk for hours about the current state of nurse training. 

I don't want to sound ungrateful (we heroic angels don't do ingratitude, of course) but isn't it time we were rounded, human people again? Ones who can kick back and argue.

We're waiting and we've got a lot to say. 

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)



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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. 

Toxic

 


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