I am a bundle of nerves; raw and jangly, the all of me is on edge. I just went to my pain doc to try and get some relief from this “nervy flare” and had to not only explain it all to a medical resident who spoke broken English, I then, one hour later, had to repeat the same info to my doctor! It’s hard enough to communicate what is currently going on with my regular physician, let alone trying to explain it to someone who speaks a different language with me! Can you hear my frustration yet?
But, truly, I am exasperated with my on inept body; at this flare that was triggered almost two weeks ago and won’t let up. (see: Paying a Steep Price for Admission) I feel like every nerve in my body is frayed and hyper sensitive! And I mean sensitive!! How to describe this pain? This electrical, bug-crawly, burning, tingling, spasmy, hot, numb combo? It’s the Nervous Wreck Cocktail, that’s for sure! It’s like my body has decided to revolt against everything! Touch=Bee Stings; Breathing=Fire; Walking=Hot Coals; Just Being=Buzzing Electrical Wires. And the strangest symptom of all? My histamine system jumps on board and starts reacting like I am being attacked by a horde of allergens; I start sneezing uncontrollably, eyes water, face puffs up. I know, sounding crazier by the minute!
And if I can’t clearly explain it to myself, how do I expect others to understand? I guess I just hope. I hope that the doctor won’t look at me with that slightly confused visage, wrinkled brow, sad, concerned eyes, downturned lips… I can almost see the wheels in his head screeching to a halt, not sure what direction to turn next. He’s very empathetic, that’s a positive. He kindly puts his hand on my knee and apologizes for my pain. He tells me how strong I am in the face of so many difficult situations, but that he can tell how much this current scenario is negatively impacting my life. OH, really? Were the tears a clue?!
And apologizing for my pain? Shouldn’t he be apologizing for not being able to figure out how to treat my pain? I know he feels bad… I do too! But, the pain is there, so what are we going to do about it?! Can’t do any of the typical treatment modalities, because I’m either already on the highest dose of a medication or have tried it and stopped for some reason or another. He finally comes up with a “new one:” Nortryptyline at bedtime. “If we can at least get your sleep better, than hopefully the pain will follow suit.” Like I haven’t heard that one before!
And I hate this. Because it’s so not like me to rant! I don’t know if it’s the freedom and acceptance of this blogging world that has opened up this damn of pain or what. It’s these damn nerves! They set everything afire! Uh!
None of this is really helping the pain to go away. But, to know I am no longer holding this space alone (see: A Cosmic Connection) helps to diffuse it, even just a tiny bit. Thank you for holding this pain with me.
I do believe that this is the greatest gift of this forum: A sharing of energies, a collective soul. We are all going through our own struggles, yet by bringing them out into the open, we are no longer carrying the burden alone. And, selfishly, I think I hope deep down that someone out there will read my post and understand: truly “get it.” And then I won’t feel so alone anymore!
And that’s what I forgot for a moment. I’ve been afraid to let people all the way in right now. To let them see how severely I am hurting. I’ve been afraid of sounding “crazy” (I mean, come on, who says they feel like bugs are crawling under their skin?!). I’ve been afraid of getting more of the “sympathetic, she’s sounding a little wacky, but I love her anyway” looks.
I don’t need your sympathy. I need you to say, “Wow. I can’t imagine what you’re going through, but that must be really hard;” and to hold the space of pain, confusion and fear with me.
I don’t need you to try and suddenly change our relationship in order to make me better, to “fix me.”
Because I don’t know how long this flare will last. And I have to remind myself; I don’t need to figure that out. I just need to get through today. I just need to remind myself that this will pass; and, that, until it does, it’s okay to reach out to others and say (scream?), “I’m hurting!” And to admit that I can’t engage in activities right now, but that doesn’t mean I won’t always be able to.
Just for today… I need your love.
Just for today… I don’t need you to understand exactly what I’m going through, I just need you to accept me. To accept the all of me.
Just for today… I need to feel like I’m not crazy.
Just for today… I need to cry.
Just for today… I need to count the minutes, because I don’t know if I can make it through the next hour.
Just for today… I need you to know I don’t mean to be short with you, I’m just on edge.
Just for today… I need you to know I may feel fine one moment and horrible the next. I’m not trying to be inconsistent; my disease is inconsistent.
Just for today… I need even more of your love (and maybe some extra hugs, too!).