I am scared.
And that is okay.
There is always a little fear when it comes to thinking about your chronic illness. There are alot of questions, not enough answers, you wonder about alot of what ifs and you can sometimes panic with the overwhelmingness of it all.
I used to scold myself for being scared and doubting myself, when it came to my illness. It was never going to be ‘perfect’ or act the way we – my doctors and I – intended. Unfortunately, it was just going to be what it was, and we would act appropriately to what was in front of us at the time.
So we set about amending my treatment; trying new medications and doses, monitoring my illness through scopes and scans, doing everything to balance keeping me ‘well’ while on treatment without over or under treating the side effects. That balancing act was a huge effort on everyone’s part, it was exhausting.
We did finally get the balance right – and right for a long time – when I had my colon removed and my ileostomy formed. I bounced back in a really good and positive way – thank you stoma, you saved my life! – so much so that I could finally come off medication. For the first time since being diagnosed – a long and hard six years.
But after six years with medications and procedures galore, having none of that was weird. Oh of course it came with an initial exhilaration of ‘finally I am free of the hospital and constant barrage of pokes, prods and conversations’ but that soon wore off. And what was I left with?
I am scared.
And that is okay.
The first time I scrubbed my infusion dates out of my calendar I felt some loss. I felt someone was snipping at the net I was safety in, knowing my team could see me in the hospital when I was there. I felt alone, managing my disease – my symptoms, my good and bad days, my mental health – was down to me and just me.
Logically and practically, I knew that my nurses and consultant were a phone call away but it felt weird knowing I was not being reviewed all the time, because I wasn’t take harmful drugs or dealing with side effects. At times, we didn’t know if my side effects were drug or disease related – it was all abit hazy. What if this began to happen again? It would be my disease this time for sure, right? I was left feeling overwhelmed. I felt scared.
But feeling scared was and is okay.
It is now almost four years since my colon was removed. I have had my rectal stump removed since, I’ve also been on the same medication twice in that time too. But nowadays, I am medication free and have been for just over six months. It is a scary time because we are living through a pandemic and those on IBD meds are at higher risk and are in long term – 12 week – isolation. I am not.
I remind myself that I am safe, I am at home.
I remind myself that my team are a call away, an email away, a visit away. I am not alone to deal with new symptoms and issues during this pandemic.
I am reassured that being unwell – normal unwell with my IBD, ie a flare up – is not a fault – or even my fault – and it is not a failure.
I am reminded that being scared is a positive thing because it means you are fighting.
And I am reminded that I have the strength in me to get through this.
Do you have any questions or queries? Or just want to share your own experiences?