Trying to be normal, when normal is everything I am not

I am writing this piece on around six hours of sleep since the start of the weekend. Today is Monday. I am a zombie. Emotionally numb, yet physically, and unfortunately, far from it.

I’ve spun so many plates in what would have been a period of rest for many that the room now appears to move a little if I close my eyes. My balance is off. I feel nauseous from the exhaustion. Unsure of my footing, much like my relationship with arthritis.

Everyone assumes our condition is all ‘pain and swollen joints‘, but the reality is far more complicated. There are many layers to this onion of so-called ‘invisible illness’. Which, as I sit on this bathroom floor scribbling this down, sweat pouring from my brow, unsure if it’s from the pain or lack of sleep, doesn’t feel very invisible to me. Not if you’re in this windowless room, anyway.

For those who haven’t caught a glimpse – a bitter taste of this world through either experience or the support of others, let me cast some light on this place so rarely seen and talked about far less.

Pain is but a spark in the fire

It’s obvious why pain is the thing most associated with our condition. On the face of it, it’s the most obviously impacting element of arthritis in our lives, but it’s also the most relatable element of our disease. Virtually everyone has experienced physical pain or injury in their lives, so it provides a solid platform of understanding when trying to discuss the experience of arthritis with others.

Remember that time you *insert painful event here*, well imagine feeling that constantly, in multiple places‘ is something I have caught myself often saying. But upon reflection, the pain is just the spark. A minor inconvenience, similar to a nagging feeling of guilt after a poor personal decision – it’s always there, chipping away at me, wearing me down, but it’s not that intense feeling of burning in my joints that’s the problem; it’s the situation and everything that comes with it. It’s everything that comes with pain that impacts my life the most. Allow me to explain.

So tired of being tired

Pain is the thing that we tell people is the problem. As frequently as somebody with chronic illness says ‘I’m fine when they’re really not. It’s the easy answer, but it’s only one side to the story. I’ve already mentioned the impact on my sleep. I would take the pain every day of the week (if I had a choice!) over this horrible part-intoxicated, part-out of body experience that seemingly comes with extreme exhaustion from days without proper sleep. That sickening feeling of nausea in the pit of your stomach, accompanied by sweats, thirst and an inability to order your thoughts. It’s a feeling I first experienced from high school sleepovers and parties, where you’d operate the next day feeling like you were barely alive. The difference between those parties and deprivation of sleep due to pain is this lasts far longer than a weekend, there were no stories that you will recount with a fondness for years to come, and nobody had any fun.

Those nights are some of my worst experiences with arthritis. From feelings of separation and loneliness in hospital wards as a child, where I had nothing to entertain me other than the gossip I could overhear from night staff whilst every unfamiliar child around me slept, to today, where I sit alone downstairs and watch the early hours pass as my family sleep. Wondering how on earth I find the strength to be a dad, a husband, employee or simply a functioning human for another twelve hours without crashing my car or falling down the stairs.

It’s not the permanent pain from our conditions that all too often brings such tragic and upsetting ends to people’s struggles. It’s the isolation—the loneliness. The feeling like nobody understands and the guilt you place upon your shoulders for not being all those things you so long to be if you just weren’t so f*cking tired all the time. The guilt eats away at you, like water dripping onto rock over thousands of years. The missed events, those days you have to coast playing with your kids because you have nothing left in the tank for the plans you originally made. All those times you didn’t smile because even that hurt your face.

Like the water, even the smallest, most delicate things leave their mark if given long enough. And after over 25 years of living with arthritis, those thoughts and feelings have left their scars. Huge cavities that still trip me up today.

Trying to be normal

With that little peek behind the curtain into this dark, windowless room, filled with sweat, tears and isolation, here comes the issue. First and foremost, we talk about our pain. I do it myself, to the point where I’m fed up with hearing my own complaining. Then occasionally, we maybe talk about fatigue. However, my experience is it’s not well understood – with people assuming you’re just ‘a bit tired‘. Finally, we perhaps mention the pills or swollen joints – and this is where the assumptions come from.

Yes, there are idiots out there. A minority of people who discriminate and hate, but many of the assumptions we encounter in everyday life come from a good place. Hence, the bits we talk about. So when I call in sick for work with ‘pain’ because I don’t want to have to explain or make somebody uncomfortable with details of depression, anxiety, fear and how I cried in the bathroom so my son didn’t see me upset, I am, of course, fuelling the assumption that pain is my biggest problem, when it really isn’t.

So nobody outside of this windowless room knows the struggle that goes on within—the plate spinning. The multiple layers of complexity that come with living with a variable condition, which means that today I can be out jogging and tomorrow writhing around in agony, unable to walk. The mental health strain of all that uncertainty – not just dealing with pain, but managing lack of sleep, cancelled plans, missed opportunities and living in constant fear for your career and family’s financial security.

So when we talk about arthritis and similar conditions being invisible, it’s because, in my experience, we’ve made them as such to try and be normal. To avoid unnecessary attention, certainly in my case. But normal is simply conforming to a standard – an unwritten majority expected behaviour. Well, I’m trying to set a new one—a normal where we talk about our challenges, whether people feel uncomfortable hearing them or not. As sharing these experiences, educating and kicking open the door to these windowless rooms to discussions and questions is the only way to change attitudes.

This is why I advocate.

Joel (‘vs Arthritis’) Nelson – An introduction and why I advocate

An awful lot has happened for me and my campaigning in the last two years. What started basically as an online journal about my experiences, has led to me having tens of conversations every single day with thousands of arthritis, chronic pain and mental health patients, parents of kids with JIA and even doctors and pharmaceutical companies.

In year one, I called myself a ‘writer’. Year two an ‘advocate’. Now, with the launch of Pain.Company and as I continue to add to my list of ‘ambassador’ and ‘patient leader’ titles, I don’t even know what all this is anymore! 🙂 Therefore, I figured that all the new people following me on social media, joining my Facebook Support Groups or stumbling across my writing or work for charities must have a lot of questions too – so here is an introduction to me and ‘Joel vs Arthritis’ at two years old.

My conditions

Juvenile Idiopathic Arthritis (JIA) – Onset 10 years of age. Diagnosed 12 years of age.

Psoriatic Arthritis (PsA – but referred to as Psoriatic-associated JIA due to me being under the age of 16 with initial arthritis diagnosis) – Onset early 20’s (although rashes were there in my teenage years without being linked). Diagnosed in my late 20’s. I also experience psoriasis and palmoplantar pustular psoriasis under this banner.

Chronic Pain/Neuropathy/Depression/Migraine – we’ll come on to that another time!

My awareness story (in short)

I have lived with arthritis most of my life, with onset shortly before my 11th birthday.

At the start of 2019, after years of planning around my health, I became a dad. This unfortunately also coincided with a short-notice enforced treatment change by my local authority, which took me from a rugby playing, long-distance running, fit and healthy shining example of what you could do with well-managed arthritis to being back on crutches, sometimes, stuck in bed for days. It devastated me. I lost touch with friends, lost my independence and worst of all, significantly impacted my young family at the most precious of times.

After some dark months, where the setback and pain impacted my mental health to dangerous levels, I created my blog, JoelvsArthritis.co.uk, to share my experiences on the advice of family and doctors. What started as a personal diary quickly became a vehicle to raise awareness and advocate for those living with arthritis and other autoimmune conditions.

I had spent 20 years hiding my health challenges – simply changing hobbies, social circles or picking up sticks and moving on with each passing flare and remission cycle, rather than explain what happened to me or where I went. It took becoming a father for me to find my voice.

The momentum of it all has shocked me. I have written for several leading autoimmune and disability charities in my short writing career, been published in print, and am an advocate and ambassador for a number of organisations.

Specialising in writing about parenting with a disability, chronic pain and mental health, I hope that my candid, no-filter accounts of living with chronic illness will make a change in both attitudes and support for those living with autoimmune disease.

In 2020, the Joel vs Arthritis Podcast was launched, which is available on iTunes, Spotify and wherever else you listen to podcasts. In 2021, The Pain Company was launched, a clothing brand to raise awareness of chronic pain and chronic illness and give a voice to the millions living with daily, relentless pain.

My advocacy reasons

After years of planning around my health, I became a dad in January 2019. The same month, people like me with autoimmune conditions in England were informed that we were being switched from Biologics treatments to ‘Biosimilars’ as part of an NHS cost-saving move.

We were given little notice – just two weeks between a consent form thrust under my nose at a routine appointment and the change. However, the information we were provided clearly stated that we could switch straight back should there be any adverse effects.

At the time, I was a shining example of what biologics could do for the quality of life for people like me. I was in a wheelchair as a child – the prospect of biologic therapies not only gave me hope through my childhood, but when a flare became out of control in my 20’s, and I finally gained access to them, they changed my life.

Within two weeks, I was pain-free. Within four weeks, all of my psoriasis rashes had vanished! It was incredible. I promised my doctors that I would make the most of the opportunity, and I did. Within a year, I had dropped 25kgs in weight, played competitive sport, and ran half marathons.

Within a month of the switch, I was in agony. Then the rashes returned. Despite the promises of switching back, it took me 11 months of fighting and crying in doctors rooms to get back to my original treatment. But by then, it was too late. My first year of parenthood had been tarnished—harrowing experiences like not being able to carry my son. Worse still, two years on, I remain in chronic pain despite my arthritis being back under control.

I don’t want anyone to go through what I did. I don’t want anyone to be misled like I was. We need to consider more than inflammation markers, x-rays and £s. I advocate to be a better role model for my son and enact change as to how people’s individual health is managed – where no number on a spreadsheet should overrule what’s best for the individual’s health, career, relationships and mental health.

My advocacy summary

My advocacy continues to evolve, sometimes monthly – but if I had to describe my work in one line, I’d like to think I am known for my brutal unfiltered honesty, my willingness to leave everything on the table as I detail life with chronic illness and parenting, tackling difficult subjects and my enthusiasm to engage and converse with my audience.

What started as a blog, documenting my personal experience, quickly became being asked to write articles for organisations such as charities and health institutions. I discovered I had a writing talent I never knew was there.

Within a couple of months, I discovered through a wave of emails, messages, and support that thousands of people were out there, just like me, before finding my voice, feeling alone, isolated, and unrepresented. With this, I soon started writing not just for my own personal well-being but also for these people.

Now, I write with two audiences in mind – those feeling alone, suffering in silence as I was, and those who have no experience or insight of arthritis and chronic pain, who think it’s all old age, inevitability and swollen joints. So every word I write tries to change those perceptions whilst letting those with arthritis and pain know I see them, and I fight for them.

Today, my social media platforms have replaced my daily life blogging, as my audience has grown. Most of my spare time is now spent being an active part of the arthritis and mental health community, participating in campaigns, championing the work of charities, being interviewed for podcasts/radio as a guest, or hosting my own podcast to raise awareness and writing pieces in my raw style to prompt conversation around certain events, topics or awareness days.

I also run multiple Facebook support groups and am an ambassador for a growing list of charities, organisations and initiatives – of which I hope to expand on.

I have no plan – I go where I feel my voice is needed the most with my advocacy work. I hope that continues.

My proudest advocacy moment

My first published article in print takes some beating. I stared at the magazine for over an hour! It was probably the moment I realised my story could be so much more than just ‘my story’ – it could be a conversation starter that prompts change. That brings people together. That alerts people to something they were completely unaware of. That’s pretty special – and inspiring.

I was fortunate enough for that moment to come very early on in my advocacy journey, so I hope there is much more to come for me – but it unlocked a door in my head and set me on this path, and therefore has to take pride of place.

My motivation

My son.

Before I became a parent, I hid my health challenges. I battled through the good and the bad days, put on a brave face – played the part of the fit and active sporty guy who also played in a band—the guy who had lots of friends and was never home.

Then when I flared and lost my mobility, I burnt everything to the ground. For me, back then, it was easier to quit that hockey club or stop playing guitar in that band and resurface a year or two later as a cyclist or a member of another club than try and explain to all those people why I had to cancel, why I disappeared, worse, why I could no longer walk, let alone run.

I’ve tried 100 different hobbies in my lifetime, living a life that resembles a series of chapters with no common thread – but it means I’ve lost a great deal, too, really good friends being the primary point of pain.

I’d like to think that the medical experience I had in 2019 alone would have pushed me into finding my voice eventually. But, still, I suspect it would have, in fact, pushed me further down that dark hole of isolation in order to try and protect myself from the explanations, the ‘isn’t that what old people get?’, the uncomfortableness and swallowing of pride.

However, I know that becoming a father changed something in me – particularly in those unexpected dark days as I adapted to carrying him up the stairs whilst on sticks. It turned almost certain anger and bitterness into a purpose—a motivation. A desire to change personally and to try and make change for the world my son would inherit.

I wasn’t proud of who I was back then – all twisted and resentful, looking for someone to blame for trying to fix what wasn’t broken medically, the thief that stole my freedom. My social life. So I sure as hell knew Dylan wouldn’t be proud of the person I was becoming either.

I turned the darkest period of my life into something I can’t wait to wake up each day and work on – and I couldn’t have changed a habit of a lifetime without my beautiful boy.

Titles held

Psoriatic Disease International Ambassador – IFPA (August 2021 – Present)

Rheum for Inclusion Advisory Board Member – National Rheumatoid Arthritis Society (July 2021 – present)

Patient Ambassador – Ampersand Health (May 2021 – present)

Owner – The Pain Company (May 2021 – present)

Ambassador – WORD Day (March 2021 – present)

Podcast Host – ‘Joel vs Arthritis’ Podcast (December 2020 – present)

Writer and Community Advocate – Health Union (March 2020 – present)

Partner organisations

(who I have worked with to raise awareness)

Health Union

Psoriasis Association

Versus Arthritis

National Rheumatoid Arthritis Society (NRAS)

JAR Project

WORD Day

NASS/AS One

Arthr

International Federation of Psoriasis Associations (IFPA)

Support Groups Run

https://www.facebook.com/groups/joelvsarthritis – Arthritis and Autoimmune Support Group – A private information and support group for anyone interested in or affected by arthritis and other autoimmune diseases.

https://www.facebook.com/groups/paincompany – Chronic Pain Club – A public group for those in chronic pain to support each other, share tips and meet others that understand – by the Pain Company

https://www.facebook.com/groups/chronicillnessdads – Chronic Illness Dads – There’s a Facebook group for every illness, but what about dads? Whether you consider yourself disabled or not, if you have a long term health condition and somebody calls you dad, this is the place for you! A private group.

Socials

You can also find me:

Facebook: https://www.facebook.com/joelvsarthritis

Twitter: https://www.twitter.com/joelvsarthritis

Instagram: https://www.instagram.com/joelvsarthritis

YouTube: https://www.youtube.com/channel/UCZrEJm2eWSSpXx8qMTjdgWA?view_as=subscriber

Get in touch

If you’ve gotten this far and think I can help your cause, event, organisation, write freelance for your publication, would like to get a quote from me or permission to use an article. Then get in touch here.

If you’d rather send an email: contact@joelvsarthritis.co.uk. Please see my portfolio for examples of my work for third parties.

Disclaimer: I talk candidly about my personal health journey, but I cannot help you personally with your health issues. My contact forms and email are not for medical support. Please contact your GP for medical assistance.

Why am I sad?

It’s been some time since I wrote anything that wasn’t a poem or a social media post. And that’s telling in itself.

I’ve been struggling over the last few weeks with what I can only assume is depression. There is no rhyme or reason to it. I have nothing to be down about. On the contrary, I am grateful for what I have and who I have around me. I’m not grieving for what I have lost through my chronic illness like I was last year – or at least I don’t think I am.

So I wanted to write something down. Something that tries and answers the “why are you sad?“, “you’ve got so much to be happy about” and, worse, “cheer up” comments and messages I’ve been receiving all week. Of course, I won’t be able to answer those naive and sometimes insensitive comments. This article runs the risk of being nothing more than the ramblings of a (currently) miserable man – but what I hope is that it offers some insight into what so many millions of people experience on a daily basis—the torturous rollercoaster of depression and the often fruitless quest to try and understand why.

Why do they leave?

It is evening. The early summer sun is glowing Jaffa orange through the grubby window of an unknown train. On an unknown journey. I am sitting with my wife, her best friend – with my parents across the aisle in an adjacent ‘table seat’. I do not have the luxury of the additional space. There is no suggestion of my son being in this scene. I feel trapped.

Soon, everything starts to unravel to the beat of the tracks below as the pace of the train increases—Da-dum, da-dum, da-dum. Suddenly, a beautiful evening has turned into friction. Everyone is angry at me, but there are no words – just looks – frowns and taut lips, the occasional wag of a judgemental finger. This new atmosphere pushes me into my ever-narrowing seat that by now is holding me in place. What did I do? What have I done?

In the blink of an eye and with the flash of the now white-hot sun that melts the train window, everyone gets up and starts to leave. I don’t know where they are going. I can’t stand up. I don’t know why they are leaving me – but they are leaving because of me. Another flash of the ever-closer fireball, and instantly I am alone. The train is empty except for some scattered papers fluttering in a breeze of unknown origin and a few abandoned belongings in the apparent rush of strangers and loved ones to get away from me.

One of these papers floats beautifully back and forth as it descends onto my lap. It reads, in an unknown handwriting, “you are not enough”.


And this is how I start my day as I write this. Sometime around 5am. I don’t have these dreams when I am well. So I share that experience to explain how depression is not something you can escape from. It’s exhausting. Even in my dreams, I am failing, repulsive or unwanted. You cannot get away from your own thoughts – you can only buy a few precious moments distracting yourself from them throughout the very long day and even longer nights.

The other reason I share this is to try and get across how terrifying the experience can be. Obviously, this was a dream, but it doesn’t end when you wake. That same feeling of being trapped, enclosed, unable to be ‘good enough’ remains – throughout your waking hours and into the next nightmare. After several days, it’s sometimes hard to know where the dreams end and the days begin.

How does it start?

How does all this manifest? Well, there’s the real headscratcher as it’s seemingly random. After a lovely sunny bank holiday weekend with family, enjoying the relaxing of lockdown rules, and a good start to the short week at work, I woke up last Thursday morning utterly miserable. Crying for no reason. There was no bad news. No fear for what lay ahead that day and certainly no melting trains or being abandoned that started all this. In fact, I had received good news the day before – an exciting new opportunity for my advocacy work.

I woke up, spun my pain-free legs out of bed, put my head in my hands and started to cry.

By the time I dragged myself to the shower and realised I had that all too familiar empty feeling, the ‘dark flatness’ I sometimes refer to it as, where literally nothing excites you, I knew I was dealing with depression again. You could win a holiday that very morning, get a call from the boss demanding you stay home and play computer games all day until 5pm – whatever would be your idea of winning the ‘fun lottery’ – it wouldn’t be appealing. So you simply sit, stare and feel nothing in the bath of lukewarm melancholy numbness you find yourself in.

Why does it happen?

So why did I wake up depressed? With no external factors, trauma, stress or fears, sometimes it can be as simple as changes on a biological level. However, I know I am not addressing the real reason in my personal situation.

I have suffered from depression severely only twice in my life – during major flares as a teenager and again in my mid-20s, and between 2019-2020 when I started to write on this website, According to the Rethink Mental Illness organisation, lifestyle factors can lead to a higher risk of depression, specifically:

Some studies have shown that not exercising, being under or overweight and having fewer social relationships can increase the risk of experiencing depressive symptoms.

What are the signs and symptoms of depression? (rethink.org)

My personal experience

After years of planning around my health, I became a dad in January 2019. The same month, people like me with autoimmune conditions in England were informed that we were being switched from Biologics treatments to ‘Biosimilars’ as part of an NHS cost-saving move.

We were given little notice – just two weeks between a consent form thrust under my nose at a routine appointment and the change itself. However, the information we were provided clearly stated that we could switch straight back should there be any adverse effects.

At the time, I was a shining example of what biologics could do for the quality of life for people like me. I was in a wheelchair as a child – the prospect of biologic therapies not only gave me hope through my childhood, but when a flare became out of control in my 20’s, and I finally gained access to them, they changed my life.

Within two weeks, I was pain-free. Within four weeks, all of my psoriasis rashes had vanished! It was incredible. I promised my doctors that I would make the most of the opportunity, and I did. Within a year, I had dropped 25kgs in weight, played competitive sport, and ran half marathons.

Within a month of the switch, I was in agony. Then the rashes returned. Despite the promises of switching back, it took me 11 months of fighting and crying in doctors rooms to get back to my original treatment. But by then, it was too late. My first year of parenthood had been tarnished—harrowing experiences like not being able to carry my son. Worse still, two years on, I remain in chronic pain despite my arthritis being back under control. The pain pathways created in my brain seemingly left stuck in the ‘ON’ position long after the flare has since subsided.

Falling. Still falling.

I fell from one of the highest points in my life I could have fallen from. Fit, active, doing things I only dreamed of as that kid in a wheelchair – not to mention becoming a dad, a beautiful family, a new modern house and a job that I loved. I lost everything in that time, My mobility, my confidence, friends – so many friends, and to make matters worse, I was left in permanent pain, even today, two and a half years after that fateful switch.

Hours of CBT and other talking therapies have established that this is the likely cause – even if some days I try to explain ‘I have no reason to be sad’ myself. But, I know, deep down, there is still a lot of pain and resentment lingering amongst the cracks and scars of that event and the experiences from it.

Why are you sad?

So now you have the “Why are you sad?” – although I still can’t tell you definitively or the when. There are obvious triggers, such as bad news, stress etc. but last week came completely out of the blue. If I had to pick something to put my money on, I would say seeing old friends getting out and about in the sun over the last week probably contributed. Whilst the world has been in lockdown, I’ve felt somewhat on a more even playing field. As things open up again, I am reminded of what I used to do – with whom I used to do it, and after a year, that hurts.

You’ve got so much to be happy about

Yes, I have. I know I’m a lucky guy, but it doesn’t make an ounce of difference. If I had a million pounds in my bank account right now (I don’t, by the way, Mr Taxman!), yes, it would perhaps limit the impact a stress trigger could have before it became a trigger. Still, it doesn’t prevent or cure mental illness – and depression IS clinically recognised as a mental illness.

So frankly, this statement is about as ignorant and stupid as they come, bar the final one.

Cheer up!

Telling me to cheer up is like me demanding you grow an extra four inches by saying, ‘don’t be short, mate’. It’s f*cking ridiculous! Yet, in the UK, anyway, it would appear to be many’s default response to any sign of low mood, particularly amongst men.

I remember the first time I knowingly considered how absurd that comment is was when I sat in a hockey club changing room upset over a failed relationship when a friend put their arm around me and said those dumb two words – I can’t even bring myself to type them anymore, it tastes bitter in my mouth without me even saying anything – as if that would heal a broken heart in an instant. But, of course, we don’t say it to grieving people who lost loved ones, so why is it acceptable to say it to someone with a mental illness or after terrible news like I had that day in the changing rooms? It’s pre-historic.

I can’t ‘cheer up’ or ‘snap out of it’, I can’t tell you how long it’s going to last, and I can’t tell you why I have very little interest in anything at the moment – but I can try and explain how I’m feeling, how my head is like a warzone of noise and negative thoughts – if you’re prepared to sit and listen without judgement.

Because, until you have been in this position (and I sincerely hope you never will), of living with a feeling of hopelessness like there is a plug that’s been opened in the soles of your feet and any joy, meaning, and self-worth has been slowly sucked out of you, where all you can think about is how useless you are and how you let everyone around you down – then you simply cannot understand my pain.

Useful Links

Below are some initial suggestions from RETHINK for providing practical day to day support to someone with depression.

  • Offer them emotional support by being a good listener, reminding them that treatment is available and reassuring them. Remember that depression is an illness and people cannot “snap out of it”.
  • Encourage them to get some exercise and eat healthily. You could invite them out on walks, or help them do things they used to enjoy.
  • Keep a note of changes in their medication, or their condition. This can help the person you care for in appointments.
  • Help them to stay away from alcohol and other unhealthy things.
  • Take them seriously if they are feeling very unwell and are thinking about hurting themselves.
  • Encourage them to get professional help.

You could also try and find out about self-help or support groups in their area. Your local IAPT service may be a good place to start.

Think about what you can do if you are worried about someone’s mental state or risk of self-harm. It will help to keep details of their mental health team and discuss a crisis plan with them.

https://www.rethink.org/

https://www.samaritans.org/

Get help from a mental health charity – NHS (www.nhs.uk)

Media work, Interviews and everything in between

I’ll start this post with an apology. It’s been weeks since I’ve given an update here, although I have been slightly more active on social media.

I have recorded podcasts queued up, articles waiting to be written and people waiting for me to get back to them for their campaigns. So although I may have appeared absent, the radio silence has been more due to how hectic everything has become.

Over the last month or so, I have been involved in some exciting initiatives and campaigns. So rather than try and list them all, I have provided some highlights below.

Versus Arthritis #ThePainfulTruth Campaign

One of the more visible events I have been involved in this last month has been Versus Arthritis’ The Painful Truth campaign. Working with the charity, I shared my story, and I had a few interviews with local papers, resulting in a full-page spread in the Eastern Daily Times (which can be read along with videos here), a front-page feature in another local paper and some videos of the interview shared online.

Although many phone calls and hours of preparation went into the event, it was disappointing that none of that exposure or story was shared by the charity itself. It was great to make the most of the opportunities to raise awareness that I was given; however, and received a lot of positive feedback from the interviews I gave.

Other Events

I had the pleasure of taking part in an arthritis awareness poetry reading event hosted by some good friends of mine over in the US. It was amazing to read some of my work aloud for the first time but meet some incredible people sharing their raw experiences too. There were many tears on the call, and I connected with some very inspirational people that I hope will help my awareness work in time. A recording of this event will be available to view shortly on Effie’s website, Rising Above rheumatoid arthritis (risingabovera.com).

I was also delighted to be asked to be a guest on the wonderfully hard-working Cheryl’s podcast over at ‘Arthritis Life’ – where we spoke about diagnosis journeys, pain management and living with arthritis. You can find ‘Ep.34 – The Worst Good News: What to do When Test Results are Normal but you Feel Awful?’ on all major podcast platforms, including iTunes and Spotify or listen directly on Cheryl’s website here: Joel Nelson’s Journey | Arthritis Life

Big News

I also have some exciting news to announce – some imminently (lookout for another post shortly or head over to my Facebook Page) and some over the coming weeks – all of which should take my awareness work onto a bigger stage, hopefully reaching more people than ever. So although right now, I am struggling to fit this growing project in amongst work and family life, I am still forging ahead. I can’t seem to stop myself. So bare with me whilst things such as the podcast schedule suffers whilst I find a balance and prioritise efforts.

Downtime

Finally, I was also fortunate enough to squeeze in some downtime, with a couple of weeks away from the day job amongst all this. And although the British weather typically let us down and it rained throughout, we managed to have some great family days outside, with the relaxing of lockdown rules here in England. I was also able to walk an incredible average of 7 miles a day over those two weeks – which has left me in a far healthier place than what I started.

So I thought I’d share some photos of our adventures.

Chronic pain and mental health – a toxic combination

If all good stories should have a beginning, middle and end, then I suppose a bad one simply has a start and a stop. This story does, anyway, and it is an unfortunate story at that.

In this article, I talk about the ‘one-two’ of chronic illness. The double jab. The all too familiar story of how a physical issue, such as high pain, causes an initial problem, the start, but quickly becomes a far greater danger – the slippery slope; no, the jagged, staircase of depression, anxiety, self-deprecation and deteriorating mental health.

Get comfortable; you’re coming on this rough ride with me.

It seems appropriate here to add a trigger warning. If you can relate to this experience, then please look after yourself. You can find crisis lines for support on the Resources page. This piece is to let you know you are not alone or in any way abnormal in this experience. Those reading this that have not experienced how physical health, particularly pain, can trigger mental turmoil, then I sincerely hope it helps your perception of those in this situation and allows you to empathise with their circumstance.

A firestorm in Eden

I sit in my garden writing this on a beautiful spring day in late March. At an unexpected 21c, the sun is toasting skin in dire need of natural vitamin D off the back of what feels like an extended winter due to the mental drain of pandemic-enforced lockdown. The birds are frolicking; my dog is laying belly-up on the grass, and families reunite, enjoying the perfect timing of the relaxing of lockdown rules coinciding with unseasonably warm weather. As if things couldn’t possibly look more positive, I have my second Covid vaccine this afternoon, just over a year after I was placed under the unprecedented Shielding rules here in the UK.

Yet, despite the near-perfect surroundings in which I sit, my head is a firestorm. The simplest of thoughts, questions or tasks ignite into an irrational panic, a rush of fear, self-doubt and destruction that only fuel this storm that has been raging for a week now. And what’s worse, it came from a place of happiness and accomplishment. Like so many of us living with chronic and changeable illness, I was climbing my way back up and feeling strong at the time of the fall.

The fine line between ambition and delusion

Off the back of a successful 9-week intense pain management therapy course, I was feeling great. I was back at work, starting to put my spin back on things. I had significantly reduced the number of painkillers I was taking and had more tools and techniques at my disposal to cope with this long term pain issue than I have ever had before. My head felt clearer, and I had reserves of energy once again for more than just the most basic of daily tasks and for the first time in two or three years, I felt motivated. I even dare go so far as to say that the weight I had been carrying these last two years or so had started to lift—the weight of feeling like a burden to everyone around me. Day by day, I was carrying my head ever so slightly higher.

I’ve known for a long time that my mental state was holding me back, or so I thought. I found myself using my pain as an excuse where I would see it more as a challenge to overcome a few years back. In this healthier place and with new pain management techniques in my toolkit, I was determined to get back to that stubborn version of me. The one who ran the Great North Run with two cracked ribs and a swollen ankle in under two hours. The Joel who cycled RideLondon 100, even if it did take me 7 hours – ‘it was 100 miles most regular people wouldn’t have the mental stamina to take on, even without arthritis’, I used to tell myself. When I was in that place of sticking two fingers up at the world and my disease, I knew that I could achieve far more than most. I had the mental strength to do it; now I need my body to catch up.

So with this in mind, for the first time in five or six months, I thought I’d try to go for a run again.

The pain and the realisation

The run felt incredible. I hoped to run a mile. A short ten-minute leg stretcher to dust off the cobwebs and see where I was at, and in hindsight, it’s what I should have done. But, to my surprise, the heart and lungs seem to have retained some level of fitness despite my months of being sedentary. The excitement and adrenaline took over. The box of enforced restrictions that my body had put me in over recent times seemed to be falling, wall by wall, and so I kept running. I felt amazing. Apart from the negative thoughts about how much more of a belly I was bouncing around with me since the last time I did this activity, it was pure euphoria. And so, I kept running, and before I knew it, I had been running for almost half an hour. Once that abruptly registered, I turned for home.

Hours of talking about ‘pacing’ in my pain management sessions had taught me about increasing my activity a little bit at a time and to avoid that all too familiar trap that many of us with a chronic illness that features cycles of flares and remission fall into – the ‘boom and bust‘ or ‘making hay whilst the sun shines’. We feel compelled to do what we can when we can, as we know darker days are just around the corner, but in doing so, we swing violently from one extreme to another with our condition(s). There is no management of our health going on here, just periods of intense activity, often in spite of the pain, followed by periods of enforced rest and recovery. Over time, this subconsciously leads to avoidance and less activity as we associate those bad experiences of pain with activity – conveniently forgetting that our actions caused it.

I knew all of this. I’ve had it drilled into me for the last year, but in that one moment of achievement, of getting a little taste of my old life, like a relapsing addict, I lost control. I took a short term fix without any consideration for the long term consequences. And my word was there consequences.

The staircase of mental anguish

What happened next is captured pretty well in the poem I wrote shortly afterwards:

I tried to run, and I tried to be free.
Get back to someone that was like the old me.

I was determined. I excelled.
Felt like I could take on the world, to break from this hell.

But three days have passed, and I’m ready to tap out.
Shocks down my spine, sciatica so bad, I could shout.

I’m clawing at walls, a distraction from the pain.
Not sure if I have it within me to work through this again.

‘Practice makes perfect’ and ‘you get what you deserve’,
Doesn’t seem applicable for the little my hard work has earned.

I tried to do something. I wanted to be free.
But now I’m just a bloodshot and broken, deflated version of me.

I tried to be free – Joel Nelson

Within a couple of days of the run, I was in agony. It was nobody’s fault but my own. No excuses, no magic pill – one of the things pain management has taught me. I mismanaged my condition. But the firestorm I referred to at the start of this piece isn’t because of the pain. Sure, my defences were weakened by it – its jarring and jabbing causing me to lose a line or two of mental resilience I would certainly have had without the pain, but it didn’t put me down this jagged staircase of depression. The setback did.

People who have not been in this place will never truly understand it. Still, a setback with one’s long term health condition can feel like a series of blows, many far from physical, and before you know it, you are lying at the bottom of the staircase of mental anguish after banging your head against every single step on the way down. Let me explain…

It starts with pain

It starts with the setback, in my case, the pain. What this meant for me was calling in sick to work – just weeks after I had got myself back to full-time hours and starting to feel at home again. Many of us that have to juggle long term health issues have built up some fairly unhealthy attitudes towards being off sick over the years. Unfortunately, many of us have also lost or been forced out of jobs we loved because of our health challenges. Show me somebody with a chronic illness with cycles of debilitating flares and periods of normality in remission that doesn’t feel guilty, the need to add value, go above and beyond and work at 110% when in work because we are so very conscious of the time off we will inevitably need throughout our careers, and I’ll be amazed.

A case in point was when I broke my ankle on a Saturday afternoon playing rugby, only to be at work at 8am on Monday whilst still waiting for the next steps on any potential surgery. I did it because I knew there would be times like today where it’s impossible to be productive in my normal duties.

My Instagram Reel on the subject

It ends with a fall

So, after a couple of days, as the pain starts to subside, making room for us to think about other things, darker things, worry, guilt, and fear starts to set in. I call this the second phase of my work absence – or in the context of this article, the end.

On the first step on this staircase, I merely stumble. I lose my confidence and start to doubt myself – everything from my ability to cope and provide for my family to even the reality of my setback itself and if I am ‘too weak’ and simply need to give myself a talking to. A quick attempt at a routine task reminds me that I am being irrational with the latter as the pain ramps up.

Next, is self-deprecation and this particular step is unpleasant. I find myself using terms like ‘sorry, I know I sound pathetic’ or ‘what an idiot’ when I try to explain how I feel or make mistakes. In fact, I am often first alerted to this when my wife says something like ‘don’t talk about yourself like that’. In this phase, I start doubting everything I do. ‘I am awful at my job’, when I return, ‘I’m going to be a million miles behind everyone else’, ‘I’ll never get an opportunity, ‘things will be taken away from me’, ‘I’m sh*t at playing the guitar’, ‘why do I bother writing – I’m so useless at it’ etc. etc. etc. I stop replying to even the kindest and most heartfelt social media messages of support. I can’t believe anything good anyone has to say at this moment.

The word ‘useless’ seems to be used every time I open my useless mouth in my useless head. It’s brutal and just as damaging to my mental state, but at the time, I am blind to it and to make matters worse, I continue to set the bar higher for myself as my condition gets worse, creating an impossible goal in which to achieve, and therefore fuelling these processes.

Finally comes the fear. By this point, sleep has gone out of the window, leaving even more time in which my tired mind can wander the streets of the irrational and the absurd. I’m worrying about losing my job, my wife leaving me, being an awful daddy to Dylan, and letting everyone down but not letting anyone in. I close up. I withdraw. My light goes out – any traces of confidence has gone, I am the shadow at the bottom of the stairs.

I warned you it was a bad story.

I have too many passengers on my bus, they shout, I cannot cope.
I write down these words to control them as they pick, they tug, they grope.

What we started, you and I, could never be controlled.
The pain and the depression, together, more than anyone can withhold.

An excerpt of ‘What we started’ – written by Joel Nelson during this latest period of mental health challenges

Epilogue

What starts with a few days of very intense pain and a little bit of panic around how I will cope ends with a dangerous mental health problem. Turning a two or three-day work absence into a week, and sometimes, much more. And it’s the worst thing to try and explain to your employer – especially when you are saying the pain is now manageable, but you are still far from being fit for work.

It’s not simply pain and depression; it’s a reminder of what you can no longer do, a neon sign that flashes in front of your eyes that parades what you could have had in another life. In my case, the real sickener was just how good my heart, lungs and leg muscles felt – it’s like I am a Formula One car with no brakes. I can still fly when I want to and run with the best of them, but I will crash, and it will be horrific, and my family, friends, career and financial stability will all suffer.

Finally, I often get asked what gets me out of that darkness. What gets me out of that pit. And the answer, embarrassingly, is I don’t really know. I mean, I know all of the tools I have accumulated over the years from CBT, Disability Adjustment Training, and now Pain Management contribute significantly, and I do fear as to what happens should I not quickly get out of that place but I cannot give you some secret recipe. Therefore, the greatest effort must go into prevention. Making it more acceptable and accessible to get help, talk about these things, and be honest.

More needs to be done to educate society on how chronic pain and chronic illness is far more than what they can physically see. It may be a glorious day for post-lockdown Britain, but there’s a firestorm raging within me.

If you need to talk to somebody or were affected in any way after reading this article and live in the UK, please call Samaritans now on 116 123. It’s free and open 24hrs a day, 365 days a year.

You can also contact your GP or local Wellbeing Service or visit this page for more info on free counselling services: https://www.nhs.uk/conditions/stress-anxiety-depression/free-therapy-or-counselling

Juvenile arthritis and me

At times, the most life-changing moments pass you by without a second thought at the point of circumstance. So, in fact, at the time, they are not life-changing at all, not like the tremendous jolt of a traffic accident or death of a loved one. For many, these defining moments of one’s life are not recognised as such until many years later. It is a gradual, slow burn towards the inevitable impact that you don’t see until it’s too late.

My life-changing moment came when I was ten years old. When I first experienced that now unforgettable discomfort of your body attacking itself without good reason. Without incident. I first experienced arthritis as a child, but I didn’t recognise it’s impact until I became a father myself, some 25 years later. By this point, I had accumulated a lifetime of scars in a young person’s body.

These are some of my deliberations of juvenile arthritis and me, at the time I was a child myself.

Kids that didn’t quite know their place in the world

Chronic illness feels unfair by its very nature. We have a social construct implanted into us at a young age that leads us to believe that when something hurts, we go to a doctor, we are diagnosed and prescribed some form of treatment to make it better. So when you are given a label of being chronically ill, incurable, something that can only be managed and not resolved – no surgery or bottle of pills can take that problem away for you. ‘There is no magic bullet‘, as a clinician once said to me.

Chronic illness in children feels particularly cruel.

Protecting your children’s innocence feels like one of the most significant unwritten rules you inherit as a parent. As a toddler’s parent, I feel like I curate my son’s experiences, holding on to a high level of control of what I expose him to and what I protect him from. It’s a terror as much as a privilege. Although years from it, I already break out in cold sweats over thoughts of the first time he tells me he is being bullied at school, his first pet dies, or a girl rejects him. I can only guess, therefore, what it might feel like as a parent to find out that your child has a long term health condition. Something that can only be managed rather than cured. I can, however, now appreciate the pressure my health put on my parents all those years ago.

A home from home

Hospital stays dominate my childhood memories. Weeks spent on the same children’s ward in an old Victorian building. Rooms with windows so big, it felt almost by design – an incentive to get better and back out into that big world we could all see we were missing out on. I spent so long in that wing that I had my ‘usual’ bed, complete with mattress topper, my favourite things ready from the games room when I arrived (a cd player and games console). My favourite two or three nurses would come and sit with me for long talks at night whilst the younger children slept, all on first names terms, for goodness sake! It felt like a second home.

I was always in the first bay of three, each bay consisting of six beds. Sometimes I was in bed number one. I remember a brief stint in bed number three, but I always returned to bed number five as soon as it was freed up by some lucky soul who had only broken a leg or had their appendix removed. It sounds cruel now, but as a grumpy 11-14-year-old, angry at the world, I was always very envious of the ‘one-night stopovers’.

Bed number five was the cruellest bed. It faced the exit. So not only did you have the crushing disappointment of seeing the parents of other children arrive each time the buzzer went, but you had the desperately excruciating view of watching your parents leave. That short walk, of ten metres or so, hurt far more than any test or pain the condition caused me. To this day, it’s still the upsetting memory my mind conjures up every time my son cries when I leave him at nursery or go to work.

I was in and out of that ward so much that I even made friends with the ‘regulars’. I became pen pals with kids dealing with other chronic illnesses or disabilities, and if you were admitted for a couple of weeks for ‘tests and treatments’, it was unusual not to see one or two from this gang of kids that didn’t quite know their place in the world.

This photo – one of the few that I have around the time of these experiences, was actually sent to me by one of these pen pals. I had sent it to her with a letter, and she still has it to this day.

The punch that leaves you staggering for a lifetime

My experiences weren’t pleasant – far from it. There were the ‘treatments’ – the joint injections, trials of drugs that either damaged my liver, ate away at my stomach lining or brought me out in allergic reactions, hydrotherapy as a 13-year-old with pensioners, painful daily physio and being placed in traction where doctors hung incredible weights from my legs until I screamed so much that the other kids couldn’t sleep.

Then there were the psychologically damaging events – many closely linked to the treatment, as you can assume already, but the more subtle experiences that, like the life-changing moment, you don’t realise just how damaging they are until you are far older. These are the memories of being asked, ‘why are you here?’ in the rheumatology waiting room by people sometimes 60 years your senior. The being told what your family and siblings got up to at the weekend whilst you sat in a hospital bed. Missing an entire year of school, only to return to see that your ‘best friends’ have replaced you. The not being picked for things in case ‘you overdo it’ like people know what’s best for you. Falling over in the playground and watching people encircle you, laughing as you struggle to get back to your feet. The doctors asking your parents something as if you are not laying there whilst they poke and prod – like you are somehow not qualified to answer or, worse, a hint in their voice that you might not tell them the truth. ‘Is he worse in the mornings?‘, ‘does the limp ease with exercise?’, ‘does he limp when he thinks you’re not looking?‘ – I’m here! I’m literally laying right f***ing here.

Do you want to know why so many of us chronic illness types grow up to be adults that don’t know how to pace? Why do we feel this burning need to offer value, contribute and overdo it when we are well to try and make up for the times we are not? These experiences are why. Because I promise you, at some point, every single one of us has been made to feel like a fraud. Doubt our experiences. Prove our experiences. Somehow quantify our discomfort – and when those experiences are as a child, it stays with you for life. Ingrained into everything you do. Every decision you make. Every effort you make with and for others.

It’s life-changing, but when it happens, you have no idea of the significance that moment had. The weight the punch carried. The punch that leaves you staggering for a lifetime.

A life of uphill walks

Living with arthritis as a child, you learn to be old before your time, which is ironic for an illness often misunderstood as being an ‘old person’s disease’. You learn to live in discomfort, self-manage, be independent, advocate for oneself and pretty quickly, that illusion we create for our children of boundless happiness and infinite possibilities is shattered prematurely. We can no longer curate the experiences of children when they have arthritis. We are no longer in control – from dream makers to the people who have to leave the ward to care for siblings or go to work to pay the bills.

Arthritis changes lives. And as much as I was forged in the fires of those experiences – it made me confident, not afraid to speak up, challenge, fight, lead – it also took far more away from me than it ever gave. Arthritis changes lives but not just the child that suffers from it; the parents, grandparents, siblings and those best friends, too.

So, as much as I want to end with a message of hope or say that everything will be ok, it wouldn’t be a faithful account of the reality of a man who’s spent over 25 of his 36 years on this Earth uncomfortable. I’m afraid you won’t find me using current popular taglines of ‘my arthritis doesn’t define me’ or that I ‘thrive with arthritis’ because it does define me. My arthritis has stopped me from doing incalculable things. It’s kept me up nights on end. It’s opened doors to places of pain I wish I never knew. It’s most troublesome of all that it’s pushed me to the absolute breaking point of my mental health’s capacity to cope.

I don’t thrive or flourish with arthritis because I could be so much more without it, and to dismiss its impact would be doing a disservice to myself, those that have suffered at the hands of my condition and everyone else in my position struggling with the pain, the fatigue and the challenge of it all—the life of uphill walks.

You say what you need to tell yourself to get through the day, but I am honest with myself. Perhaps too brutally, at times. But my juvenile arthritis is me, and I am juvenile arthritis, and I will never walk alone. And whatever I do, whatever I achieve, whatever I fail at – I do it with arthritis by my side – a life-changing moment that hangs forever in my shadow.

Postscript

I like to offer hope. Support others. It’s what I do. However, this piece written specifically for World Young Rheumatic Diseases Day was designed to raise awareness. Sometimes we have to give hard-hitting accounts to start conversations. To wake people up to the realities of our lives.

If this piece upset you, I apologise – drop me an email, and I will signpost you to support. However, I cannot apologise for telling the truth, as telling my story, warts and all, is the only way to get people’s attention. To make a change. There will be many days when I tell stories of heroes, celebrate arthritis warriors overcoming their challenges, but today it’s about how arthritis as a child shaped and scarred me.

Thank you for your understanding.
Joel.

‘No established cause’ doesn’t mean no problem

I am heartbroken.

For over seven years, I have reported neurological issues. Last year, I finally got hope that we would get to the bottom of this miserable set of challenges when my rheumatology team pronounced me active disease-free regarding my arthritis, clearing the way for neurology to examine me in isolation finally without anyone palming my complaints off as ‘just my arthritis‘ or diagnosed chronic illness.


For background, read this previous post…

A year of pain, falls and more

Last year, probably in part due to the pandemic and shielding stresses, one of these ‘episodes’ as I’ve come to call them returned, with a bang. With the great news from my rheumatology team, a unique opportunity presented, so I pushed – harder than I have ever pushed for answers in my life. I got through some pretty long and dark days with this hope – hope that I would finally know why my hands and feet randomly went numb or felt like they were in scolding water, why I would get hit with waves of fatigue that would floor me, cause me to fall down the stairs and walk into door frames. Why I embarrassingly had toilet accidents that I never felt coming or answers to why I had to pull over at sides of fields in the middle of nowhere with my crying son as I was suddenly not safe to drive.

So when I got reassigned to neurology (for the third time), I thought this would finally be it. I was slightly disappointed when the neurologist said I didn’t have a separate ‘neurology’ file and that everything was bundled into one – and I mean bundled. I always know when I am next in line to see the consultant as few rival my pile of notes on the metal clinical tray outside the doctor’s door, resembling something as big as a pile of Sunday newspapers and just as frayed and tatty as the previous week’s unsold ones, held together by string these days given there aren’t elastic bands large enough.

Nobody’s joining the dots

The neurologist knew little of my previous concerns, raised over the best part of a decade as these episodes came and went. I found myself deflated as I tried to condense years of experiences into the few minutes of precious time I had with this man—this stranger for who so much depended on. The deflation was exacerbated as he clearly picked and chose what he was interested in – for example, the life-altering stuff that most impacted my daily living, such as the fatigue and falls, barely registered. In contrast, the numbness and pins and needles clearly pricking his ears for the few moments he would spin from his default position of back to me taking notes to actually making brief eye contact and listening without multitasking on what I was saying.

The repetition, the cramming in of information, pointing out ‘I’ve already had that test‘ numerous times and carefully choosing what to and what not to say for fear that I would lose his interest or sound simply crazy from the depth of symptoms and experiences, was exhausting. However, hope was restored when he said he would create a separate ‘neurology file’, go through all my notes, and press on with a brain MRI after another nerve conduction study. At this point, he made no secret about his theory – Multiple Sclerosis (MS) or possibly biologics-induced MS. I was shocked. He said it so casually. I had no idea that my arthritis treatment could even do that. He also seemed so sure. Sure enough to mention it without any tests, anyway. I left after what seemed like a whirlwind few minutes, confused.

Back on the scrapheap

Fast forward a couple of months, and, as expected, the nerve conduction study test came back clear, just as my last one had several years before, indicating that the issue was central rather than at the peripheral nerve level. Even the clinician conducting that test said beforehand, ‘with those symptoms, this will be clear, you really need that MRI‘. I had the brain MRI, which unusually was a test that I hadn’t had before after years of neck and spine MRI’s and even a brain CT scan after one of these episodes previously caused a migraine so severe they thought I might have had a stroke. I had the MRI, and I waited.

After a painfully long three weeks, in which I had managed to convince myself a full 360 degrees of possible outcomes – from ‘oh, I heard nothing in the first week, so it can’t be that bad‘ to ‘it’s been too long, it must be complicated‘ I received one of the most disheartening and infuriating letters I have ever received from a doctor:

MRI brain 7 February 2021 is reported normal. There is no radiological evidence of CNS demyelination.

Investigations have not established a cause for Mr Nelson’s symptoms. I have not arranged to review Mr Nelson but if he has new or progressive neurology, then please re-refer.

That was it.

So after a year of waiting since this new episode began, just one 10 minute consultation and two tests (one being a repeat), I am back on the scrapheap. To wait for my condition to worsen or for new symptoms to appear on top of numerous others. All because, in my opinion, a doctor had a theory and quite rightly tested for it; however, when that theory came back as false, the investigation stopped. Why?

What should have been a good news day (normal brain scan) was turned into a terribly negative experience. This has happened before, of course, in the two or three previous episodes of whatever this issue is; however, the difference back then was that the flare and symptoms passed – on this occasion, the problem is just as impacting to my life as it was a year ago and, unlike the previous episode around 4 years ago, I am a parent now. These issues don’t just pose a risk to me. In summary, it felt like a frigid way to deal with another human being. Like breaking up with a teenage lover with the words ‘it’s not you, it’s me‘ – it tells me nothing whilst also having the power to shatter my world. Destroy my hope.

Where does this end?

So what will it take for somebody to take a look into my situation again? Speaking with my GP yesterday, it’s clear that neurology is now a dead end. He suspects it’s more autoimmune/rheumatic in nature anyway, that or some form of Complex Regional Pain Syndrome (CRPS), although I’ve never heard of that, personally. So, after all this time, it appears I am back knocking on rheumatology’s door again – which is ironic considering the last time I saw my rheumatologist in the summer of 2020, he mentioned that my condition, psoriatic-associated juvenile idiopathic arthritis (Pa-JiA), could continue to evolve until I reached my mid-40’s, right before telling me the issues I was reporting were neurological!

As I explained to my GP on the phone, ‘no established cause’ doesn’t mean no problem. Every day this issue impacts my life when active, far more so than the arthritis I have lived with since I was a child. Some days, I am scared to drive, have to set trackers on my phone when walking alone across fields, carry my son up the stairs on my backside when my foot is numb, take ridiculous levels of pain relief just to get to sleep some nights when the electric shock sensations in my fingertips are too much. So regardless of ‘established cause’, there is a clear and obvious problem, and I sit here today wondering what it will take for somebody to retake an interest and get to the bottom of this once and for all. A bad fall where I break something? A car crash? To be found facedown in the mud by another dog walker – worse?

Occasionally an invisible illness but a constant reminder of need

Note: This article was first published by Arthr on their website in October 2020. You can find it here.

An uninvited companion

Arthritis has a funny way of reminding you of its presence. Having lived with the disease in numerous evolving forms for approximately 25 of my 36 years of age, it’s never far from my mind.

It’s often referred to as an ‘invisible illness’, a term that fills me with frustration each time I have to write it due to negative experiences over the years. Although we can live in pain 24/7, battle fatigue, discomfort and challenges ranging from getting to sleep at night to getting ourselves dressed in the morning – there isn’t much about arthritis that’s invisible to me.

Arthritis is that unwanted guest at the party. The reflection in the shop window when you’re having a bad day. The cold at Christmas. It’s always there, even when the rest of the world cannot see it and like a painful game of whack-a-mole, just as one problem is resolved, another seems to present.

Still, except for psoriasis, it’s often the supports and aids that we use that the rest of the world sees, and accepts, over the more significant issue of pain and inflammation, disappointingly. As somebody that lives with arthritis every single day, however, it’s also a measure of my disease.

A measure of my disease

In conversations around my arthritis, I often refer back to when I was in a wheelchair as a child. It acts as a good wake up call for when people are not getting the impact the disease has on my daily life. It’s also a great mental image to snap people out of that initial loop they seem to get in as they try and wrap their heads around their false preconceptions of arthritis being an ‘old person’s disease’. Nothing like stories of laying in traction, knee injections, and hideous reactions to experimental drugs all before the age of 13 to shatter their unconscious bias!

But it’s also a gauge I use for myself when things are bad in terms of pain or limited movement. ‘At least I’m not back in a wheelchair’, I tell myself when I have to resort to crutches – ‘at least I’m not back on crutches’, when I first start using a walking stick again, and so on. It helps stop the spiral of panic and fear that comes with a flare or worsening of the condition if nothing else. After all, those of us who have lived through several periods of lengthy flares, no longer take the remission periods for granted. Who knows if that next flare will end?

An unhealthy relationship

Over the years, I have realised that I have an unhealthy relationship with mobility and daily living aids. On the one hand, I campaign for arthritis awareness, to break the stigma, to give the general public a glimpse of what living with a chronic illness is like. On the other, I have been uncomfortable with using supports and aids ever since I was a child – this makes me uncomfortable and leaves me feeling like a hypocrite.

Perhaps it was because of the age of arthritis onset, right before puberty. Later in life, almost certainly because I became a man who didn’t want to show weakness in competitive work and social circles; either way, it was wrong and worse, my health suffered because of it.

High school wasn’t fun for me. A combination of suddenly being in a wheelchair, falling off my crutches in the courtyard or having to swim with the girls whilst my male friends were playing football. Either way, it changed me. When I headed off to University a week after my 18th birthday, I reinvented myself. It was the last time I openly told anyone about my disease for over 15 years.

This approach might have made me feel less vulnerable, draw less attention, appear ‘normal’, but it was at the detriment of my health. I hid my wrist supports and braces, only putting them on at night. I skipped taking my Methotrexate on weekends that I knew I’d be drinking, leaving me in agony the next week. On one occasion, when an afternoon pint with some friends from my sports team turned into a full night out, I felt so sick from the mix of alcohol and the cocktail of anti-inflammatories and painkillers that I had to run back to my room to vomit. I sat and sobbed for half an hour or so before heading back to the bar, laughing off my absence by saying I bumped into a friend outside. I was very unwell for two days after that and I didn’t tell anyone. I just locked my door, turned the phone off and rode it out. Looking back, it was naive and stupidly dangerous. But I was young and trying to keep up appearances whilst managing a life-changing illness.

A time to change

In 2019, I had another considerable flare, and I was tired of making excuses. Excuses to another sports team about my absence, excuses to friends of a decade or more who couldn’t understand why I always cancelled, I was tired of struggling along when I knew there were things I could do to help myself. At my lowest point and just months after becoming a parent, I took a doctor’s advice to start writing things down. That soon became a blog, and it’s changed everything.

Within weeks, thanks to social media, most of my friends (and even some family who were still in the dark) knew the truth. I was terrified, but it was also a massive weight off my shoulders. Even the things I was frightened of, questions, judgement, isolation, never materialised. Instead, I opened the door to a whole new world – a community of people in the same position as me, many who were also hiding in the shadows. I didn’t just find my voice but a voice for others who were earlier on in that journey or didn’t have the monumental life-changing scenario I had of waking up one day with no idea how I was supposed to care for my baby on crutches. I hadn’t needed them for ten years, after all, so I had never planned for that scenario or knew where to go for help.



A year on, I use orthotics, wrist supports, a stick as needed, jar openers, heat patches, dictaphone, voice to text software; the list goes on. What is more, I do it openly and share my journey on Instagram and Facebook. I wouldn’t say it comes naturally to me as yet – I still break out in a cold sweat when I find out a work colleague or somebody I used to play rugby with has started following me, but I’m sticking with it.

More importantly, my health condition is now as well supported as when I was first diagnosed and before high school left its mark. Supports and aids allow me to stay in work and be a fully involved parent, and I would encourage you to do whatever you need to do to get by, to have a fair crack at life. You deserve it.

My constant need of support never changed. My attitude and self-awareness did. My arthritis only became invisible because, for a large part of my life, I let it. I won’t allow that to happen again.

My Covid19 vaccine experience

There were times over the last 10 months or so that felt like this day would never come.

My experience since March 2020 has been well documented. Since February, I’ve been in one shop with the only other times I have stepped foot in a building being to see a Dr, have a blood test or some other treatment – all with heightened levels of fear and anxiety.

Even when the successful vaccines started making the news, I didn’t allow myself to hope. Over the last year, I’ve only been left depressed and disappointed holding onto such positive thoughts. So when a work colleague contacted me over the weekend to say that our NHS Trust had decided to make the vaccine available to all staff, including corporate/non-clinical, the field in which I work, I was delighted.

The largest vaccination programme in British history

For background, the UK Government has pledged to vaccinate all adults in the UK by Autumn 2021; a target helped massively by the approval of the ‘in house’ developed Oxford/AstraZeneca vaccine. As part of their rollout, a priority group list was drawn up with people like myself and many others with chronic illnesses and autoimmune diseases requiring the treatment of immuno-suppression and steroids, falling into Priority Group 4, which began contacting people for vaccination from 18th January 2021.

Source: COVID-19 vaccination first phase priority groups – GOV.UK (www.gov.uk)

I was lucky to essentially fall into Priority Group 2 as an NHS employee.

A surreal experience

After speaking with my colleague, I checked my work email, and to my amazement, there were appointment slots to book for the same day at my local hospital! In a surreal haze, I grabbed a 20:50hrs appointment and dug out my NHS ID badge, which I haven’t seen in months due to the working from home arrangements in place.

Somewhere between being informed I was eligible, getting a same-day slot and reading the information on the hospital’s website for all the do’s and don’ts I needed to be aware of ahead of my visit, a shadow of doubt started to creep in. Around an hour later, I had completely convinced myself that I would be turned away, given the uncertainty, misinformation and outright conspiracy theories you would have no doubt seen circulating about the virus online – usually from sources of no credibility whatsoever.

I was particularly aware of there being a preference for the Pfizer vaccine for the immuno-suppressed; something around the Oxford vaccine being manufactured differently. I couldn’t even remember where I heard this – doesn’t matter in today’s world of fake news, it was a seed of doubt and it had started to take root.

I promised myself not to Google anything. I would answer any questions they had, be completely honest, and if I got the vaccine, great, if they turned me away, I was in no worse position than I started the day.

As the light faded and my appointment grew closer, I was a fidgety bag of nerves. I wanted this so badly. It felt so close.

Unexpectedly calm

I was overwhelmed by the organisation at the hospital. I’ve always been fascinated by systems and processes. Still, given the vast pressures that this place was under – experiencing a situation that it has never faced before – I was completely taken aback at how smoothly the whole operation ran.

First, clear signposting for the vaccination centre, a converted day procedure unit, complete with free parking and an obvious one-way system. Then, the biggest surprise, the quiet. I don’t know what I expected really, long queues? A ticket system? Military helicopters crisscrossing overhead, drowning out a tannoy system as you see in the movies? I jest, of course, but I certainly didn’t expect the silence, the lack of people, the lack of any sign of crisis. It made me feel proud to work for such an institution.

I made my way from the designated car park up a tunnelled corridor. The first person I saw was a security guard who greeted me. ‘Do you have an appointment?‘. Upon answering ‘Yes‘, I was given a form to complete using my own pen that I had been asked to bring with me. By now, two other people had joined me in completing the paperwork. Where is everyone? I again asked myself.

Upon completing the paperwork and showing my NHS ID badge, I was directed to a nurse who took my temperature. Then to another nurse who ushered me straight into the vaccination room. ‘Take a seat on one of these chairs and the next available station will call you up‘ I was told. There were approximately 6-8 ‘stations’, each with a doctor/pharmacist and a nurse, a trolley full of equipment and someone being vaccinated. Then there was me. No queue, no drama, just a gentle buzz of conversation, bright lights and eyes smiling in place of masked mouths.

Within a minute, I was called to station and asked to remove my coat.



Emotionally overwhelmed

The doctor introduced herself and started going through the questions on the sheet of paper I handed to her, starting with asking me to confirm my name and birth date. At this point, I realised I hadn’t even read what was on this double-sided piece of paper; it happened so fast. In my haze, I had filled in the boxes I was instructed to and moved on.

Some questions were asked about allergies, so I mentioned my one of cashew nuts, then if I was on any blood thinners or had any infections recently. I was then told I would be getting the Pfizer vaccine. At this point, there had been no mention of my medical background, my history, my medications. Perhaps it was looked at in advance but to be safe; I mentioned that I was on biologics by casually saying ‘I’m glad it’s the Pfizer one, someone said to be careful on Biologics with the Oxford one.’. ‘I’m not aware of that‘ she sternly replied and then asked me for specifics and what Biologic I was on.

‘No evidence’ of a preferred vaccine for the immunosuppressed

By the end of the conversation, I was completely reassured that the information I had was unfounded and their only concern with the immunosuppressed at the moment is the efficacy of the vaccine, as there simply hadn’t been enough people in my position vaccinated long enough to see if we get the same level of protection as the general public. With that dealt with, we moved onto the vaccine, much to my delight.

I offered my non-dominant left arm and was warned about side effects compared to the usual annual flu jab. I was told that there have been a number of reports that the injected arm aches more than usual, headaches afterwards are common and generally feeling a little under the weather for a couple of days. I acknowledged and was promptly vaccinated!

The first thing I noticed was the instant arm ache, as opposed to the flu jab, which tends to present hours later. Within seconds, this tracked up my left-hand side into my neck, and I had an uncomfortable (but bearable), neck and shoulder pain similar to a pulled muscle – all whilst the doctor was still holding a pad over my injection site. I didn’t feel the need to mention it, but it was unpleasant, so worth mentioning in this piece to allay anyone else’s fears, should they have a similar experience.

A few seconds later, I was given the important guidance of how I am not fully protected until 7-10 days after my second jab and need to practice social distancing etc. still and was directed to a waiting area where we were asked to stay for 15 minutes should anyone have an allergic reaction and suchlike.

Due to my excitement, 15 minutes went by in a flash, and I thanked the security guard as I walked proudly into the crisp night air, carrying the weight of my gratitude to be one of the lucky few to have some level of protection against this awful virus. As I drove away from the hospital, my eyes welled with tears – finally, a small glimmer of hope had been turned back on in my world.

Upon reflection

Apart from a headache later that evening, that was it. No issues, no other side effects apart from a dull ache in the muscle the day after. I could have easily taken paracetamol to help the headache that evening, but I wanted to experience the vaccination unfiltered to benefit this article. I even have my second vaccine booked in for the end of March – that’s something the media are not talking about.

From today, I have hope again. From today, I can see a future. A future of beers with friends, holding birthday parties for my son, going on holiday, watching live music and days spent at the beach. I also see a future of paying respects at funerals of lost loved ones, having physical contact for friends and family support through the tough times and the inevitable economic downturn that is to come.

As you see, this colossus effort to vaccinate an entire country in a few months, a national effort not seen since World War 2, means absolutely nothing if we do not learn. The next pandemic-potential virus is probably already circulating, perhaps in an animal or already in the human population. This vaccine won’t protect you – we will have to go through all this again if we do not learn.

The signs have been there for years – it took getting Swine Flu in 2008 and being horrifically ill where no doctor would come to the house for me to see the potential of a pandemic personally. But not enough people were impacted, so everyone turned a blind eye.

Worryingly, as I sit here typing this on the 18th January 2021, where 94 MILLION people have been infected worldwide (that we know of) and 90,000 confirmed deaths in the UK alone, I fear we still haven’t had enough people see the reality of this horrible situation with their own eyes to learn, to change; like those in the NHS or who have lost loved ones have suffered through, and it will be at the detriment of us all when this happens again – and it will happen again.

My first dictated article

So here it is. My first dictated article. I knew this day would come. I also knew that come this day I wouldn’t be ready to accept it. So with a big chunk of frustration and a dash of interpretation, I ‘speak’ my first article.

Just like any other day

Today started just like any other day. I woke up; I had a scolding salt bath. I walked the dog. Everything was normal. Then I sat down at my desk in my home office, grabbed the mouse and logged in. Within minutes I had pins and needles in my forearm, seconds later, my right hand started going numb, within 10 minutes I’d lost around 70% of the feeling in my right arm and hand.

Now to most people, this would be a shocking experience, but as somebody who has spent the last five years with what I can only describe as flares causing numbness, burning, pain and weakness in my arms and legs, it doesn’t bother me as much as it used to.

What I cannot get used to, however, is the feeling of frustration. The feeling of being hamstrung, running sub-optimal, knowing what I can achieve under normal circumstances. It’s a feeling that weirdly makes me feel as guilty as it does justified given the circumstances. I should feel grateful that I can do as much as I can, but nothing can compare to that feeling of grief that you feel when your independence or mobility is taken away, regardless of how temporary.

The challenges

I started working in IT from a young age; it was suggested by my rheumatologists to my parents as a future career path given my outlook. Over time, my career went from the technical to the managerial, and I’ve spent the last 15 years managing technical teams.

People management is tiring and unpredictable, but you find ways to juggle the demands on your time. The constant questions, challenges and conflicts. It’s easy to forget amongst all that, you also have your own work product to produce: reports, training plans, emails – so many emails.

Over time, you set a standard, an expectation. So when you log on to work with a stacked diary and 60+ unread emails on a Monday morning without the use of your dominant hand, all plans are ruined. But this isn’t something you can explain. Nobody would understand if you tried. Most days, at some point, my left foot feels like it’s submerged in a boiling bucket of water – imagine casually dropping into the conversation!

There’s no time in the modern world. There is no time in people management, so many of my frustrations and fears over using assistive technologies come purely from pressures on my time. In a world where people send you a chasing email the same morning that they sent the original, when is there time to train my voice to the software, to build confidence, to do things at half the speed of what others would usually expect from me?

Finding my voice?

I love to type, especially when I’m writing creatively. There’s something about striking the keys at pace, the hypnotic tapping, the flow. I’ve had the ability to dictate my words by Dragon dictation software for some time. However, it’s been more my anticipated fear of the experience than anything else stopping me.

Of course, I had the usual concerns over speed, errors and how the technology would work for me, but above all, I was worried I would lose my writing voice when using it for my hobby. For my awareness work.

You see, you naturally develop a writing style. You don’t sit down one day to write a certain way, it just happens – and you should let it, with minimal influence, so it’s unique to you. For me, it’s short, sharp sentences, broken up by multiple commas reiterating the point. I came from a musical background and spent a lot of years writing songs. I learned what catches people’s attention; repetition, lists of three, hooks – and I apply that in my writing. Every writer should be able to look at a paragraph and instantly recognise it as their work, much as an artist would a painting.

I had feared that I would lose this, what makes me, me, by speaking my words, rather than typing them. Of course, I was wrong. It’s stupid, really, why would I lose my voice? It comes from the same place. If anything, it allowed me to think about how the words sounded as well as how they read, and I am already thinking about how this can inject greater emotion into some of my more personal and sensitive pieces.

As humans so often do, I made a mountain out of a molehill. I pictured an outcome far worse than what would realistically happen. Yes, there was frustration, and I have a long way to go in terms of learning commands and speeding up the editing process of voice-only writing but the fear and stigma of making use of such tools has, for me, faded.

Sometimes, taking a different approach can open doors to new opportunities you never imagined – and every so often, something as simple as dictating an article for the first time can remind you that accepting help is the strongest thing you can do.

Speak soon, Joel.


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