Hi! My name is Pip, and this is Harrison....

Hi,

my name is Pip,

and this is Harrison, my son, who’s two, three in August!

I have Ehlers Danlos Syndrome, I’m a mum, wife, disability activist and currently business owner. I try to be a good friend, good citizen and advocate. Sometimes I Rock it all, and sometimes I just can’t get out of bed. But I always do the best I can do.

Life hasn’t always been so rosy, I’ve struggled with depression; suicide, childhood abuse; starvation; neglect by health professionals, people who judge, narcissistic people, being treated like I’m a child, DVT’s, Brain inflammation, Gastro Failure, Being bed bound, a broken bladder even wetting myself in public!

But you know what?

You only get one chance at life.

You are stuck with the cards you have been dealt. You cant swap, return to sender, re-deal or buy new.

So I came to realise one day, after 8 long months of debilitating depression, I either burn my cards, or I play with them.

That’s it, my only options.

So I got out of bed, and started my new life.

Unemployed, no self worth, self esteem or self belief. No friends; little family and isolated. I needed a job. I was lucky I had a supportive husband, we spent all our savings on starting a little business, which quickly grew my self esteem. My circle of friends slowly growing and with my first profit we went on holiday. Success.

My condition grew worse, 6 months in hospital, near death experience due to neglect by professionals, starvation and eventually a feeding tube.

I’d always wanted to be a mum, ever since being a teen, I knew being a mother was just something I wanted. A year after my feeding tube went in, I felt I was the best I could be; so our focus turned to a child. We looked at adoption, but was told I wouldn’t be suitable, I was told getting pregnant would probably kill me.

He was worth the risk (more on that later)

Being a disabled mum is the hardest and best thing I have ever done.

By nap time I feel like I’ve run a marathon and been hit by a car. But I keep on going; keep on organising and keep on surviving.

This blog will hopefully give you an insight into the ups, downs and day to day life living with a chronic, life limiting condition and chronic pain. Let you follow our palliative care journey, hopefully for years to come!