The last few days I have taken time to meditate on what course of action, or in-action, I think would be best from here on. I know I'm tired of explaining myself to doctors. Explaining that SSRI's cause side effects and that I'm allergic to opiates, and that no I do not take pain medications despite my pain, no really I DON'T TAKE PAIN MEDS!!! That led me to think about what has been sustaining through this experience. I have my faith in God. I have my family. And, I am attending counseling. Being a counselor I think that is the least I could do. I have also had support from several of my classmates who are also counselors.
I was recently in communication with a friend, a classmate, and she told me about a career opportunity she is being offered in which she'll have a private office and will partner with a pain management clinic. What are the chances, right? I thought it was pretty cool that she would be able to incorporate her counseling degree, with her eastern holistic practices while working in tandem with the western pain management office. What a fabulous idea! Why don't other pain management offices do this? She's a terrific counselor, a quick thinker and very resourceful. But, she's also genuine in letting a person know "this must be horrible for you!" and "tell me about it" and "do you have a support system" and that's when her ideas kick in!
She was a little scared after learning about my experience and wondered if she would be strong enough to help someone like me. That made me think what I, and I think any pain patient, would want the ideal counselor to offer them. Counselor to counselor, I would tell her, think of the core conditions and you're offering us the perfect experience. To the layperson it translates as:
1) We want to be listened to, genuinely. We don't want to lay these burdens at the feet of our family because they already feel helpless that they can't take our pain away and make us feel better. ~ Men feel especially helpless because they are so used to "fixing" problems and being done with them. These are not easy fixes like taking the garbage out or doing the dishes. ~ We often have to hide the pain from our children, no matter how bad it gets, or we have to miss out on family functions, which brings on guilt. We have to feel that its ok, that someone forgives us and that despite that our kids will turn out ok, we're just doing our best. ~ Women are generally caregivers and can suffer burnout from helping their partner through this experience in addition to carrying household duties. ~ A marriage can suffer if the couple does not keep sight that they are a team and are both working against the pain. They need to make time for each other, even if its just movie night at home while the kids are asleep or at grandmas. If they can't have sex, intimacy can still be found in any form that is still acceptable to both. It can be in the form of "snuggling" or just talking while looking at each other in the eyes. However, this cannot be one-sided experience, the person with the pain needs support and the partner will start building resentment.
2) To be believed. We are told so often by the medical community "it can't be that bad", that we just need to "loose weight and exercise more", or were just "depressed and anxious" which then makes us depressed and anxious. All the while we know we are hurting and the pain is real. Honestly, we are more likely to follow all of the previous advice from someone we feel is on our side and coming from a place that is caring, rather than from a place of judgment or "non-belief". Let our time with you be our sacred time where you trust us and allow us our grief for the life we have to mourn, and the life we have to adjust to because it is our new "normal".
3) To be witnessed. We want to be seen as a human being. Remind us that we are a person, a human being, and have the right to be live normal lives. See us. Not a patient, or a number, and not even as a compilation of our multiple pains, conditions, medications. Remind is that we can start by "living one day at a time and if that's too much, then 1 hour at a time". Slowly, gently, tell us that we can start with small steps like painting out nails one day, then lipstick the next, changing out of our sweatpants, washing our hair, shaving. . But, we want to be reminded, praised, and noticed for those minor changes and moments of growth that we do make. And, if we don't, its okay, you trust that we will make them when we're ready. We are not being judged.
I've heard that statement "one day at a time, and if that's too much one hour at a time" from two different people involved in my care, they had no connection to each other, and its had the most impact for me. It helps me get the dishes done, get make-up on, sometimes run errands, and sometimes not, because I just can't do anything at all. And I know its okay. I think maybe my angels sent me that message.
I know my friend will be great.
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