Glancing back 16 months ago, I found a post I wrote at the Silicon Valley Moms Blog, entitled “Coping With Chronic Pain – Two Years and Counting…” Due to their posting requirements, I can’t reprint the entire thing here without permission, but you can click on it and read it there, and I’ll include some excerpts that I thought were relevant at this point to reflect upon. Keep in mind that I wrote the post because we were doing a topic day on ‘coping.’
I finally got to writing this post at the end of our topic day because – well – I spend so much time on various forms of coping, one of which is a deeply ingrained talent for keeping too busy. Actually things are much, much better for me in terms of my health and the chronic pain. (I usually don’t repeat adjectives, but really, they’re a lot better.) So I can’t complain and I’ll try not to make this sound like it, but your life changes when you suffer from severe injuries. Gradually, as you realize you may never be the person you once were, your perspective becomes altered.
(Then I went into some detail about my story, which has already been told here. Back to coping…)
I had to discover a variety of ways to cope with all this craziness, and depression was the first thing that struck, automatically, due to the severe sleep deprivation and pain cocktail I was served every day, all day, at the beginning. If it hadn’t been for my beautiful little baby… well, let’s not go there.
First trouble was that we didn’t have enough help. Not knowing when our baby was to be born, we couldn’t really book a doula or nanny. I wish we had. I wish we had booked someone full time and a baby nurse for around the clock. My mom and my mother-in-law both came for a little while, but it’s not the same as having professional help and my mom really didn’t remember diapering or any of that at first. In retrospect, having a staff of five probably would’ve allowed me to rest enough to save a ton on the childcare we’ve needed the following two years to help me cope, but I had no way of knowing that then. Nobody needs this much help. Everyone thought the pain would go away quickly… at first. And it’s so expensive to get help and we all feel like everybody else does it without help, why should we need it? Hah, if I only knew then what I know now.
The first year, I counted the minutes and the hours until my husband came home from work, spending every low pain moment with my daughter, being jealous of everyone else being able to walk her to the park while I lay in bed on Vicodin or whatever I was trying that week (at least after nursing was finished. Before that, it was all ice packs all the time.) I could stand for 1 to 5 minutes without much pain, then it would exponentially increase until I had to lie down, often on the floor of the kitchen if I was trying to fix food. I lost a lot of self-consciousness and I lost a lot of weight. I felt ecstatic when I was able to take more than one shower in a week.
Then I began blogging here, and honestly it saved my sanity and really began the recovery from my depression. I was able to make mom friends this way since I couldn’t go to play dates and play groups. I talked with new doctors and practitioners nearly every month. I kept on searching. Because with something like this, with a young, vibrant daughter, giving up is not an option.
At the end of the first year, my daughter’s birthday was a celebration for me more than her – at least from my POV. I was just happy we both survived that far. I lay on a fold-up lounge chair in our new house as people partied around me and spent a few minutes pushing my little one in her new push toy in the driveway. I had just began physical therapy (yes, they have physical therapists who work in there) and was feeling positive. The pain was getting to the point where I could stand for 20-30 minutes at a time without the pain onset, although I was still having trouble sitting. That was when I first suspected there might be something wrong with my tail area and began going to various specialists and getting tests to confirm it.
I think part of the difficult thing with coping with chronic pain is actually dealing with our healthcare system and finding the right practitioners – whether they be medical doctors or massage therapists or whatever. I tried the Stanford Pain Clinic but to be totally honest, it was too painful to deal with their requirements. Maybe I’ll write about that at another time, but the best thing they did was explain to me why physical therapy might help. That’s when I came up with the “try one new person a month” rule. I’m still doing it, but it’s more like every other month now. This month it’s a gyno-dermatologist. Fun, huh?
What’s difficult about this process is it requires you to keep retelling the story, but with some illnesses and injuries, it’s necessary to keep going to make sure you really have the right diagnosis and the best help possible. I’m lucky we have good insurance, but the physical therapy (that has brought me to where I can now stand 3-4 hours straight on a good day without pain), costs about $300/week very little of which is covered, so that’s a real hardship on top of Bay Area mortgages and childcare. I won’t kid about that – it’s set us back significantly.
I didn’t set out to talk so much about my story in this post, but in order to talk about how I cope, I think it’s important to understand why I have to in the first place. So here we are… my daughter just passed her second birthday in January and we just took our first family vacation (with my mom and sister to help) last week. It was relatively successful, all things considered, and we all had a good time. I was in some pain, but due to cyclical hormones, it was a lucky time to be in the tropics.
I employed all kinds of coping strategies there in the brief moments to myself, like zoning out, mixed drinks, making up stories in my head, but most importantly when my daughter was with me, I was just enjoying the moment, because I do that more now. I used to be more of a planner, and I still am, but the small moments sitting on a blanket in our back yard with my daughter when the sun peeks out through the clouds or feeding the fish together in Hawaii are extra special, so I try to hold onto them as long as possible.
About 9 months ago, a few of my new friends and I started a new web site as a hobby diversion, and it has actually taken off and is becoming a small business. Maybe I’m overcompensating for being on bed rest the majority of two years and not getting out much for the remainder of that time, but we started SFBayStyle, and we cover events, fashion, arts, dining and entertainment all over the Bay Area. It’s fun and at times a lot of work, but it’s really gratifying and a great way to cope.
At times, I have to make difficult decisions and miss events if my pain is really bad. I try not to let event organizers know about what’s going on because often when people find out you’re injured, their first impulse is to not want to hurt you and no one but you really knows what will or won’t do that… so I find that others more often will opt to tell me not to come to something when I just want to be there, enjoying the moment, not thinking about the pain, which to be honest is actually great therapy. Being at home in my regular environment, I’m more apt to notice and think about the pain than in a new place with new people and lots of activity.
I’m far from the end of my story because I have a feeling it will be a few more years before I’m close to back to where I was before having my baby, who is now a talkative toddler, and when I suffered from carpal tunnel syndrome and tendinitis back in ’97, it took about 5 years for that to normalize, so I expect sometime in 2010, things will be about as good as they’re going to get, and I’d be really happy with a 90% recovery. (Another coping lesson – learn to be really patient and to make simple goals.)
I suppose the tale wouldn’t be complete without acknowledging that all of this has taken a real toll on my husband as well and he’s been a rock picking up the slack with household tasks I couldn’t (and some I still can’t) do, letting me pursue my writing further and being super patient. He’s still coping as much as I am, but we’re now able to actually plan family events and dates and get together with other couples again, which we haven’t done in 2 years. It’s nice to have some semblance of family life again.
I hope this isn’t too scatter-brained because I wrote most of it while my daughter was next to me watching Dora the Explorer. Not my ideal way she would be spending her time, but I really wanted to write this and my husband is busy working on a special project that perhaps I can blog about next week. But to tie it off, I think the best tools for coping in retrospect for me have been flexibility and perseverance and others who have been willing to do the same. We had a couple of great nannies who have helped us over the past two years who were a big part of this. And I’ve found a couple of great doctors and other practitioners who haven’t tried to apply a cookie cutter approach but have really listened to what I said about my body and responded to that. Having smart, extremely capable, experienced, intuitive and patient practitioners has been key.
My daughter is now done watching TV, my cat is trying to type on the computer, my inflammation is increasing from the position I’ve been typing in for a while (my fault), and I need to eat dinner – yeah, at 11pm. So it’s time to go cope another way and get ready for another day. I wish I’d had more time to write the article I really want to write about all of this and how it’s changed my life, but for now I just hope this post is of some help to someone out there suffering to know that there is a light at the end of the tunnel. Sometimes it’s just a very long tunnel.