Infusion Day 💉😞
1 March 2020
Today was my infusion day. It lowered my blood pressure and made me unable to work. This isn't always the case normally I go to work straight after.
I have to get an infusion of a drug called Tysabri every 5 to 6 weeks to stop my immune system reaching my brain and spinal cord. This is because my immune system attacks the healthy insulating tissue of my nerves which is what Multiple Sclerosis (MS) is. Multiple Sclerosis means multiple scars. The process of getting this treatment involves a 2 hour stay in hospital recieving the drug through an IV catheter. This drug can lead to complications if I get an infection in my brain. There is a particular virus I get tested for every 6 months known as JCV (John Cunningham Virus). If exposed to this it can lead to PML (Progressive multifocal leukoencephalopathy) which can be fatal.
I want freedom to go overseas for as long as I want without restriction. I don't want to spend over an hour each way on the bus because there isn't sufficient disability parking at the hospital. Almost 5 hours of my day is spent getting this treatment then off to work I go for 5+ hours. It can be draining.
Please help in anyway you can so I can break free from this cycle. 💜🤞