Another one of those horrifying MS bombshells like intense pain, chronic fatigue, numbness, possibly needing a wheelchair, vision problems… the list goes on.
Relapse remitting MS is a strange illness in that in many cases you can have long periods of feeling well with few or no symptoms. For many years I was in total denial about my illness because bar the odd flare up I felt pretty normal and had no long-term problems. I am one of the lucky ones.
I think my denial has served me quite well in terms of positive mental outlook – many people don’t know I have MS and in the past when I was feeling well, I could almost act like the diagnosis was a big mistake. However MS has a nasty habit of pulling the rug out from under your feet and just when you think you have got it sussed, your body can let you down in some quite spectacular and humiliating ways.
Five years ago, completely out of the blue, when I was in town doing some shopping and wearing a nice Boden dress, my bowel decided to stage a hostile takeover of my life. Nice one MS! Thanks for that, it was just what I needed to put me in my place; to remind me that I am at the mercy of my wonky immune system. I won’t go into details apart from saying that I may have psychologically scarred a ladies crown green bowling team who happened to get in my way as I made my frenzied dash for home. “For fuck’s sake, GET OUT OF MY WAY!” I screamed, whilst laughing hysterically at the absurdity of this pink polo-shirted brigade bearing witness to a fortysomething crazed woman pooing her pants in the street.
Thus began my five year battle with a phobia of losing control. MS had provided the kindling – a mis-firing neurological message mimicking a very common physical symptom, that my brain then proceeded to pour a shit load of petrol over and allowed to rage like a towering inferno. Anxiety took root quickly and ruthlessly and within weeks I didn’t want to leave the house. I hate giving in to anything, so I made myself carry on as normal but even walking down the hill to pick the kids up from school felt like a massive mountain to climb. The rational part of my brain was completely overwhelmed by the irrational fear that it would happen again and I was angry and resentful that my body had let me down. The anxiety fed the physical symptoms, adrenalin would course through my body at the thought of any activity that involved being too far from a toilet. Train journeys were torture, I necked buckets of gin to get me through flights, I developed an intricate mental map of all toilet facilities within a 5 mile radius if I ever left the house. It was so boring, being a slave to this thing, this malign creature that had taken up residence in my brain.
MY GP eventually suggested a few months of anti-depressants and a course of CBT. One day the CBT therapist was doing “Worst case scenarios” which went something like this:
Therapist: What is your worst fear?
Me: Shitting myself in the middle of the street in front of people who know who I am
Therapist: So what? How would they even know?
Me (shouting): “I DON’T KNOW, PERHAPS FROM THE SMELL EMANATING FROM MY JEANS!”
Let’s face it, there is no good spin that you can put on a healthy adult losing control of their bodily functions in a public place but bless her, she meant well.
Hypnotherapy was my next port of call and proved to be the most useful of all the treatments I have had tried but to be honest it has been very hard work to vanquish this monster. This is a problem that is 5% physical, 95% mental and as anyone who has ever suffered from mental health issues knows, recovery can be both complex and challenging.
MS Fun fact #186: 50% of people with MS with suffer from serious depression or anxiety during their lives.
The reason I can write this all down now is that I have emerged *mostly* triumphant from the other side. I cannot say for sure what worked in the end but it is probably a combination of all the techniques and tricks I picked up from my CBT and hypnotherapy sessions and also time itself being a great healer. I just wish it hadn’t taken five years. It has also taught me to treat my MS and mental health with a little bit more respect.
*Title credit goes to my 14 year old daughter!