The twisties. Lightning strikes. The chronic. Electric shock. Boiling blood. Open wounds. Needle point.Shift a few words around, or change a verb tense and the array of words above might be mistaken for names of heavy metal bands.
They are also some of the slangy descriptors I use with my wife to explain the various pains I experience from living with MS.
· Twisties: It is not the Chubby Checker song; the origin of the name is from the twist ties used to close up bags. When I’m experiencing this, it’s as if somebody keeps twisting the tendons in my legs and arms as if they were twist ties.
· Lightning strikes: This intense pain primarily occurs around my head and face, sometimes in my abdominal area and occasionally in my hands and feet.
· The chronic: Continuous (thus the name chronic) soreness and general achiness, mostly in my legs and feet, particularly my left one. Because of this, I’m usually unable to stand, without some type of aid (for example, my cane or leaning on my wife) for an extended period of time. Busy days and weekends lead to even worse bouts of The Chronic and I’ll vary between icing the afflicted areas to enrolling my helpful wife as my own personal masseuse.
· Electric shock: Different from lightning, it is what it says…my body, usually my hands and feet, experience the sensation as if I just accidently stuck my finger or toe in an electric socket.
· Boiling blood: Sounds more ominous than it is; it’s a burning sensation, but to the point where it truly feels like my core temperature is being brought to a boil on stovetop. This mostly occurs in my arms and legs.
· Open wounds: This is more about the discomfort than the pain. Certain areas on my body (usually my arms, shoulders and legs), will develop a very raw sensation…the afflicted areas are very tender to the touch and remind me of when I was younger and used to skin my knees and elbows while playing sports.
· Needle point: I actually just experienced this while writing right now. It’s rather self-explanatory…I’ll have sudden and sharp pains, usually in my toes, but sometimes in my hands, that feel like somebody is repeatedly sticking a needle in my flesh.I don’t like bringing attention to myself and I’m incredibly reluctant to dampen any moment with a complaint or reference to my ongoing battle with multiple sclerosis. I much prefer the more subtle “grin and bear it” approach.
That method is nice in theory but the reality is I’m a husband, father of two, son, brother and friend. And although there might appear to be a short-term benefit by keeping the struggles with pain I have to myself, ultimately, it doesn’t make me a stronger person; instead, it creates distance with those that matter most.
As a result, I’ve opened up more about the kinds of random pain I have on a daily basis. But it has been a difficult process. Even writing this has been a struggle, I feel like it comes across as equal parts weakness and Debbie Downer.
Maybe it’s because I’m a male, the man of my family, so I feel it’s almost my obligation to accept the pain and move on? Blurred vision, problems walking around…well, that seems much more grandiose, so it’s much easier for me to talk about it.
But the pain …whether I’m getting dressed in the morning, reading a book, talking with my family or watching the Nationals win another game en route to their second straight division title…the pain is there. And it never really goes away.Womp, womp..