To describe something as not abnormal implies that it must be normal, which I suppose is the point of this post. I actually really don’t like either qualifier, so I am using them fairly loosely here to illustrate my meandering thoughts.
This entire post is sparked by a musing which strikes me round about once every eight weeks, almost like clockwork. Each time I arrive at St Luke’s hospital for my drug infusion, the grey matter starts whirring around, and I begin pondering how odd and abnormal it is that I find my life normal. I am sure I can’t be the only person living with chronic illness who feels this way, so I figured I’d share…
For around eleven years, I have been on some form of biologic drug therapy for my Crohn’s. The most common of these are known as Anti-TNF treatments. Don’t ask me to explain the science behind these drugs in too much detail, as I will be sure to come un-stuck. That said, I will have a go at shedding some light on the subject for you now.
Put simply: in a healthy body, Tumor Necrosis Factor (TNF) is naturally blocked at a certain level, keeping inflammation down. In someone with an auto-immune and / or inflammatory disease such as Rheumatoid Arthritis, Ankylosing Spondylitis, severe cases of Psoriasis, and Crohn’s or Colitis, TNF levels in the blood become unmanageably high, leading to persistent symptoms and more chronic inflammation.
Cue Anti-TNF drugs to reduce inflammation and stop disease progression by directly targeting the TNF in the blood, rather than simply suppressing inflammation as a temporarily curative measure.
Science Lesson Over
These anti-TNF therapies don’t come cheap, meaning there is usually a battle to get them prescribed, and once you are on them, you are likely to face a battle to stay on them, but they are powerful things indeed. They come in many forms: infusions, monthly injections at the clinic, and sub-cutaneous jabs or proper injections to be self-administered at home. I have tried all of them. Well, all those that had been licensed before December 2016, that is.
There is only one that has ever really worked for me, and that was the first I was prescribed back in 2006: Infliximab. Otherwise known as My Wonderdrug. Having been told about it by an old friend who is now a doctor in Australia, I had presented a case to my consultant for trying it as my next course of treatment.
I had never experienced anything like it. I went into hospital one afternoon for a slow and lengthy infusion via a drip. These infusions always left me woozy and spaced out for the 24 – 30 hours that followed.
Then I would spring up and bounce as though I had just been recharged.
You may be wondering how I could bounce more than I do anyway. The simple difference was, that with Infliximab, I didn’t need to fake it. The energy was really there. As I got closer to my next infusion, I would feel my reserves running low – my body knew it was time.
Nothing By The Book
True to form, my body had to complicate matters at a later date, developing an allergy to my magic treatment. I had an Infliximab Holiday (that actually is its official title) when I crossed the pond to live in LA for a year. That year remains the only time I’ve ever managed a full calendar cycle between consultant’s appointments. I guess there must have been something in the Californian air that agreed with me.
When I returned to the UK, temporarily settling back in Yorkshire (that’s genuinely what I thought I was doing!) before long, my symptoms had returned and I was in the midst of a fairly severe flare up. That was, in fact, the flare up which kick-started the period of chronic activity that I am just coming out of. Little did I know it would take eight years to regain a semblance of control over my body and my disease. Who knows, perhaps if I’d been able to go back on Infliximab, things would have been different….
But, if there’s one thing I’ve learnt, it’s that speculation of that sort is rarely a constructive pasttime.
The fact of the matter was, I went into anaphylactic shock within ninety seconds of my first infusion. I’m not sure my Auntie, who was my Infliximab companion, will forget the sight of me turning red-faced and wilting in a hurry. Obviously, we tried it several more times under controlled circumstances, including one drip-by-drip infusion designed to desensitise me over 15 hours. You know, just to be sure. We eventually had no choice but to admit defeat, and accept that the wonderdrug was no longer right for me.
Process Of Elimination
What followed, was a very lengthy elimination process involving all manner of medications. I had to learn to inject myself, Lovelyman had to learn to inject me, I had to go into hospital for single jabs …
We tried everything for the required period, usually noticing some sort of improvement. Yet the drug was only ever really suppressing the symptoms, rather than successfully attacking my disease. That’s something we could only learn in hindsight.
Heading Into The Unknown
With any experimental drugs, there are side effects and risks. I suddenly became incredibly susceptible to shingles, with one of my treatments. That was a less than welcome side effect, resulting in additional prophylactic drugs; drugs which were not designed to be given to people long-term.
The drug I’m on now, Vedolizumab, is still a biologic drug, but it is different from the Anti-TNFs. It targets the white blood cells in my gut directly, aiming to prevent them from causing inflammation. I go for an infusion, like I used to with Infliximab. I feel wiped out just the same too. Only, the similarities end there – I don’t perk up like I did with my wonder drug. Still, it is a piece of the puzzle that seems to be working for me, so I have to be thankful for that.
Rituals and Preparations
As with all medical interventions, there are rituals and preparations which become part of the process. There are additional injections to have or tablets to take, all designed to help the body respond as positively as it can to the drug being administered. There are also certain tests which much be done to ascertain suitability for infusion. One of these is regular blood tests which I go to my local health centre for.
The other is a dip test. That’s a urine dip, which sounds far more involved than it actually is. All I have to do, is ensure that my bladder is fairly full on arrival. So, as soon as I turn up for my infusion, after being shown to my bed, shedding a layer of clothing and dumping my things, I ask the receptionist : ‘Can I have a bedpan so I can go and do my wee – I’m bursting?’
Odd Reality Checks
It isn’t until I walk into the toilet cubicle, bedpan in hand, that I laugh to myself at the oddity of my life.
I don’t find it strange that I need to wee in a pot, meticulously cover it with paper towels and carry it to the sluice room before washing my hands again, then being jabbed and attached to a drip for a couple of hours. I don’t find it strange that the first thing I do every morning, is attach a syringe to Nelly, draw some stomach fluid up and test the PH. I don’t find it strange that my partner learnt to administer injections to my belly just four months after we moved in together. I don’t find it strange that I know how to administer two different types of injection to myself. I don’t find it strange that I have a pharmacy in my handbag wherever I go. I don’t find it strange that there’s a blood form stuck to the side of the fridge so I remember to go for my checks. I don’t find it strange that I don’t find any of these things strange. I don’t find it strange…but it is.
It’s all strange. None of it goes down as normal, meaning it must all be defined as abnormal.
Except it’s not abnormal to me. To me, it is plain and simple normality – my normality.
I could say that I think normality is overrated, and pretend that my unconventionality extends this far. However, I have to be honest and say that there are certainly days where I crave a moment of healthy normality. I would be lying if I said it wouldn’t be lovely to spend one day where I didn’t tire myself out trying to be strong and happy. Just one single day of normality in relation to health.
Saying that, I am not entirely sure I would know what to do with it if my wish were granted.
Outer Body Living
I have written before about those outer body moments of separation from reality. It is only in those fleeting seconds of detachment from myself, from reality, from the moment, that I ever notice just how many abnormalities there are in my life.
But I suppose that’s what life with Chronic Illness looks like, and thirty-three years on from diagnosis, it’s definitely not abnormal to me.