It has been almost eight years since I first started feeling unwell.
This was a something that niggled me at first but would go on to engulf my life at the ripe age of 22.
I’ve written about my diagnosis with Crohn’s Disease – a form of Inflammatory Bowel Disease; characterised as the long-term inflammation of the bowel, with extra intestinal manifestations in the eyes, joints, skin and bones – on numerous occasions, drawn upon it for some ‘inspiration’ on bleak days; but for the most part, that day remains as just DAY ONE.
Day One with a chronic illness.
Day One with an invisible illness.
So, what does ‘healthy’ after eight years of IBD look like?
We can see in purely mathematical approach – just look at the numbers:
Two surgeries
Six failed medications
One blood transfusion
Seventeen admissions
Countless cannulations
Ten specialists
Dozens of clinic appointments
Procedures – six scopes, thirteen MRIs, four CTs, dozen ultrasounds.
So many prescriptions for antibiotics, pain relief and stoma appliances.
Beyond numbers; my health, with a chronic illness, is a juggling act. It takes dedication, the kind that you grow into, fast. And it is hard sometimes, a real chore, a difficult task to remain positive in light of all this. But move past the medical anxiety and depression that can come with any chronic illness, recognising what you need to do in order to be – and stay – healthy is key.
I am still here. I’ve made it through all of the bad days, so far. I have made it through all the tough decisions, all the hard and complicated choices, through really overwhelming periods of time with IBD. I see that as my own measure of being ‘healthy’. Because when you have an illness that is chronic; being healthy, like you were before, doesn’t happen again.
Healthy becomes a ‘new normal’, something that you define for yourself.
And this isn’t just one thing.
For some it is being able to work again. To feel normal and just like everyone else in society.
For others, it can be returning to being active again, using exercise to maximise their efforts despite their disease.
For a few, it can be simply making it through the winter without catching a bug.
It could be making sure they take their medications, on time and every day without fail.
It could be getting out of bed and getting dressed.
It can be organising your repeat prescriptions or attending clinics.
Healthy is something that is so subjective and individual it looks different to everyone. No-one knows why IBD affects us all so differently. Why some people get lucky with medications working and others don’t. Why some come through surgeries without complications and others don’t. It doesn’t seem fair, but what in illness is fair?
Being healthy does sometimes feel like an impossible goal. But it is just that; a goal. An ideal. And it can mean whatever you want it to mean. You do you; you do what is necessary for you to feel well. For you to feel healthy. For you to be happy.
Thanks for your insightful first blog Louise, I am sure our members will find it just as helpful.
on March 19, 2019 at 1:04 pm talkhealth