Last week, I cried in the shower again.
It's been a long time since the pain was so bad that my only response upon waking was to cry. Between Humira beating down my RA and having learned well the intricate balance of the right blend of painkillers, my pain is usually pretty manageable. Sometimes high, sometimes less so, but rarely blinding anymore. But here we were again, the pain and I, dancing that old familiar dance. It took a few days before I came out on the other side of it, feeling bruised and fragile, but better. And when I did, I realized that I had automatically clicked into a well-established routine of coping with a high spike of pain. This routine has five essential components:
Take the Meds
My first step out of the shower was to reach for the painkillers. Not the one I usually take every morning. When it feels as if your entire body is screaming, you need the Big Drugs. I did not wait until I absolutely couldn't stand it anymore, because I know that if I did, the medication wouldn't work as well. When you live with chronic pain, you're in a race – it’s important to stay ahead of the pain and not allow it to take over. So I took the Big Drugs and followed them up with more throughout the day at the intervals recommended by my doctor. And then I gave them the help they needed to work even better with four other elements to getting my pain under control.
People with RA need a lot more sleep than those who don't, up to 10 hours a night, or eight hours with a nap during the day. Most of us don't do that because modern life is just not geared towards listening to your body's needs for rest. When you’re a freelance writer like me, arranging your day around the need for a nap is easier and I normally do. When the pain spikes, I give myself more rest than that. Sometimes it means an extra nap, sometimes it means not doing anything other than reading a good book or watching TV. Ignoring the to-do list is a challenge, but I know that if I don't, I'll end up being out of commission even longer.
If you work full time and have child-care responsibilities, it can interfere with your ability to get the rest you need. Use your sick days when you can, sneak rest on the couch while the kids do their homework and lean on your spouse for help in carving out that extra time. You may also want to look into FMLA for help in getting some time off work to heal when you need it.
This might sound as if I'm recommending it out the backhoe parked in the garage, but it's not quite that drastic. The kind of machinery I'm talking about is ultrasound, TENS, paraffin baths and the like. A couple of years ago, I got my own personal ultrasound machine and it has done wonders for my ability to control my pain. Applying ultrasound
to problem areas, such as the trapezius muscle in my right shoulder that always seizes up, makes it possible for me to work and to not cry in the shower. Other people find TENS or paraffin baths invaluable in pushing back the pain. If you want to involve machinery at home, make sure you consult with a physical therapist. Get their recommendations for what is safe for home use and some basic training in how to use the equipment. My physical therapist told me to get a 1 MHz ultrasound machine, no more than that, and she taught my partner and I how to use it safely and effectively.
So there I was, showered, dressed, medicated and had taken any shoulds out of my day, planning only to rest. My next step was to tell someone how awful I felt and since my partner was right there on the couch, he was selected as the audience. A burden shared is a burden halved, the saying goes and in my experience, it's very true. Just the act of telling someone how crappy you feel can make a really bad day easier to bear. They may not be able to do anything to help you other than offering a gentle hug or gentle words, but they know and you are now no longer carrying it alone. Hopefully your family and friends are able to support you when needed, but sometimes, it's not quite enough. Talking to someone who knows exactly how you feel can normalize your experience and maybe even offer tips on how to get through it. This connection to others who also have RA is the thinking behind community sites such as RAHealthCentral and many other groups, e.g., on Facebook. Together, we help each other get through.
On days where I wake up to the kind of pain that takes my breath away, it can be hard to remember that I have been here before. When the pain is blinding, remembering the path out of it can take a while. But every time I have been snapped back into this place of pain and found my way out again, the memory of how I did it gets a little stronger.
Time gives you this gift. Time helps you build resilience Every time it becomes a little easier to remember that this is just pain and that you know how to deal with it. When you cry in the shower, it becomes less about hopelessness and more about releasing the feeling of hurt so you can click into the routine that gets you out on the other side. And then you remember that pain does not define you, that you have some element of control over it and in a strange way, the pain becomes almost empowering.
These are my five essentials when coping with pain. What are yours?
Lene is the author of the award-winning blog The Seated View.