My Experience With The Hug
Last updated: March 2023
In 2003, I experienced something that I couldn’t name for 13 years. There was exactly one good thing about my diagnosis of MS, and that was the knowledge that there is such a thing as an MS Hug. I will never forget the first time it happened.
I didn't know how to explain what I was feeling
Our son was born prematurely, and so, for his first 2 years, I worked days and my husband worked nights, so we didn’t have to put him in daycare. One morning, when my husband came in from work, I was writhing around in bed, half asleep and in pain. He frantically asked me what was wrong, but I couldn’t put it into words. There were snakes of pain wrapped around me, and I couldn’t get away from them. He called 9-1-1, afraid I was having a heart attack. But then, as suddenly as it came on, the pain stopped. By the time the ambulance arrived, it was over. The paramedics checked me out and told me it must have been a muscle spasm and not to worry about it.
There was no consistency with my MS hugs
And so, the next 13 years began. The ‘back spasms’ came on with no regularity. Once I went 3 years without even having one; another time—one very bad Thanksgiving holiday— I had 3 in one week. Sometimes it seemed like they’d happen when I was particularly stressed; sometimes, for no reason at all. I lived in fear of them; I was psychologically and physically tortured by my own body. I never knew which day of work, personal or business travel, or family activity would be sidelined.
No one really addressed the 'why' of it all
Over those 13 dark years, I had three different family doctors; two different rounds of physical therapy; and multiple trips to the ER. Never once did someone suggest there could be a major medical problem that could be causing them. The only help I ever got was from a PT who prescribed a TENS Unit; he didn’t know I was dealing with neurological pain from MS, but just took a guess that it might work.
How it felt for me
So was does it feel like? As with everything with MS, everyone is different. But for me, my hugs follow the exact same course, only differing in strength and length of time. First I feel sick to my stomach. Since I never have stomach upset, it should be a clue. But since most of the time, they come on out of nowhere, I don’t figure it out right away. But then, I start feeling the squeezing feeling around my ribs. It feels like a wrestler with huge hands is standing behind me, gripping my sides. At that point, I know what is happening, and the silent praying and bargaining begin. I don’t want it to be happening; I can’t stop it; and I don’t want to admit it.
The worst pain happens at night
The worst is when I starts in the middle of the night. My eyes pop open in the dark, and I lie there, franticly wishing it away. I don’t want to see the look of sadness on my husband’s face when I tell him what’s happening. Then, the knot of pain starts forming on my spine. I can see it clearly in my mind, a rolling ball of agony, right where my bra snap is. At this point, if I haven’t gotten my TENS Unit on (or now that I have it, taken a Baclofen), I’m on the full ride of pain. The TENS Unit can interrupt the pain and the Baclofen works in ways that regular pain meds don’t on neurological pain. (I’m not a medical professional, but that’s what I’ve been told and have experienced.)
The full pain of my hug is unbearable
When the hug is in full power mode, I writhe, trying desperately to get away from it. The boa constrictor is around me, squeezing and pulsing. I get hot (maybe my blood pressure is up), and I can’t stand to be touched. I go from lying down, to walking, to taking a shower (maybe the hot water will help...no, it doesn’t), to lying down again, exhausted. The ball of pain on my spine takes on a life of its own. By now, it is a dark and boiling vortex of energy. Just when I think I can’t take it anymore, the pain snaps like a broken rubber band. I can feel my back and sides relaxing. I’m tired, exhausted from fighting my central nervous system. The next day, I’m better - unless the Hug returns. My back feels tight and sore for a day, and then life is good again. Until the next time.
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