I wrote a post some time ago called “Coming to terms with diagnosis” looking at the stages people go through before accepting their condition. The stage MSers feel most is “Fear” and this is what I wrote about it,
“The next stage is fear and this is something I can also relate to, especially when I wake up at 5am and worst case scenarios swim around my head. According to www.betaferon.com/my-life-with-ms/diagnosis-and-what-happens-next “Fear, however, may even destroy more quality of life than the actual MS symptoms do. Fear may pop up repeatedly in the course of the condition, having to be dealt with over and over again.” I feel fear the most when I have an appointment or engagement in a place I’m unfamiliar with. Will there be parking? Will there be stairs? Will I fall over? Will there be a toilet close enough? Will the toilets be upstairs?”
Another fear MSers have is fear of humiliation.
I went out on Sunday night to a wine tasting evening at The Gingerman restaurant in Brighton. This involves a lovely 6 course extravaganza with different wines to go with each course. A wine producer gives little talks about each wine and diners get progressively more cultured (drunk) and knowledgeable (drunk) about the wine.
Anyway, my fear was rising several days before the event but I made sure I was at a table near the toilets to avoid that particular issue! I was also anxious about getting there early so I wouldn’t have to hobble in past a restaurant full of people. I’m particularly nervous seeing people I haven’t seen for a while as I hate having to explain about my sticks and deal with the uncomfortable pity that’s often written all over their faces! A lot of the diners that evening were family as the restaurant belongs to my Brother and his wife but my pride and vanity still make me want to hide in the corner.
The evening went without a hitch till the very end when foot drop in my right foot made it impossible to walk. Too much wine and sitting in one position for a while conspired against me and I found myself on the toilet floor, unable to get up! My Brother somehow heaved me up onto a chair and luckily no one else was around (except my Mum) but I then couldn’t get to the taxi. We were, mercifully, the last ones in the restaurant by that point and my Brother and The Husband carried me to the taxi where I sobbed all the way home!
The humiliation I felt is shared by many people I speak to on Facebook and Twitter, stories of not getting to the toilet in time, falling over in public places and mysterious MS symptoms suddenly coming on in shops are common. But fear is also common. What if bowel urgency takes hold when you’re not near a toilet being the most horrendous fear I’ve heard!
All this conspires to keep the MSer indoors! Especially as fear and stress exacerbate symptoms and makes everything altogether too much like hard work!