My Psoriatic Arthritis Story.
I set up this website in mid 2017 as a creative side project for multiple reasons: to extend my website building skills, to improve my writing proficiency, to offer advice, and predominantly as a foundation to lay down my travel experiences for future reflection.
Unfortunately, events totally out of my control have left this website to gather a few cobwebs over the last year.
I haven’t done any travelling and little in the way of biking due to ill health, so instead of letting this website lie dormant, I’ve decided to use it as a vessel to talk about that too until I’m (hopefully) back on my feet – literally.
I’ll start by saying I never intended to get so personal on here; I’m usually a very private person, but people say it helps to talk/write so where better than here?
In this post I’m going to give the condensed story leading up to my present situation.
For the past twelve years I have suffered with an auto-immune condition called Psoriatic Arthritis. I call it a condition because that’s what it is. Some people refer to it as a disease but that connotes too many images of a contagious flea-bitten helpless outcast to me.
Nope, that’s not how it is.
It’s simply my immune system not operating the way it should. It attacks the cells around my joints causing inflammation, swelling, pain and gradually causing permanent damage.
Psoriatic Arthritis is an unpredictable condition that has ‘flare ups’ that can last anything from a few hours to years.
My initial flare up at the age of twenty two, lasted around a year, crippled me, then seemed to all but disappear. It left me with pain and a limited range of motion in my feet and a few other joints, but for the most part, you couldn’t tell there was anything wrong with me.
In more recent years I suffered small manageable flare ups, with one knee in particular slowly getting worse over time. I started various medications to keep it under control, developed a limp, struggled here and there but it didn’t stop me travelling or riding.
My stubborness and refusal to accept any limitations helped me lead a largely normal life.
That was until last year, 2018, when the Psoriatic Arthritis came back with a vengeance.
The first year with the condition was a very dark time in my life.
I went from being a very fit and healthy young man obsessed with personal fitness, to losing almost everything; my mobility, my job, my relationship and my home.
Suddenly I could barely walk, I couldn’t make a fist, and my days training and exercising were quickly replaced with binging TV shows with a duvet downstairs.
The outlook didn’t look good when I eventually saw a specialist. He told me I would only get worse, and at this rate of progression would be in a wheelchair within six months.
I was mortified.
Thinking about it now, I never realised just how much it impacted my life at the time. It undoubtedly changed my future and changed me mentally.
I guess I just got on with it.
The thing is, I’ve never been good at processing and confronting my emotions so a lot of that period is just a blur to me.
A fast blank cloud, smudged onto my timeline.
It’s hard to describe, but a few experiences in my life are the same, it’s almost like my brain goes into self preservation mode and erases pretty much all emotion and memory associated with them.
One of my reasons for writing about this is so I can try to understand it better.
So like I said earlier, the Psoriatic Arthritis eventually went into remission, allowing me to build my life back together.
I was thankful, I vowed to make every day count from then on.
Because I didn’t know when or if I would end up in a similar situation, I became even more impulsive yet more cautious when it came to commitments and relationships. I decided to follow my love of motorbikes and travel more, and in both of them, I found the freedom and happiness I felt had been taken from me.
Fast forward seven years, to 2014, and my left knee started getting stiffer and stiffer. The fluid build up and pain would fluctuate, and each time the swelling went down, I told myself it was getting better.
Very slowly, over time, it became harder to walk and so I reluctantly started using crutches on bad days in 2017.
The crutches didn’t stop me from doing anything – I would even have them sticking out of the back collar of my leather jacket whilst on the bike.
Later, when riding the Yamaha Fazer became difficult, I bought a cruiser (Suzuki VZ800) which was much kinder on the knees, and I strapped the crutches to the pillion back rest. I got plenty of strange looks as you can imagine. A motorbike and crutches don’t go together quite as well as fish and chips, but nothing was going to stop me doing what I wanted in life.
By 2018 the walking sticks became a permanent fixture in my life and I was starting to feel generally unwell.
I knew something wasn’t right.
My specialist had prescribed Humira injections in March to help control the inflammation, but by May I was told to stop taking them after a visit to the doctors sent me into a spiral of further visits, tests and biopsy investigations.
I had gone in primarily with stomach pains, which quickly turned into swollen lymph nodes, loss of weight, horrendous night sweats and toilet issues amongst other things.
There was mention of internal bleeding, anaemia, low blood count and an inflamed spleen. On numerous occasions I was warned I may have cancer by various doctors.
I was getting pretty worried.
So while these ongoing appointments and investigations were made, I was advised to stop taking Humira and also Naproxen – which had been my life saver helping me move for the last 10 years.
A stomach biopsy came back with Gastritis which meant I still wasn’t allowed anti-inflammatories but at least it was cancer free.
I was then referred to blood specialists to check out blood issues and my lymph nodes – the most serious of my symptoms.
These investigations took months due to cancellations and complications with my blood not coagulating like it should. This meant protocol deemed it unsafe to perform a lymph node biopsy.
The uncertainty and countless hospital appointments went on right up until Christmas.
Meanwhile, I was starting to really slow down day to day, and lost A LOT of weight. I was down to around 7.5 stone when weighed in early December, and I definitely lost more weight after that.
As you can probably guess, things spiralled out of control quickly without any medication to keep things under control.
I ended up buying a wheelchair for hospital appointments and getting out and about because even using crutches wasn’t enough to keep me walking anymore.
As I deteriorated, the reality of my situation and the chances of having cancer suddenly became very real to me. On the surface I was staying positive, like everyone around me, but I was also quietly mentally preparing myself for the worst.
Eventually it was decided I would need a couple of blood plasma infusions the day before the next scheduled biopsy to make sure everything was safe.
It sounded plain sailing enough.
It wasn’t, of course.
After having the first of two bags of plasma pumped into my veins, the nurse found my body temperature to be unusually high during observations.
I told her I felt fine but they couldn’t take any chances.
After multiple phone calls and an opinion from another doctor it was decided there was a chance I could have sepsis so everything suddenly became pretty serious. Yet more blood was drawn from one arm and a multitude of antibiotics pumped into the other just in case.
I was then ‘blue lighted’ in an ambulance to the emergency department of another hospital in a nearby town.
What followed was a long night in a manic understaffed A&E corridor on a weekend night.
I’ll say now that all the staff during this event were lovely and supportive but they were clearly struggling to cope with the amount of emergencies they had to deal with.
After many hours in a narrow corridor surrounded by people being sick, drunk, shouting and in various degrees of distress, we were given a consultation room to try and sleep in for a few hours.
It was around 5am now and Jerusha stayed with me (she’s a good egg), trying to sleep in a chair next to my bed.
Both of us slept very little and with minimal comfort.
By 7am we were woken by doctors to tell us I couldn’t have the biopsy without the plasma, then another specialist from haemotology came to say I could if I felt up to it.
We were absolutely drained and extremely groggy.
I had spent the night hooked up to fluids and my whole body felt like it had been battered.
We were taken to another department and I was hoping they could discharge me soon. I even lied, telling them I felt fine because I knew all I needed was rest in my own bed.
Erring on the side of caution again, the doctors decided it was better to keep me there for the day under observation. Yet again I was given infusions. This time I was given blood which put some colour back into my face and made me look and feel much better.
I think I counted 12 injections over the space of two days and I couldn’t tell you the volume of fluids I had infused.
Finally, I was discharged at around 10pm that night.
A few more weeks passed before the next biopsy date and this time it went ahead without any issues.
I got my results on December the 27th.
Sat in the doctors office, the haematologist told me my lymph nodes were reacting to the inflammation in my body and not cancer. Also the coagulation issues were a faulty blood factor that I would have to live with but shouldn’t cause me any problems in the future.
I was relieved, and I must admit, a little surprised after everything that had happened.
At the start of 2019 I was given the all clear to resume Humira injections and steroids in the hope of getting the inflammation under control, giving me the best chance of regaining as much mobility as possible.
Unfortunately, during the course of this lengthy ordeal and especially through January, the Psoriatic Arthritis had a field day with my body.
I can’t stand or walk, and my right arm is now very limited in movement. Arthritis in my jaw made eating very difficult over Christmas but I have adjusted to that and it has settled somewhat.
There are further swelling and deformities in some fingers and toes, along with more recent pain and swelling in my left arm, left hip and both shoulders.
The worst of the damage is in my knees and right arm.
It’s unclear what movement I will be able to regain in these, if any, and I haven’t been able to leave the house or even go downstairs in two and a half months now. It’s just not physically possible.
I use a pee bottle in bed and I have only been physically managing to get to the bathroom once or twice a week.
Showers are even rarer.
Because I can’t stand up, I transfer onto a shower chair at the side of the bed, then slowly hobble it, while seated, into the bathroom and back to bed. It takes a while to do but it’s the only way I can do it.
Jerusha has been absolutely amazing looking after my other needs, such as cooking, cleaning etc.
She has found it difficult but she has also shown real strength, and my love for her has only deepened because of that.
In general, I think I’m coping well mentally, but I know I wouldn’t have coped this far at all without her.
All we can do is wait, be patient, and give the medication chance to see if it can reduce the inflammation, while slowly working on strength and movement.
Twelve years ago a specialist warned me I would be in a wheelchair within 6 months because of this awful condition. I bounced back and defied expectations then, and I intend to now.
I will walk again.
In the meantime, I intend to keep posting updates so I can look back and see my physical and emotional progress, instead of struggling to remember/filter it.
Until I’m back on my feet travelling and creating the content this site was intended to host, I’m hoping these ramblings will provide some buffer, fill the gaps, and keep me sane!
Thanks for reading, and if anyone out there has any questions, go for it.