It’s such a short word that encompasses so many things. Before Stage IV Metastatic Breast Cancer (MBC), I’d experienced some amount of pain. I got into a few car accidents. Dislocated a wrist. I’d had braces, twice, along with some dental surgery. When no longer very young, I had two c-sections and a 26 hour labor before getting said c-section, not to mention the two pregnancies and four years of breastfeeding and pumping.
And none of that prepared me for the pain that I now live with 24/7.
Each of the types of pain I’d encountered in the past had a beginning, middle and an end. While some of the birthing pains I experienced (back labor is particularly painful) were pretty eye-watering, the labor did come to an end. Yes, I have some twinges every now and again in that wrist I dislocated long ago, but nothing significant.
Now, I never know what my day will be like until I stand up. With medication (oral and topical) and stretching and massage and exercise and soaking in Epsom salts and heating pads and acupuncture and so many other things I’ve had to incorporate into my daily and weekly routine, I am usually able to manage most of the physical symptoms.
And I still spend some days in bed — I get up to take my boys to school and head back to bed to rest until I pick them up.
I’ve learned more about not pushing myself, not spending all my spoons on unnecessary activities so that I have some energy left for those boys who never sit still. I’ve learned not to be shy about asking for a wheelchair or assistance when we go places. I’ve learned not to avoid driving our golf cart in our neighborhood rather than walking, as was my habit previously. I look for chairs and places to rest when out and about.
I’ve learned to navigate this physical pain that will never leave.
But what is so much harder to navigate are the psychological impacts. Pain management doctors rarely talk about how pain is not just physical. It’s not too difficult to get pain medication prescribed for physical pain and to get a crash course in managing opioids and other medications that have other and often lasting side effects than just tricking our brains into not feeling the physical pain. What these same doctors often overlook is that there is an element of living with pain that has nothing to do with the actual pain itself.
When pain is chronic, you have to adjust your entire like to accommodate it, to manage it.
When pain is chronic, there is no escape from it, it is your constant companion.
When pain is chronic, there is no light at the end of the tunnel.
When pain is chronic, it can take over your life.
When pain is chronic, you make different choices, you have different priorities.
When pain is chronic, your world shrinks.
When pain is chronic, there is often no room for anything else.
When pain is chronic, your decision making is horribly skewed.
When pain is chronic, you become a different often unrecognizable person.
When pain is chronic, you push away the people who are trying to help.
When pain is chronic, the pain becomes your whole world.
When pain is chronic, choices that seemed illogical and inconceivable become seductive.
When pain is chronic, you need different care.