Hello! Welcome to the first post on The Gutless Ninja!
I wrote the first post on the 23rd of May, when I was still in hospital. Unfortunately, I didn’t manage to post it due to a number of reasons but I didn’t want it to go to waste as I still remember the bone-numbing weariness I felt when writing it, the effort I put in.
We haven’t had internet at home for a few weeks now and I promised myself that I’d get cracking with this blog as soon as were connected again. So hopefully I’ll be posting more often.
I wasn’t sure if I should write anything today. It’s not one of my ‘good’ days. I’m achey, tired, in pain and just want to drug myself with painkillers and sleep. It’s the 12th day of my stay in hospital and it feels as though some huge thugs came to batter my body in the night. My stomach hurts and I feel nauseous. I have a headache and want to growl at anyone who comes too close.
On the other hand, this is actually a ‘good’ day. Pain is an expiation of sins. My prayers have a very good chance of being accepted. As I was told by an Aalim (Islamic scholar) in the family yesterday: ‘When unwell, we can build such a spiritual connection with Allah which we aren’t able to do when healthy.’ And THAT is something I’m grateful for.
Even now, four years after living with UC, I struggle to say that I’m anything other than fine. I know I must be patient, that there is a reason for this. I’ve accepted that and I’m grateful for the blessings in my life. I try not to complain, I mostly keep a positive outlook and this keeps me going. I have some amazing friends who have shown me the most incredible love and support over the years. I’m truly grateful. But I’m also struggling. This is what patience is about. The smile on my face will never let on that I’m finding this hard. Looking at me, you won’t guess that it’s taking every ounce of my energy to try and smile so as not to worry my family and friends.
So I’m in pain due to the drug I was given last night. It’s called Infliximab/Remicade. I call it mouse juice as it’s made from mouse protein. It was injected into my vein through a drip (11th attempt at getting a needle into me. It’s not a lot of fun) and it’ll knock back my immune system. It takes a few days for my body to come to terms with it.. Do I become worried and upset about what’s happening? Heck no. I’m grateful for this. It means that my immune system will hopefully stop attacking me for the next 5-7 weeks. Then I can pretend I’m normal for a bit before my body realises that it’s free to attack again.
I’m going to stop here for now. Hopefully I’ll be discharged today so I can go home and sleep.
I was discharged that day and it hasn’t been plain sailing since. But more of that later!