Thursday June 23 2016 11:00 AM
I hate seeing documentaries or movies about tornadoes; they absolutely terrify me. There’s a recurring nightmare I have of being caught in a barren landscape at dusk, howling tornadoes circling the scene. Terror takes over with the thought of what is to come. I don’t have to delve very deep to know it is my fear of MS. MS progression to put my finger on it, lurking in the shadows of my mind, surfacing every now and then at night. It is always at night that our fears naturally become magnified but I also have many happy dreams where I am a young, physically strong 25-year-old again, totally MS-free for that short time while dreaming. When I wake up I feel quite cheated to find I’m 43, with MS! Our bodies never forget what was normal was, pre-MS, all those years ago. Our new “normal” states never feel quite right, and the dissonance of symptoms causes a sense of disquiet within us.
This discord between our bodies and mind increases, the less control you have over your MS. When I was younger I kept imagining I’d slipped into progressive MS, because symptoms did not go away between relapses, and kept adding up over time. In the 18 years I’ve had MS I’ve been told I have Relapsing-Remitting MS (RRMS), Benign MS (do neurologists even believe in this category anymore?) and worsening RRMS. I dreaded hearing that it might have become progressive because for me that meant a loss of any traces of control I had over how my MS behaved, and I still dread hearing it. I know some people with MS progress very slowly and it’s not necessarily a rapid decline for all, but still it’s a club I don’t want to join. With the newer medications that we are all lucky enough to have access to these days, there is the chance that we will delay our possible move to progression.
When I was first diagnosed time moved by very slowly. I was really scared and watched my every symptom with fear for signs that this was my MS starting to progress. An MS-friend had told me that it takes 10 years to adjust and I didn’t quite believe her, but I think she was correct in hindsight. I went through bad patches, bad years, bad months, good patches, good months, but when you can’t control something it’s difficult to put it out of your mind. Over time I suppose I got sick of analysing the significance of every symptom that appeared and I settled into a kind of reluctant truce with my MS. If I kept up the kind of intense scrutiny that I had at first I would have completely burnt out and driven all my friends away too.
Weirdly, although tornadoes are extremely rare in Ireland, I came quite close to a funnel cloud, a type of proto-tornado, many years ago. I was working on an excavation down the country as an archaeologist in my pre-MS years, and during that August the peculiar kind of still, heavy weather gave way to great storm clouds. To our shock a grey finger poked down a few miles away, and elongated to reach lower, but didn’t quite touch the ground. Maybe that is what I have moved on to; progression hasn’t made landfall yet, so I’ll put the panic about the future on hold.
Comments
Joan Jordan
Thursday June 23 2016 16:14
I identify with you completely Helen. Sometimes, I feel like a kid on a long journey saying "Are we there yet? Are we there yet?" over and over. The thing is that I might never get there and I am preventing myself from enjoying the trip... Thanks for sharing! Makes me feel less alone.
Declan
Thursday June 23 2016 17:24
I have those fears Helen. Not all day every day but never far away.
Christine
Friday June 24 2016 14:13
I understand, Helen. I have PPMS, but the slow progressing type. Still, I fret over every new symptom, knowing it is now part of me for the rest of my life. I also have dreams where I am normal again, where I can walk and even run. The 3am terrors too. But am always disappointed when I wake, to find I'm back to being gimpy and fatigued.
But being progressive isn't all that awful. I know a lot of MS'ers with RRMS that are far more disabled than I am.
Erica
Saturday June 25 2016 12:25
Thanks for sharing and so relieved to know those thoughts and emotions are normal. I was diagnosed rrms in 2014 still struggling to find a steady normality if that makes sense.