This is Suzanne
My name is Suzanne, originally from Cambridge.
Suzanne has Parkinson’s disease
Basically, I’ve got Parkinson’s, which I was diagnosed in 2011, January 2011. Although my Parkinson’s now since went back quite a bit before then, and probably about 6 years ago I started developing pain with the Parkinson’s. A lot of mainly hip pain and stuff, when I’m in bed at night it’s really bad. I can’t turn over; I get set and it wakes me up.
Suzanne takes opioids for her pain now she suffers from opioid-induced constipation
But yeah, I get it all the time, some days are worse than others some days are OK. Some days I can’t go at all.
Her OIC makes Suzanne feel isolated
That kind of impacts on me because I can’t go out then, because I know I need to go, it’s there, I feel it, but nothing’s happening. That causes pain, I can’t get on with doing stuff I can’t do housework. It’s uncomfortable.
OIC can isolate people socially
Well, I used to be on this guy’s mailing list, and he basically does re-sale tickets for shows and stuff. Both in the West End and local theatres, a few times I’ve had to cancel and it’s always at the last minute because I never know how I’m feeling day to day. I can’t really text him and say, ‘hey I’ve got constipation, I can’t come tonight’. So, you kind of makeup other excuses. And he ended up taking me off his mailing list. I was actually really upset at losing that, I did get in touch with him about three times to explain you know, is there any way you can put me back on the list? He basically didn’t even reply.
Let’s start talking about the effects of OIC on patients’ lives
It’s really difficult to actually kind of get across to people how you feel. Sometimes I’m kind of quite close to tears because I’m in pain, I’m ratty, I feel bloated, I feel uncomfortable, you know. It just makes me feel quite low a lot of the time.
IT’S TIME TO STOP PEOPLE FEELING ISOLATED BECAUSE OF OIC