Motherly (fibro) Advice
I thought I should share some of the things I’ve found that work. I understand that what works for one person with fibro may not work for another. I have personally found that painkillers do not work well for me, and before I start getting posts about the ones that you’ve found that are helpful, just let me state that I’ve tried enough over seven years to pretty much bury a horse under. I’ve also tried quite a few anti-depressants, sleep medications, anti-phlem medications and muscle relaxants. Most leave me praying to the porcelain God or feeling like I want to. I’ve tried pot, gluten free foods, cutting sweeteners, cutting out night shade vegetables, and all milk products. I don’t drink or smoke, so I don’t need to make those changes. I’ve had this crappy illness long enough to know what my limitations are for exercise and have tried everything I’ve found to address my sleep problems (yes I know what sleep hygiene means and I have already incorporated that I to my daily routine).
So this is what I’ve found that helps me:
SLEEP I was diagnosed with sleep apnea about three years before I was diagnoses with fibromyalgia. This is an area that continues to vex me. It is the primary problem that makes it impossible for me to get and hold a job. I use a CPAP machine every night and when I nap and I still found that I was falling asleep everywhere. When I attempted to work out of my home I would struggle with sleep deprivation at work, fall asleep on the bus going to work and coming home and sit in a stupor at home. I fell asleep at church, in anyone’s car, at the theater, and waiting in the doctor’s office. I would compensate by sucking down coffee, tea, and c affinated sodas. When I went to bed, I stared at the ceiling and couldn’t fall asleep. It was a vicious circle.
The way I handle this now is, well, not to work. At least not out of my house. Disability made this possible for me, though my disability income alone was a lot lower than when I worked and put me in an income bracket that is below the poverty level.
I absolutely enforce a nap on myself and make it early in the afternoon so it doesn’t interfere with my sleep at night.
I stopped drinking caffeine after my nap is over.
I also keep the house open and light. Fresh air and natural light during the day and good lighting at night help a lot.
I insist on a daily walk outside every day; not long enough to tire myself out or make me sore, but long and fast enough to make me feel awake and alert.
Sleep medications made me either nauseous or messed my sleep schedule up worse than it already was, but, marijuana, while it did nothing for pain, was great at helping me get to sleep.
PAIN
While I seem to have less problems with this than most other fibro people I know, I do have some issues I deal with. As I mentioned above, I haven’t had much luck with pain medications. They never seem to give me relief and I usually get to deal with the pain and nausea at the same time when I use them.
Things I’ve found that help are: I used a tens unit (an electrical device that would cause a very fast vibration on the sore spot and soothe it). While it didn’t get rid of most of the pain, it did help a little.
A warm bath helps with muscle pain. I have bars installed around my tub so I can lift myself onto the side of the tub, then I use the bars for support to stand up. It helps to sit on a chair to dry off and dress as my muscles feel weaker after soaking in warm water.
Walking helps. I had to start out at only 5 minutes at a time and very slow. I try to only miss one day at a time if I have a problem that keeps me from going. If I miss more, I have to cut the duration to keep from overdoing it and work myself back up to my normal pace.
Meditation is a good tool to use to help reduce stress, which in turn helps to relieve tense muscles and shorten pain duration. I also find that distraction helps with pain. Video games, reading, and knitting help me in these areas. The trap to avoid with these, however, is that you don’t want to sit in one position for too long, or it backfires and you stiffen up. I use a variety of tools to keep that from happening. Alarms on my gadgets, sticky notes in prominent places, and timers all come in handy. When the time is up, I get up and move. Do a little cleaning, change the laundry over, or just walk around the house if pain levels are high that day.
MOOD
Ok, here is where I can almost here the groans from people who read this. (Remember, I have this stupid disease also and I know it’s not all in our head, those of us who deal with it). What I do feel that needs to be touched on here is that there are ties that have been found between anxiety and chronic pain. While I would have scoffed at this at one time and jumped ahead, I have discovered that when I’m dealing with stress, I have a greater likelihood to have a fibro flare. I have certain triggers that seem to touch off my anxiety. Financial problems are right up near the top of that list and living on disability makes that pretty likely to crop up.
To help me with my anxiety and stress, as I mentioned above, I like to meditate. I tie it into my spirituality and it helps to keep me grounded.
Parks are free. I make it an effort when I’m struggling to get to a place where I can be in nature. This doesn’t mean that I start lacing my hiking boots and backpack. You can go and sit on a park bench with a good book or some knitting and just soak in the calmness.
Don’t allow yourself to loose yourself to your illness. Yes, you have to adapt and use coping techniques to do things you found easy before you were ill. You have to use creativity to be as able as possible, but it is worth it if you can find a way. Pull a chair into the kitchen while you cook, use bars on your tub, a chair in your shower. Gripper tools help to keep from bending too much. You can pull out a kitchen drawer and put a cutting board over it so you can reach to prep your food while sitting. Ask your doctor to help you get the things you need for home and work. Some suggestions I can give are pincer tools, shoes heads with hoses and sprayers, and tube to slide your socks on so you can put socks on without bending.
I surround myself with people who understand me and support me. This idea applies to support groups as well as family, or instead of family if you aren’t finding support there. When it isn’t possible to get support from another person, that’s when you have to dig deep and find your inner voice. Be your own advocate. Stand at the doctor’s receptionist, stare straight into her/his eyes and make sure that he/she understands what you need. Get her/his name and make sure she realizes that you know the laws concerning disability. I call it “sitting on the desk”, though I don’t do that literally. But it means they can’t hang up a phone and forget about you. While that may seem like harsh advice, what it tells other people is that you won’t cower and allow someone make you feel like less of a person because you don’t have an obvious disability. You should never have to look more disabled than you are in order to get the help you need. Not just at the doctor, but also when you use a disability parking placard, use a motorized cart at the store, or sit at table at a restaurant that accommodates your needs. When a stranger questions you about your rights as a disabled person, look that person in the eyes and ask why your disability is any of their business. Ask if they have a medical degree that they earned that gives them the ability to diagnose you without knowing you. Make them uncomfortable. Because they have no right to make you uncomfortable. I believe that being a chronic pain sufferer gives us an edge that non fibro people don’t have. If you can deal with all you deal with and still not show it, you are a warrior.
