According to Healthline.com
The MS hug is a collection of symptoms caused by spasms in the intercostal muscles. These muscles are located between your ribs. They hold your ribs in place and help you move with flexibility and ease. The MS hug gets its nickname from the way the pain wraps itself around your body like a hug or a girdle. These involuntary muscle spasms are also called girdling or MS girdling.
Before I knew what was wrong with me, while I was hanging out in the MRI machine (MRI Scan: A Hole In My Head)and having needles stuck in my spine, I kept thinking, “what ever it is, I can deal with it. But I just need to know what the fuck I am facing.” Once I received my diagnosis (Not An “Oh Fuck” Moment With MS) I felt like I knew who my opponent was and figured I was ready to go to battle.
On the surface, I accepted this new “definition” of me. Once I had told people about my diagnosis (Coming Out; How The World Found Out I Was “Damaged Goods”) I was open and forthcoming about what it was and openly answered questions for friends and family when asked what it was like for me. But even though back then (2007) there were already a number of amazing and informative websites, newsletters, blogs and organizations, I didn’t do any research. There was a huge part of me in denial. Although this is also just a reflection of how I face things “I have it, I can live with it. I don’t need to read about what others are feeling and experiencing.” I soon came to learn the value in at least knowing WHAT exactly might be down the road.
I was adamant that I wasn’t going to let being diagnosed with MS change me, or the life I was living. I might have to redefine exactly HOW I did things (Segway Into My Life) but I wasn’t going to stop doing things. But here is a great story of how it MIGHT have been better if I had done some of that research and connected with other MSers – a whole lot of panic could have been avoided.
The kids and I were invited to come hang out at our friend’s cabin, a trip we made quite often, and all loved. Although they were not planning to arrive until the day after we set out on our journey there, we had Bessy, our trusty “hotel on wheels” and keys to the cabin, should we need to get inside for any reason.
Although the kids were getting older and could pack for themselves, all the other necessary camping gear stored in boxes and meals simple, it always took forever to get the car packed and on the road. Driving North up I-5 through Everett, we lucked out and avoided most of the inevitable traffic and hit Arlington at about 1:00 p.m.. We stopped for gas and the kids each got a snack (healthy of course, hehe) and were back on the road to finish out the drive through Darrington and then along the breathe taking North Cascade Highway. About an hour into the second leg of the drive I began experiencing a strange sensation around my midsection. It was a tightening, cramping feeling, unlike anything I had felt before. As I drove along, it became quite uncomfortable, but more importantly, my mind began to race. Again with the damn voice in my mind asking “what it wrong with me now?!?!?” What if this wan’t anything related to MS, but something much bigger? Something that they had missed (doctors don’t know everything:)
I was very familiar with where were going, and knew that our friends would be arriving the following day, but suddenly it hit me. I was going to a small, remote area, where the closest neighbors (which were not THAT close) might not even be there, as most of the houses are just vacation homes for folks from Seattle and surrounding areas. I knew from our past trips that there was no cell phone reception (one of the things I had always loved most about our trips there, now becoming one of my biggest adversaries.) Although our friends did have a phone in the cabin, there was no local 9-1-1 response team and the nearest hospital was a long ass way away.
Panic struck!!!! The voice got louder and louder…
“What if I arrived, alone with my three kids and something happened to me? What would they do?!?!?!?”
Knowing that we would soon hit the area where cell phones stopped working, I pulled over into the parking lot of a small family run restaurant and take-out window located far from just about anywhere else. I allowed the kids to stand in line at the window to order milkshakes while I placed a call to my new doctor’s office. Up until this point, when I had needed to speak with one of the nurses, I would be put through to their voicemail and hear back from them in a few hours. BUT I didn’t have a few hours!!!! I had three kids very eager to get on with our trip and arrive at the cabin for fun and games, and I needed to know what was wrong with me…..again.
It took the receptionist a bit to locate Carrie (the nurse I was quickly growing to love) but eventually she was on the line. She immediately sensed the panic in my voice (pretty sure that wasn’t TOO hard to do, at that point.) I explained the situation “…going to a remote location, no neighbors, no cell service, no 9-1-1, three kids, tightening, crushing feeling around my ribs…etc, etc” and waited for her to express alarm and concern and declare that I should turn around immediately to return to Seattle and visit my doctor.
This is NOT what happened! Nope, this is when I began to learn about some of the “LOVELY” symptoms of this “FANTASTICAL” disease. This one being called the “MS Hug.” (BTW – who the hell thought THAT would be a good name for something that can feel like a damn boa constrictor squeezing the life out of you?!?!) Carrie explained that many patients describe it as similar to wearing a girdle, except that the tightness is from the inside, rather than the outside. I have never worn a girdle, but if THIS is what it feels like (inside OR out) I will most definitely pass on that beauty garment!:) She suggested that perhaps sitting in the car, unmoving for such a long period of time may have brought about this new feeling, but also suggested that it might be that I was simply “idle” enough to notice it. I loved that she already had gotten to know me and my life well enough to know that I did THAT; keep busy (partly because of the kids) but also in an attempt to avoid feeling bad, freaking out or letting the damn voice get the better of me and my attempts at staying positive.
She assured me that my appendix wasn’t about to rupture, didn’t have a hernia, wasn’t having a heart attack. She did suggest that stretching for a bit might help alleviate some of the discomfort – at least enough to get us back on the road. So as my kids chased after the hundred or so bunnies that live around the property of this odd little restaurant, I pulled out one of our sleeping cushions, laid it out on the grass and spent the next thirty minutes running through the few yoga poses I knew, and just generally stretching.
Carrie was right! It did help, and I did feel better. Not great, but better! I did wonder how much of my improvement was mind over matter. Once I had an explanation, wasn’t wildly thinking about my imminent demise and I was able to stop obsessing over it, did it stop bothering me as much because I then KNEW what it was and could apply my typical attitude of “what ever it is, I can deal with it, as long as I know what IT is?” OR did the yoga and stretching do the trick? I have subseqently learned that for me, yoga poses and stretching DO help some on really “bad hug” days.
I remember this vacation vividly. I think of it as one of my last moments of “freedom.” I didn’t need a cane to get around. I was able to ride my bike on the trails with the kids. Scramble down the rocky embankments of the river with the kids and dogs. I had the weird feeling in my legs and now the “hug” that seemed to becoming increasingly present, but my activities were hardly restricted by the MS and my mind had not yet become overwhelmed by the constant chirping of the voice, reminding me of having MS. In the years to come it would remind me of the times when I couldn’t do the things I had once done and the falls and foibles I have made as a result of living with the disease. But back then, on that trip, the voice and I didn’t know anything about these things.
A valuable lesson I took away from that trip was to learn more about the disease. Simply knowing what MIGHT happen doesn’t mean it will. But it sure can do a ton to assuage panic and help one keep a clear mind while trying to navigate all the bullshit that comes along when living with a chronic disease. Since that trip I have also learned that getting to know others living with the same (or similar) disease does not mean joining a pity party, as I once incorrectly thought. It means finding others with like minded attitudes, to share and support one another. I mentioned “going to battle” and have finally figured out that having the biggest BAD ASS team, armed with as much knowledge as I can get, is the best way to ensure that I win this fight against MS!
Even though I have been fortunate enough to experience some great improvements to my balance and mobility (no cane for just over 6 years now!!!!) I still remember my rapid decline, my newly defined ways of doing things and the almost all consuming thoughts through out my days of wondering what was going to happen next. One of the greatest things I have obtained from writing about my experiences, thoughts and emotions is the ability to NOT take for granite ANY improvements that I have and to truly appreciate each and every accomplishment and milestone I achieve. Just like the first time around, I may well be hit hard again sometime in the future and once again have to give up a lot of my independence, but I choose to not dwell on the when and what ifs but rather just keep plugging along and facing each new day remembering: