How do you explain something to people when you know they will never quite understand exactly what it is you’re saying? This is not a hypothetical question, I truly want to know?
I have not written in a long time because I don’t think anything I would have written would end positively, or with some inspirational motivating quote. That is just not the place I have been in lately; but, more and more I am remembering that that is okay. I have five half written blog posts ready to complete, however, I have not been able to come up with endings that I feel proud of. I am a human and I am experiencing life. I am experiencing life in my late 20s and life in a new job, life in general and life with a chronic illness. And let me tell you, that life has been shitty lately. But, that’s all relative, right?
In the next few weeks I will write about sadness and about anger, joy and hope and emotions in general, but right now, I need to write about physical pain. So, back to my first question…
Pain is subjective. When I begin to discuss my pain, whether I am education or whining, I realize that this pain is mine and mine alone. It is my own experience. And that is hard to put in to words, into descriptions, or into a daily narrative. Without going in to too much detail I will share that I have felt some variation of pain since June, daily pain for the last three months. Now, here I am not whining, though I have been to poor Michael more and more recently, I am only trying to explain. A lot of other things come along with chronic pain and here I am trying to sort that out.
The term chronic pain means that there is pain present, lasting at least 12 weeks due to many different reasons. In my case, my pain is caused by inflammation and/or nerve dysfunction. These bouts of pain can be triggered by a number of things and can be as unpredictable as MS itself. But, because of the subjectivity of pain in general, people often are unable to wrap their heads around the intensity of individualized pain. When I say I am in MS pain, others can relate to the extent that they have felt pain (which by no means minimizes the pain others have felt, in fact, their pain is probably acutely worse than mine on any day). For this reason, though, chronic pain is isolating.
I often feel alone, not by the fault of anybody, due to my pain and MS symptoms in general; simply because nobody else in my immediate circle can understand what it is I am feeling. And I am thrilled that those that I love do not have to understand what I am feeling because it is awful. But it is hard when I wake up feeling such a struggle and have nobody to commiserate with on a daily basis. Again, poor Michael is witness to all of these challenges and constantly asks how he can help, but the only response I have is “I don’t know,” or, “I will let you know if I think of anything,” ( or “to provide me with love and affection for all of eternity,” but I think he is getting sick of that response). The pain is the worse because there is not a single thing that he can do to help, other than make me a bath or plug in a heating pad.
Then comes the anger, the frustration, the sadness. Being in pain is uncomfortable and annoying. Being in pain every day is infuriating. Every single task requires extra effort physically and emotionally. I wake up early each morning because that extra time is necessary to recover from getting dressed, it is needed to recover each time I have to walk up and down the stairs. An extra 20 minutes is required to talk myself into starting the day and reminding myself of how my mental health would suffer should I choose to stay home each time I felt awful. If anybody doubted my motivational interviewing skills, they should listen to all the pep talks I give myself so often.
Sometimes, though, I allow myself to wallow in self-pity. I allow myself to mope around and be sad and feel sorry for myself. But only for a brief time, I usually put a time limit on my wallowing. Typically in these moments I take a bath (the warmth helps the pain, tingling and numbness), read a book (hopefully I am enjoying the story), or I lay in bed and watch trashy TV (a friend reminded me that MTV has some excellent bad TV shows). I go to bed extra early after convincing Michael to tuck me in because I am fairly needy and will follow him around the house until I get a hug that I deem sufficient (he truly is a saint). Or I plan lots of good, healthy meals to prepare over the weekend (I have found that what I eat is directly correlated with how I will feel). Regardless of what I do, I have learned techniques, or skills, or practices, whatever you want to call them, that allow me to mope in productive, helpful ways. Some call this self-care, and most of the time I call it that as well. Though, sometimes I call these efforts pain management or emotion regulation.
So, how do I explain to those that don’t experience chronic pain what it is I am going through? I don’t think I can, I often don’t want to. I think for me, and maybe for others, it does no good to explain it. I think for me, and hopefully for others, the most helpful and effective way to communicate this is to ask for support and to ask for what it is that will help, though each moment it will be something different. One of the hardest lessons I have had to learn in chronic illness, and in life, is that of communication and asking for help, and knowing that others cannot read my mind. Nobody knows what I need, or want, except for me. I have learned that I am only hurting myself by not expressing this.
Needing or wanting help is an incredibly vulnerable thing. In MS I have had to be vulnerable in many ways, communication though has been the most terrifying one of them all.
While others may not be able to relate to what I am feeling, that’s irrelevant; what is important to me in writing this, in whining about my pain, is that maybe, just maybe others can see the importance of seeking help and support.
These Are The Things I Have To Think About 