Where I’m At
At the end of last month, I wrote about the magic ‘R’ following my first positive appointment with my consultant in a very long time. Since then, I am learning that (not to take the sheen off the good news) remission doesn’t feel quite as good as I had imagined it would.
In that daydream, I had boundless energy – the kind of energy everyone thinks I have all the time – and genuinely felt full of beans. The reality sits in stark contrast. I am still very fatigued, digging deep to bounce in the way that everyone has come to expect from me. I still have a lot of discomfort, but that’s a massive step up and a whole world away from the constant pain I was in pre-Nelly.
I also spoke, last week, about the significance of the word itself, and that hasn’t changed at all. To think that word is associated with me and my Crohn’s is amazing. Now I suppose I just need to give myself time to digest the real meaning of remission for me; the meaning beyond the word.
No Such Thing As Textbook
Like anything surrounding chronic illness, there is no single definition of remission. Textbook cases don’t really exist, except to study from. Real people with real illnesses bring their own uniqueness to their case. Patients are not just a set of symptoms, we are complete stories, jigsaw puzzles, coloured canvases, with a million and one complex components which make us who we are.
Our history, our attitude, our upbringing, our lifestyle, our secondary conditions….they all contribute to the bigger picture, each representing a portion of the medical stamp we leave.
By that very same logic, there can be no single way to treat us. I will respond differently to any suggested medical intervention from the next IBD sufferer, who will respond differently again from the next. That’s just the way it goes.
It is something I have thought about non-stop since my last appointment.
The way I see it, Nelly was the key that finally unlocked my body’s potential to respond to all the other positive influences I was feeding it. That said, my wellness (much like everyone else’s) is a result of a cocktail of tools, treatments, attitudes, medicines and lifestyle changes.
Keeping It Shaken…Or Stirred
Let’s see just how much mileage I can get from the cocktail analogy here. Nobody likes it when a cocktail hasn’t been mixed evenly enough and the spirits, mixers and any added ingredients separate, sometimes leaving a nasty sediment, or a rocket-fuel kick at the bottom of the glass.
This is no different.
If the scales tip and the balance is lost, things stop working harmoniously. If any one of the ingredients in a drinkable cocktail is added in the wrong measure, the taste is altered. Although sometimes this is pleasantly surprising, the point I’m making is that the drink becomes something different from what you’ve ordered. It offers something unexpected. If you find you prefer that, you’ve just created a new cocktail to add to your favourites list, which is a bonus. If not, you chalk it up to experience and make a mental note not to revisit that particular recipe. Finding the right mix of wellness tools is no different – you can’t get it right every time and some of them really do leave a bitter taste. But every once in a while, you hit on a mixture that works.
So What Is The Recipe?
By trial and error over the last twelve to eighteen months, I have made adjustments to my life, not always knowing what the results of those alterations will be. Even after the event, it is not always clear whether something has had any measurable impact, but I have opened my mind to a whole host of new ideas.
1. Medical Magic
The first step was transitioning onto the latest (at the time) biologic drug waging war on IBD. Since developing my allergy to infliximab, I have clung to the hope of finding another drug like that one. I called it my wonder drug, because it was almost magical. I would go for an infusion, which would wipe me out completely for twenty-four hours or so. Then I would be super-charged. Honestly. Think Duracell Bunny on Speed. That’s how it felt. By the end of the eight week interim period, I would feel my reserves running lower and be ready for the cycle all over again.
So far, no other drug has replicated that effect, or even come close to it, so it has been hard to gauge my body’s response to all of them. For a short time, adalimumab seemed to reduce my symptoms. Scans and investigations revealed that it was nothing more than a bandaid solution, as inflammation was, in fact, worsening. Certilizumab was the same. For both, I learnt to inject myself. Lovelyman even learnt to play nursemaid and administer my jabs. The hardest part was actually finding an inch to pinch around my midsection and puncture.
Now I’m on vedolizumab – don’t worry, I won’t be testing you on the drug names, I promise. Lovelyman and I were a little sceptical as to how much it was helping, but it is all part of the cocktail and the infusions are certainly doing me no harm, so my consultant fights on to keep my prescription open.
2. Nutritional Therapy
I don’t need to talk much about this, as you are mostly well-acquainted with Nelly, but it certainly needs a mention, particularly given that it has been the essential piece in the wellness puzzle. It began 7 months ago with the unpleasant intrusion of an NG tube being pushed up my nose, fed down the back of my throat and directly into my stomach. For 10 weeks, I was on a purely liquid diet, feeding myself daily through the tube. I was allowed nothing but the enteral feed cartons I had been prescribed. My treat for those 10 weeks was an excess of sugar free boiled sweets (I think the Sula sales rocketed) and herbal tea.
Food reintroduction was slow, as you can imagine, but had to happen at the start of the 11th week so that my body didn’t begin registering all solids as the enemy. I had thought I’d be desperate to eat, but when the time came, I had to force myself.
What Was The Point?
The reduction in symptoms from the complete rest Nelly gave my insides was noticeable almost instantaneously. I went from half-hourly doses of morphine from morning until night, to the occasional two or three syringe hit within the first week. I can’t put into words just how wonderful that change was. Yet it wasn’t until I began to actually gain some weight, and to keep it on, that I decided Nelly had proved its worth.
There is a very real possibility that tube-feeding will remain part of my life, to help fill the nutritional gaps my Crohn’s leaves and to keep my weight steady. If that is the route we have to take, we will discuss switching Nelly for a PEG directly into my stomach but for now, while it’s all working this way, I don’t want to change a single thing. Besides, I’ve got used to Nelly on my face, and I think everyone else has too.
3. Alternative Treatments
I have always been a cynic where alternative therapies are concerned, and I have no doubt there are plenty of readers who will tune out at this point, roll their eyes and decide I am spouting nonsense. My views of late, however, have changed.
As a result of the powerlessness I have always felt at the mercy of my Crohn’s, I recently adopted a different attitude. I am now of the mindset, that if there is something I can try, why wouldn’t I? If there’s even the slimmest of chances it might help, that has to be worth a go.
With that in mind, I finally gave in and allowed a bio resonance therapist to use me as a case study for five sessions. Don’t ask me to explain the science behind this form of treatment, but the basic principal is that it works to harmonise the natural frequencies present in our bodies. The aim is that by doing this, our organs will function more efficiently, giving us better health overall.
After five sessions, I had seen one or two things that suggested the treatment was certainly doing something to me, and it definitely wasn’t hurting, so I decided to carry on. I weighed it up and figured that even if the only measurable benefit is that it makes me sit still for an extra hour a week, that’s not to be sniffed at.
As it turned out, the therapist offering these sessions is also a trained reflexologist, so after a couple of months, she began doing both treatments simultaneously to double the potential benefits. I am a definite reflexology convert. I love the feeling I get from the treatment, and Gabby is wonderful, always listening to what I need most in any given week.
In fact, just as an aside, it seems fitting to give her a little plug here and let you know that if you want to discuss either form of therapy with her to see how it could help you, you can contact her by email on firstname.lastname@example.org – I would highly recommend it for any existing grumbles you might have.
For now reflexology and bio resonance therapy are, like everything else in my wellness cocktail, here to stay.
4. Talking Therapy
That old saying: A problem shared is a problem halved to some extent simplifies people’s emotional baggage, but there is truth in the words nonetheless. It isn’t that the issues go away when we discuss them, but the weight of them is potentially reduced a little. I have only come to accept this in recent years, having always shunned the notion of counselling before, finding the strength inside to pull myself out of any darkness I might have been sliding into at the time.
For some reason, I saw it as a sign of surrendering to my Crohn’s. I also thought of it as indulgent; I was fine. I was managing to function without others knowing I had anything going on, so I clearly didn’t need to talk about it.
I was brought up to be tough, bottling things up and locking them away. For this, I had the best teacher in the world: my Mum. There was an unspoken sense of: if you don’t let anyone else in, nobody else will know you’re struggling. That will help you to stay stronger.
At some point in 2015, when I was having a hard time coping with Lovelyman’s depression on top of my chronically active disease, I embarked on a crockery smashing session in our kitchen. I thought it might bring some relief. It didn’t. All I got from it was a broken toe and a shortage of plates. It was then that I realised I probably needed some help to ensure that I could carry on functioning as normal, without falling apart at the wrong time.
It took me a while to find the right counsellor, as compatibility is crucial for the relationship to work, and it was an even longer time before I stopped feeling self indulgent by going. I was slow to stop feeling ashamed of it too, although I didn’t think there was any shame in others going for therapy. One rule for everyone else, a harsher rule for me.
Never in my wildest dreams would I have imagined myself announcing my own counselling on the world wide web, but then I guess life is full of surprises.
Now, I view it differently, seeing it in an entirely positive light. It isn’t something I have to do. I make an active choice to take an hour once a week where I can unravel, cry, rage against life’s injustices (among the many other things that happen in counselling) and have everything I’m feeling validated, before packing it up again and going about my business a few problems lighter.
I am not going to do the hard sell for counselling, (some people have already been on the receiving end of that in person) but I will say this: it has given me a much better understanding of myself. I have learnt the reasons for some of my less positive habits and I have finally acknowledged the direct link between my physical and mental wellness. I don’t plan to be one of those people who has a therapist forever, although if I still lived in LA that would be almost expected of me. All I know is that right now, that little window of talk-time helps. It’s just another ingredient in the big wellness cocktail after all.
5. Full-time Self-employment
Anyone who knows me beyond my blog, and even those of you who have only become acquainted with the virtual me, will probably be aware that I rarely stay still. I have never been one to take long breaks or have impromptu lazy days off. If I stay in bed until 7:30am, I consider it a lie in. So being my own boss isn’t anything to do with not wanting to work hard.
That said, what I have finally learnt to do this year on returning to self-employment, is to press pause occasionally and allow myself to breathe for a moment. I am absolutely convinced that had I been lined up to do another year at GSAL (or any full-time, high-pressure teaching post) I would have been in hospital by the Christmas break, and I’d have been in far worse shape than I actually was.
Once upon a time, I wouldn’t have so much as entertained the notion that the amount of work I did could have any bearing on my physical health. As with so many other ingredients in my magical wellness cocktail though, new insights have been found. I will still never say that working makes me ill any more than resting can make me better. However, I am aware that I am not super-human. I am, in fact, disabled. In real terms that means I should be doing less than all those fit and healthy people around me.
But I don’t.
I never have. Because I have always needed to prove that there’s nothing wrong with me. If I do more than is humanly possible for someone with a clean bill of health, nobody will ever suspect a thing. There is the added bonus that doing this also allows me no time to think about the illness I am running from. So I even convince myself I’m ok.
The arrival of Nelly put paid to all that. All of a sudden, people could see that I was clearly not alright. I still might say I’m fine, and more often than not, I will smile on for everyone, but people can see that it’s in the context of something bigger. For some reason, Nelly has almost given me permission to take a step back once in a while. I don’t feel like I need to prove my strength anymore. It’s a hard thing to explain, but I know that going back to full-time self-employment and being the master of my own time again has been an absolute blessing.
It probably seems like there should be more than five ingredients to my wellness cocktail, but in all honesty, balancing this handful of components has been the key to being able to visualise wellness on the horizon.
My remission diagnosis gives me the reassurance that I have clearly got the recipe right; just in time for my 36th birthday. It’s only taken me 33 years to figure out what I need to be as close to healthy as possible. It may not be perfect, but nothing is, and anyone who tells you otherwise is lying.
I’m genuinely happy to say that everyday reality tastes relatively good right now, and I’ll do everything I can to keep the shaker of life bobbing gently to keep my cocktail smoothly mixed and bring me closer to wellness – one sip at a time.