The Generation X Files

Part 2 to Losing my Religion

Okay, so where were we? Oh yeah that’s right, I was in a long-term relationship with the toilet bowl!

We’ve been on-off again this year but I won’t get ahead of myself…

Right then, the thing I’ve been glossing over is the amount of pain that’s involved. Not because it isn’t a factor but because pain is subjective.

I think I have a pretty strong pain threshold. I’ve also always been pretty strong, To the point where one of the (many) nicknames my mum has given me over the years is Pansy Potter. Another favourite from the Beano comic – she’s a strongman’s daughter.

With that in mind, I figured I could just live with the pain. I was used to it already. I’d just ignore it and it would go away (I think anyone with a chronic illness feels that way at some point.)

I suppose in a way I’ve been ‘lucky’ with my psoriasis. I’ve mostly been able to keep it covered and have (thankfully) never had it on my face. It’s in my scalp and hairline but a sympathetic hairdresser and a clever cut with a fringe does the trick.

It’s not ideal. It means suffering through the summers wearing too many clothes. Sometimes it means not going out at all. It depends how brave you’re feeling that day.

That’s why I decided to direct people’s attention where I wanted on my body and started getting tattoos. I’d had a little one done at 18 and it (somehow) didn’t turn into psoriasis. So, I tried a small one on the inside of my left forearm at first. If it went ‘rogue’ it wouldn’t matter too much because I always wore long sleeves anyway.

It didn’t…so I spent my fortieth year turning my shoulders and arms into a canvas of sorts. Each tattoo was carefully planned, designed and inked. Every one I have means something to me. I have had so many conversations with people (especially older folks!) because of them and I can honestly say I don’t regret a single one. It’s the part of my skin I’m more than happy to talk about!

Especially now when so many people seem to be covering themselves in inky stickers…it reminds me of a Barbie doll abandoned on a shelf in a charity shop, covered in doodles like an old notepad….Am I just getting old?

I spent the rest of my forties just getting on with it basically. I decided that if the cure was as bad as the illness I’d just wait for a better one.

The psoriatic arthritis was less patient.

I’m not going to try to describe the pain but, when I said in my last post I almost left it too late to get treatment, I meant it. I am typing this with two accusatory index fingers….almost twisted enough to be pointing back at me.

By the summer of 2024, I couldn’t ignore it any longer. I was used to hiding my skin but the pain was getting harder to disguise. I was lucky enough to be referred to a Rheumatologist who has literally changed my life.

In September of last year, we started talking about treatments. As always with medical treatments there are a lot of risks involved. And a lot of decisions to be made.

The doctor suggested I try Methotrexate again but in pill form this time. I was a little less sick this time around (4 days instead of 5 a week). It didn’t help much with the pain so at my 3-month review I swapped to Leflunomide. It took me a little while to decide to start taking this one. Leflunomide can remain in your body for a long time, typically between several months to up to two years after stopping the medication. 

I started it in January of this year. In February, my immune system repressed (but my attitude to that a little too cavalier), I contracted a winter-vomiting bug.

I…..don’t remember much about that month. I am fortunate to have a man who has not reminded me of the…worst parts!

It was definitely a wake-up call when I emerged from my bed at the beginning of March! Luckily, it was also time for a three-month review. Because, the medication wasn’t helping with the arthritic pain or my psoriasis, my doctor recommended injectable biologics.

What followed was a battery of tests over the next few months. This isn’t a treatment you can start overnight. It works by targeting specific proteins and molecules in the immune system that cause inflammation and disease. The one I use is from a class of biologics called TNF inhibitors. These carry a risk of serious infection and even cancer. The hospital’s stringent testing etc should hopefully prevent any of that happening. The rest is up to me!

I started my treatment with my biological buddies at the end of June!

I had started this treatment for the psoriatic arthritis pain and didn’t even consider it might help my skin too. I mean, I knew that was a possibility but, I’d long ago given up hope…

This August, I turned 50.

For me it feels more like 15! Honestly, I’ve had to learn how to shave my legs again and everything! I’m going into the sixth month of this treatment and I’m still learning to adapt. I am pretty much pain-free (it wears off a little a day or two before the injection) and plaque-free!

I know it might sound a little OTT but it feels a little like I’ve been reborn. I think it’s because I feel something I haven’t for a long time…hope instead of pain.

Over the years living with this disease, it often felt like people didn’t see the ‘real me’. At times I felt like I was standing in a spotlight losing my ‘religion’. That’s how the first part of my life felt at least – BB (Before Biologics).

Now I’ve got the little beasties inside me and I feel like a brand new person! It’s early days but so far so good. I know that so much off this is dependent on so many factors. I’m still learning how to live on this new medication and I’ll be tested and vaccinated regularly to make sure everything is okay.

The hardest thing has been trying to avoid infection. I’m a hugger! I’m learning to adapt to a different type of ‘bubble’ and I’ve had a lot of time to think while I’ve been inside it…

I’ve spent a lot of time online lurking on various forums reading. I read honest discussions between people and started to notice a lot of people are just as isolated, but for different reasons. It’s easy to find faults with each other but deep down we’re all facing our own battles. I think it’s time we all stopped fighting with each other!

There are so many different types of pain in this world we live in. I see a lot of people who have lost hope. I think that’s inevitable in 2025. I think a lot of it is by design…

But, I started to think maybe it’s not too late to do something about it…

I started this blog with a kernel of hope that I’d find other people who might feel the same way.

I’m happy to say, I already am 😄

I chose today’s title because everybody hurts sometimes. I wrote this post as a message of hope to hold on…I promise, you’re not alone. 👋👂

Citizen Jane x

Note: This is my experience of a disease that affects 2-3 percent of the global population. I can only speak for the treatments I have received and I am not recommending or suggesting they are appropriate for everyone.