It’s world IBD day today, and as I type – it could not seem like better moment to take stock of my own life with the disease.
Yesterday I received my first delivery of Humira. Three boxes of injection pens plus a sharps box for each needle. I have a nurse called Margaret pencilled in for next Wednesday to teach me to self inject. This will no doubt be a memorable experience for both her and I, what with my phobia around puncturing skin it’s not going to be a pretty afternoon.
This new development may seem a little surprising to readers and friends given the tone of all my other blogs. I too am still surprised that it’s come to this. Previously this subject has left me bleary eyed and I hadn’t been able to write this update down until now. It’s taken a lot of emotion and late night processing for me to accept that it’s time to go down this road, as it’s one I’ve been reluctant to go down for a number of years.
When Humira had been offered to me before, I chose to instead spend my energy exploring some of the alternatives to taking this drug. I hoped to take back some responsibility for my own health and wellbeing and to feel more in charge of my decisions. I chose to clean up my diet, work on my anxiety with mindfulness, regularly practice yoga and attempt to exercise more. I know for a fact that these things in combination help me to stay well. But over the years, it’s been hard to maintain this perfect balance at all times. Sometimes life is hectic, sometimes upsetting things happen, there are uncertain twists in the plot. It’s not possible to always make the best choices, but I’ve tried very hard to take a more conscious and considered approach to my wellness overall. Everyone around me has noticed this and many comment that what I have done is amazing – which is always nice to hear.
Unfortunately though, this disease cannot always be tamed with even the best of intentions. Lately it’s scuppered plans, interrupted my adventures and my happiness, if i’m honest. I had become so fixated on my efforts to stay well, that I actually became quite uptight and uneasy about any signs of illness. I looked closely for ways to blame myself for possible wrong doings that caused my Crohns to take a nose dive. ‘It must be because I accidentally ate some dairy’, ‘maybe It’s because I forgot some of my supplements this week.’
But it came to me, that this gigantic pressure that I laid upon my head – to ‘fix myself’ was a heavy burden that was actually tainting and likely counteracting all the great efforts I was making. It’s so important to consider the psychological relationship with illness and wellness, and one’s own role in that. In short, I’m finally coming to terms with this life-long disease I have. It may be 10 years late – but I am making peace with the fact that in my lifetime, there probably won’t be a cure. There probably won’t be the major research to discover the cause instead of medicating and cutting away the effects of this chronic condition. I have to accept it is, what it is. There are 5 million of us worldwide, grappling with the same frustrations.
That being said, there’s absolutely no way I am going back to where I was before I started this journey and this blog. My Humira injections are not simply a bandage, but just one layer in a multitude of things I will carve into my routine, to keep me in remission for longer. Adjusting my diet has been really significant for me, and teamed with medication I think the future can only be better. Before now, I viewed taking Humira as some sort of failure on my part – but that perspective was, in itself an unhealthy one. It’s time to accept any help I can get while continuing to take responsibility and make educated choices about how to look after myself.
So this World IBD day, I want to salute all the other sufferers out there. Stay strong comrades! Being chronically unwell only teaches us to be more productive with the precious good days we are given. There’s 5 million of us out there, and thanks to this thing called the internet – it feels like I am part of a hearty members club full of resilient and determined people. I’ll be keeping that in mind when I come to administering my first injection.
Here’s a great little video I have been featured in for World IBD day. Please share it widely!
love Gutsy x