In her second guest blog, Joanne, tells us how her multiple sclerosis (MS) started and how it is being a Mummy with MS…
It all started with eyeliner. I was trying to put some on before going to work. I thought ‘crikey I can’t see very well, maybe I have overdone it.’ So off I trotted to the opticians, who then referred me to the hospital.
My journey began. I was told I’ve got Fuch’s disease, more prominent in people who have different colour eyes like me (I still need to be monitored for this, no, I’m not related to the late David Bowie!)
I started with daily fatigue and weakness in my arms. Googling symptoms, I convinced myself of all sorts including a brain tumour. My eyesight was getting worse. My kindle was my best friend as I could zoom in and read (like all three books of 50 Shades!) I was off work and eventually the hospital told me I had optic neuritis.
The first mention of MS started. Lots of procedures including an MRI (wear socks so you feet don’t get cold is one of my tips) and my spinal fluid was taken twice. A never ending journey of hospital appointments. I didn’t want to believe it because I hadn’t been diagnosed, which came a year and a half later so I spent a lot of time in limbo land. It was frustrating. I didn’t really have a clue about MS. I’m still learning.
As you know, there are many symptoms of MS. Mine have included daily chronic fatigue, pain, weakness ( I haven’t properly written in over two years), numbness, poor balance (falling off my bike was fun, not!) rubbish walking (I now have a stick) slurred speech (no, I’m not drunk, but probably sound it!) swallowing problems, bladder issues (what joy!) smelling of smoke (apparently this is an unusual symptom) and various other things. I was on Copaxone injections before I fell pregnant. I had a really bad reaction and ended up in hospital. I was also on Tecfidera tablets for ten months but came off recently, am waiting for a neurology appointment and debating my options.
My main thing has been trying to deal with being a mummy with MS. I found there isn’t anything that addresses how you look after yourself and a little one at the same time, so I started to write. I’ve been writing for the MS Society, other MS charities like MS Trust and Shift MS and my blog, poorlyparents.wordpress.com.
I’m no expert on mummy or MS stuff. The biggest thing I found helpful is gaining an understanding from others who are in the same boat. I’ve not met anybody like me. Maybe social media will help. Thank you for listening. Here’s to more blogs.