Episode 6 – Living with Psoriasis ft. Lucy Chambers

After a short break due to health reasons, Joel is back with another insightful episode of the Joel vs Arthritis podcast. In this instalment, we are joined by the wonderful Lucy Chambers, who has had psoriasis since childhood and is a well-respected member of the UK psoriasis community.

Psoriasis is more than just a skin condition, and it can affect people physically and psychologically. Although there is no cure for psoriasis, it can be managed – but it is often a delicate balancing act.

Anyone involved with the Psoriasis Association here in the UK will probably be familiar with Lucy. I have had the pleasure of joining her for a couple of events, focus groups etc. and she has always stood out for the way in which she talks so enthusiastically and confidently about her experiences with the condition – as you’ll soon hear.

I hope you enjoy listening to this conversation as much as we enjoyed recording it.


Connect with our Guest

You can find Lucy on:

Twitter: @LucyAChambers

Instagram: @lucyamelia8


Recommended Reading:

Joel vs Arthritis – My psoriatic arthritis diagnosis

Joel vs Arthritis – My story shared by the Psoriasis Association

Joel vs Arthritis – A week in the life of a flaring psoriatic arthritis sufferer


Links and More Info:

The Psoriasis Association (UK)

Psoriasis – NHS (www.nhs.uk)

The National Psoriasis Foundation


If you’ve enjoyed this podcast, please don’t forget to subscribe on whatever platform you are listening to this on, leave a review and send me your comments and feedback via email.

It helps massively and allows me to improve future content and episodes.

You can read hundreds of articles about chronic illness, awareness, and how I manage pain, parenting and my mental health alongside my arthritis here.

Get in touch with Joel at:

Twitter: @joelvsarthritis
Facebook: facebook.com/joelvsarthritis
Instagram: @joelvsarthritis
Medium: @joelvsarthritis
Website: https://joelvsarthritis.co.uk

Facebook private support groups: Arthritis and Autoimmune Support Group & Chronic Illness Dads


Pain.Company

The Pain.Company was created to raise awareness of chronic pain and illness. To give a voice to the millions living with daily, relentless pain. Shop here.

Pain.Company Launched!

If you missed it on my social media channels, I am delighted to announce the launch of Pain.Company – a new awareness brand and social media campaign to raise awareness of the 40% of adults living in the UK alone with daily, chronic pain.

By creating organic, sustainable and ethically made products that people love, and with shipping on offer around the globe, we hope to start conversations about life in permanent, no end in sight, pain – to give a voice to the millions suffering in silence with invisible illness and elevate the problem in the public conscience.

What’s more, ALL funds raised will go back into future ‘Joel vs Arthritis’ awareness campaigns, podcasts, support groups, new products etc.

The last two years of this little project of mine has been incredible and an absolute rollercoaster ride. I have discovered skills I never knew I had. But, unfortunately, I am now in a place where I have to turn down more awareness opportunities than things I am a part of, either because there aren’t enough hours in the day (a lot of this work takes me away from my family, and this is only likely to increase as the world returns to ‘in person’ events) or due to me frankly, not being able to afford to put in any more than the 4-figure sum I currently do to fund JvA work each year – and I hope that this new venture will not only start a conversation and create a global community around chronic pain specifically, but allow me to fund greater campaigns, that reach far more people than I can do now.

More designs being added weekly and although our products are all clothing at the moment, we have plans to branch into other areas, so watch this space!

You incredible people have supported me through so much, and the little support bubbles I have formed on platforms such as Instagram and Facebook have changed my life for the better. I hope you are as excited about this next chapter – that aims to fund more significant and better awareness campaigns – as I am.

I won’t mix the two projects too much, only where appropriate, and ‘Joel vs Arthritis’ (and associated social media accounts) will continue to be the first port of call for all of my advocacy and campaigning, my arthritis and mental health story and, of course, ‘Dylan developments’ 😉 , so if you are interested in what the Pain.Company is trying to achieve, check out the shop at Pain.Company and follow us on Instagram @thepaincompany and Facebook. It really does help other people find us.

Thank you, as always, for the support – I would love to hear your ideas, feedback and suggestions in the comments and via email. And in time, I’d love to have a collection designed by you, the wonderful community, so get in touch with your ideas!

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.

The distorted logic of depression

I’ve never found any answers at the bottom of a can,
But it often feels better than the pain, the turmoil and the rough touch of times passing hand.

I’ve never seen clearer through the powder of those extra pills,
It’s the wave of numbness – disconnect – and the promise of passing out in which I find the will.

I’ve never discovered the light in the darkness of rage,
Merely a release only violence can bring, pitting wits, unknown outcomes, through the blood, the spit and the haze.

I’ve never found reason in the condition I find myself in,
and I guess no amount of self-abuse will bring me any closer therein.

You are not alone

If you’ve ever stared at the sea and screamed, I hear you.
If you’ve ever woke from a dream in a frozen fear, I feel you.
If you’ve ever prayed to a being you’ve never believed in just to feel the words leave your head, passed your teeth, I believe you.
If you’ve ever scratched until you’ve bled to make sure you still feel, I see you.
If you’ve ever wanted to run with no idea of the destination, I’m beside you.
If you’ve ever felt loss without knowing what, I’m with you.

You are heard. You are felt, You are believed. You are seen. You are not alone.

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

What we started

What we started, you and I,
Could never be controlled.
For a deluded rare moment,
the reigns were mine alone to hold.

But as pain dug in its claws,
Dark clouds began to form.
They roll in unsighted,
Just needing the subtlest thought to be born.

Negative ideas multiply
Like the brain cells in which they’re created.
Why can a happy thought turn sour
But rarely more elated?

What we started, you and I,
Could never be controlled.
Pain turns to mental torment,
and I’m left helpless as it unfolds.

Very few will understand
The battle that rages within.
Crying alone at midnight,
As the house sleeps silently despite my interior din.

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.

I tried to be free

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.

The fear of psoriatic arthritis progression

Using the analogy of likening managing arthritis to playing a game of increasing difficulty, I explain in this latest piece how, as the years’ pass and the damage accumulates, alongside swelling responsibilities and family commitments, how the pressure to keep your head above the water increases.

As I grow older and my fingers start to twist, my skin carries its scars, and my pain remains long after the flare peters out; I find myself looking forward more now than ever.

Looking towards what may not be possible with my son as he grows, how many more tasks can my wife take off my hands as things become more complicated. How many levels of resilience do I have left?

It’s then here, in my darkest moments, when I think I am at the bottom of the barrel, do I see my strengths reflected back at me amongst the tears and the pain.

Understanding The Emotional Aspect of Psoriatic Arthritis Progression (psoriatic-arthritis.com)

In this candid and emotional piece, something that seems to become something of a trademark for my writing, I talk about the wider impact of my health deterioration and how I am progressing alongside my disease to be a stronger person.

Check out the full article here.


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