The long road keeps getting longer - Joel vs Arthritis
My Arthritis Story

The long road keeps getting longer

Firstly, I want to apologise. Apologise that this post is coming so long after the event in which I teased about on my Facebook page. As you will go on to read, the news I received from my hospital visit was neither expected nor welcome.

When I wrote my account of what happened, I wanted to ensure that I was doing so from a place that had not only given me time to reflect but allowed me to tell the story at a time that I knew would not be detrimental to my mental health. This is the latest chapter in my arthritis story.

The need for light at the end of the tunnel

Two weeks ago, I had a long-awaited consultation. The last six months have been extremely challenging since a run of infections that seem to have triggered some sort of overreaction in my immune system.

If the last six months were tough, the last three during this pandemic have been the hardest of living with arthritis in my life. The face to face consultation was a risk (thankfully, no COVID symptoms since) but it was one I certainly needed to take. I was desperate.

I had told my doctor on the phone the week prior that there was only so many weeks I could cope like this. Some days, I have been in so much pain that I’ve wanted to jump through the window. It sounds dramatic but if you’ve ever been in that level of constant, non-relenting pain (and I hope for your sake that you haven’t), then stupid things start seeming quite appealing. Just to experience a different sensation, if nothing else.

There is nothing so cruel in this world as the desolation of having nothing to hope for

Haruki Murakami

A surreal experience

Going to the hospital for the first time since the global pandemic started was a strange experience.

For a start, I could park in the nearest car park. Which was not only unheard of but very welcome given I was reliant on the use of a stick that day. The next thing that struck me was just how many people (non-staff) were wandering around the building and public areas without masks on. Just the week before there had been a clear change in the message around face coverings and the hospital were insisting on it for any appointments. However, that theme changed as soon as I reached my clinic.

I gave my details to the receptionist at a distance clearly defined by hazard tape and barriers, which was a challenge in itself. You try shouting ‘Joel‘ through a facemask several meters away and see how many ‘George? John? Paul?’ you get before they land on Joel! The whole time this amusing yet equally frustrating experience carried on, a nurse in full PPE was taking my temperature and asking about any signs of cough, fevers etc. I had experienced in the last 7 days.

The long road keeps getting longer - Joel vs Arthritis

Once I was cleared, I was ushered through to the familiar rheumatology waiting room at the NNUH. However many hours of my life have I spent in that room? Except for this time, it was very different.

The waiting room had been divided into two, using makeshift objects such as office dividers, chairs and even a hospital bed trolley that you’d see more at home on a ward. More importantly, I was completely on my own! There were no posters on the walls, noticeboards bare, no trollies with my usual 7-10 inch stack of medical notes. It was like I was sitting in a storeroom or an abandoned part of a building.

It was very strange but for somebody in my position, weirdly reassuring.

The consultation

For this appointment, I saw a new Dr, this was due to the COVID situation. The Dept. had to find a Dr that had not been on a COVID ward for at least 7 days and given many specialists were still helping with the pandemic effort at the time, it was easier said than done. I literally didn’t get my appointment time and location until a day or two beforehand.

I was fine with a different Dr, however. Although I have a complicated history and it’s always frustrating repeating the usual ‘need to knows’, such as how my inflammation has never shown on blood tests and that my joints don’t typically swell. I welcomed the opportunity of a new opinion given everything that had happened over the last 18 months.

I won’t go into every detail but there were two main takeaways from the consultation to note.

It’s juvenile arthritis, regardless of age

The first being that the Dr informed me how it was irrelevant what my disease evolved into (e.g. ankylosing spondylitis in my teens and psoriatic arthritis in my 20’s), my disease should always be referred to as ‘juvenile arthritis‘ as I was diagnosed before the age of 16. This didn’t really bother me but it did surprise me.

How did I get to 35 years of age without ever having that technicality explained to me? It explained why I saw so many different diagnoses used on my records but the JIA one kept reappearing.

He also educated me on something else about my disease when I mentioned how I seem to get more complications, strings to the disease’ bow as I get older (it was a throwaway comment which I presumed was common in arthritis with age). He explained how they typically expect to see “evolution” of the disease in people with juvenile arthritis until their “mid-forties and then it tends to stop”, leaving you to deal with what had presented up until that point.

Now, I knew he meant to give me this information as a positive – i.e. I’m well passed halfway in that journey. However, at the time, all I could think of is how I have potentially another ten years of worry about what else is going to crop up or go wrong.

This changes everything

Next, comes the real sucker punch. After a physical examination and look at recent test results, what the Dr told me next hit me like an 18 stone forward on the rugby pitch that I didn’t see running at me on my blindside.

He told me that he couldn’t find any signs of active disease. My tests were good, inflammation markers minimal, a load of biologic in my system, no antibodies suggesting a resistance to the treatment and nothing he could find on physical examination. He also said that how my skin had cleared up “beautifully” was also a good indicator of no active disease.

He had a point. I haven’t had any real rashes in a couple of months, toenails had stopped pitting and falling off since Humira was re-introduced at the end of 2019 and any lumps and red-coloured joints had eased over the last couple of months – but why am I still in so much pain!?

The Dr said that he would arrange some scans on my hands and feet as a safety measure but that he was confident that my arthritis was well-controlled now. Obviously picking up on the confusion and shock in my face, he hurried to explain the next part of his theory.

“A pain problem”

He explained that if active disease was present on scans, then it’s good news (never heard a rheumatologist say that before!). We move to a new biologic and it’s most likely an “easy fix”. He later went on to say he was “hoping it was active”, given the alternative. Which made me feel uneasy.

However, if there is no sign of disease on the scans then I have a “pain problem”. He explained that through a mixture of years of damage and from being in pain for so long (January 2019 with this current flare) my brain/central nervous system can “still fire off pain signals to areas where the disease was active or damage is done”.

So although the arthritis is now controlled, I am left in exactly the same pain in those areas. A bit like an amputee who still feels pain in their missing limb.

I had a brief moment of panic. I felt a combination of fraudulence, am I just imagining this horrific pain? and fear, so how the hell do we fix it then?

The doctor, again reading my concern, jumped in to say if that was the case, then it would be for pain management, my GP, pain psychology and a lot of support to help me “learn to live” with the chronic pain.

I recall the doctor being really sympathetic, giving me time to process and asking me to take my time whilst I think of questions. But to be honest, what happened between that point and driving home, I can’t really remember. I was in a daze.

Reflecting on what could be the new norm

Now, I’ve seen enough documentaries and read enough books about my heroes from music and sport to know what can happen to those in pain most of their life. The dependency on painkillers, the depression, relationship strains or worse. I know it’s a miserable existence, not just from what I’ve read but what I’ve experienced these last six months or so.

This was all I could think of for the first day or two after that news – that and the fact that I had waited 3 months to get access to Pain Management only for everything to be cancelled at the start of the pandemic. If they were the service that was to support me through this, how on earth do I get back on their radar on what’s sure to be an even bigger waiting list now!?

I also spent days wondering how I got to a position where I was hoping to find a warzone on my scans as a preferred alternative to nothing, and a life of pain with no end in sight.

I went quiet for a couple of weeks, withdrew into my immediate family to process the news. On top of the lockdown and shielding situation, this felt like another blow in a period of time that seems to be determined to find my breaking point.

Finding a way through

I took some time and took the opportunity to get outside, now that the Government had lifted some of the restrictions on the shielded. I didn’t feel any safer, the risk was still there, but I needed to move. To see outside these four walls for the sake of my mental health. This gave me much needed thinking time but it also had another, unforeseen benefit.

The first walk hurt, an awful lot. After all, I hadn’t really moved over the best part of 2-3 months. I knew that it was this lack of mobility that had reduced me to the use of a cane. The next day hurt much more but strangely, I was happy. For I was in pain because I had done something rather than in pain when I had achieved nothing.

Over the last week, I have slowly increased my activity, walking further and more regularly each day. You will hear me talk about ‘breaking the cycle’ a lot on this site. Where I make efforts to stop the spiralling pattern arthritis can cause: pain = reduction of movement = weight gain = greater issues with your disease and therefore more pain. However, in order for me to break the cycle, I have to be in the right headspace.

The last six months have broken me but weirdly, this news seems to have been the kick up the backside I needed. It’s taken far too long but I am finally fighting with intent again.

Regardless of what the future holds, whatever is or isn’t on those scans. I hope I can continue getting back to the positive ‘this is what you can do with arthritis’ Joel that I used to be. It’s been far too long since I was able to write something positive on this site.

The long road keeps getting longer - Joel vs Arthritis

Stay safe.

13 Comments

  1. As a fellow life long adjust to pain forever sufferer, I totally here you. Though mine is from ehlers danlos syndrome and arthritis, I know it’s frustrating to realise, this is it, life will always be like this. For me exercise and walking when I can, really helps me mentality and physically, helped me deal with pain differently, more productively. Hope you find a way to forge a new path

    • Thank you. It certainly is a very strange feeling to think there isn’t something you can do or take to fix it. I’ve always been able to hold onto hope, this procedure could help or that treatment but this one really feels different. I can’t go over or round it, I have to go through it.

      • I remember this well, like you I thought there just ‘has’ to be a way, but there isn’t. That’s not to say I’ve given up on hope,more of a place to build on, well for now it’s as good as it’s going to get, so work around it,with it,in spite of it. Ironically coming off tramadol for pain was my best option, I manage painmore with heat, rest and compress as some pain killers I swear were making it worse

    • Debbiehipster – I don’t suppose you’re botanical painting Debbie from somewhere near Bungay? 😊 Just wondered as EDS isn’t common …

  2. Blimey, Joel. I am lost for words, my first reaction was sadness but after reading entirely, I feel a mixture of emotions for you. One thing for sure is that you are strong, it may not be easy but everything is adaptable one way or another. Always here for you my fellow country bumpkin 💚

    • Thank you Ami, means a lot. Hardest post I’ve had to write, two weeks in the making but it would have been a very different article if I’d have thrashed something out at the time. I’m glad I gave myself time to find a positive amongst the chaos. I set this site up to be a positive example of someone living with arthritis but it’s been extremely difficult to maintain with the run of luck I have had in the last few months. x

      • Unfortunately, life is not always positive. That was my intention, to share positivity of having my conditions, but I realised I would be lying. So, I’m honest, as are you, is it really possible to always be positive when sharing our stories? Personally, no. Sorry I’m waffling 💚

  3. Ouch!! Did not see that one coming! Seems weird to say sorry your disease isn’t active …so I won’t! I believe though that while chronic pain is an awful thing, there are all sorts of strategies for dealing with it. Sounds like you are finding some for yourself which is great and I really hope the pain clinic is useful when you eventually see them. As I understand it, when you’re in constant pain for a long time your brain literally rewires itself to keeping those pain pathways open – which has nothing at all to do with imagining it or making it up! However, our brains are amazingly adaptable and plastic, so can be persuaded that they’ve made a mistake! It’s a matter of finding what works for you.

  4. Rick Phillips

    Motion is lotion, the question is never what to do (move) but how much lotion you want. I know it is darn tough, I have been there. But it is absolutely true, motion is lotion and more motion and lotion is better

    • Yes, my Drs have always told me to ‘use it or lose it’. It’s crazy how many people you see in waiting rooms which have given up that fight. It sounds terrible but sometimes just going to the hospital alone and glimpsing a potential future me, is enough to snap me onto a better path.

  5. Pingback: Shielding 2020 - An upsetting experience that we must not forget - JoelvsArthritis

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