I was diagnosed with fibromyalgia when I was 22 years old. Determined to live a normal life, I sought out the help of support groups. I found a recurring theme in these groups: the members wanted to talk about how bad their lives were. While I thought it was healthy to talk about the emotions and circumstances we were all facing, I didn’t find it very helpful with answering my questions of how I could lead a better life. I wanted to learn more about how I could live with fibromyalgia, and the coping skills I would need to function in the world. After 14 years of experience, this is what I have learned.
1. Do your research.
A person needs to be careful these days while looking up information on the internet. That being said, the internet can be the best treasure when you want to research information. When someone first hears about fibromyalgia, they research symptoms, causes, and doctors who specialize in this condition. While these are very important topics to cover, you can discover so much more when it comes to being proactive about your learning and coping. Some of my most favorite topics are: lists of foods that do and do not cause inflammation, biorythms, streamlined organization of both time and living space, low impact aerobic exercises, meditations, better sleep, and active ways to boost my energy. You yourself can learn about any topic you want, and make your research about your will to thrive. The possibilities are endless.
2. Get familiar and comfortable with making lists.
I found that the more pain I felt, the less likely I was to remember things. Most people with fibromyalgia experience some sort of increased brain farting. I had a lot of pride and I didn’t want to admit that about myself. I didn’t want to write things down, at first, because I believed that decreased memory was sign of weakness. Now I understand that writing things down is beneficial for anybody. Short-term goals, long-term goals, to do lists, chore charts— making a list is not a sign of weakness, it’s a sign of getting your life back in control. You and I have the power to list all of the things we want to achieve in life, and then break those desires into daily pieces of activity to complete. Big goals become more attainable and less overwhelming. I have realized that when I make lists and follow through with them, I get more stuff done and feel more relief.
3. Create and equip coping kits.
What does that mean? We all have a first aid kit fully equipped with bandages, ointment, scissors, and tweezers, right? It’s all in one location, everything tucked in it’s place, and easy to reach. We can do kits for other areas in our homes. I have a snack station kit (next to my bed for easy reach in the dark), a travel kit for my car, and a body grooming kit in my bathroom. I plan to create a “kitchen kit” where I put all the frequently used utensils in a drawer next to the stove. I want to create kits for my hobbies, for my DVD/ movie watching area, and for writing. If I have fully stocked kits around the house for different things I have to do, I won’t be running around, wasting time and getting stressed because I can’t find something. I’m all about having less stress in my life. Think of your favorite places and favorite activities, and how nice it would be to have all the supplies you need organized in a central spot, ready for immediate use.
4. Think about your limitations and set up your house to accomodate your needs.
It’s time for you to be really honest with yourself, here. Think about your general pain levels. If it’s painful for you to reach up into high places, put the most used appliances/ items in drawers, shelves, and countertops that are at waist level. Do the same thing if you have difficulty bending low to reach things. If you have difficulty going up or down stairs, try to do all of your living on the ground level until you feel stronger. If lifting heavy things hurts you the next day, make sure your furniture is arranged exactly the way you want it, because you can’t change your mind later on. Okay, just kidding. Obviously you can hire movers or get the help of a friend for the heavy lifting. If possible, hire landscapers and a cleaning service for those times when you feel like you’ve been hit by a bus. Clear high-traffic pathways in the house to prevent a face-plant into the carpet.
5. Get as organized as you possibly can.
” The power just went out! Okay, the candles are in the hall closet; I can take 7 walking steps to get there.” It’s really cool (in a James Bond sort of way) to be able to do that, to be able to find things in total darkness. The point is to know where everything is, and you can’t do that unless you stay organized. Organize everything you can think of– from your medications to your well stocked pantry– in a way that works best for you. If you need to put your medications into a dosage pill box in order to keep track of them and not lose them, then go for it. If you like having your pantry items in alphabetical order or grouped by color, knock yourself out! If you can memorize where things are, then you are organized. Put things you need in places you will remember quickly, because it’s very important to be able to automatically know where to go to get what you need in a time of crisis. It can be a lifesaver when you know for certain that whatever it is that you need will always be in it’s designated place.
6. Save complicated tasks for better days.
This is especially important for women because of how our menstrual cycles can affect us. Keep a journal of moods, activity and energy levels, weather, where you are in the menstrual cycle, and current circumstances for a couple of weeks to a month. Make small charts if you don’t feel like writing and recording everything. Make a video diary if you want. What will happen is that you will notice patterns of energy and pain, and you will learn what zaps your energy at any given time. For example, I get migraines whenever a big thunderstorm comes through. If it’s Sunday and I know a big storm will be coming through on the following Thursday, I can cook some extra meals and freeze them. When Thursday comes round I will be in pain, but I won’t have to cook. If you are a woman and you learn that you feel better when you’re ovulating and lousy when you are menstruating, you can plan the bulk of your working/ shopping/ cooking/ any task that requires concentration during those days in the middle of your cycle at the time of ovulation. You won’t be stuck doing an engine overhaul while you are bleeding, because you will have already completed that task beforehand.
7. Keep your medical records handy.
If you are knocked out cold, it goes without saying that you will not be able to tell anyone your medical history. Even in consciousness, if it’s a crisis situation and people ask you medical questions, it will be next to impossible to remember all of the answers. Everyone gets flustered in those situations. To give yourself an advantage, make medical lists. List all of your allergies– the allergens themselves and your reaction to them. If you have rather large reactions to a common item, such as an allergy to latex or an antibiotic that would make your throat swell, it is helpful for everyone if you wear a medical ID tag/ bracelet. Make a list of all of your medications that you are taking, and be sure to include the milligrams per pill and the dosage amount. Don’t forget to list why you take them. List all of your surgeries and illnesses/ conditions. Keep this info up to date; anytime there is a change, record it. Put it in a place that people can easily find, like right next to the main telephone in your house.
8. Don’t over exert!
“I feel awesome today! I am going to do 30 minutes of exercise, clean out the garage entirely, do all 7 loads of laundry, and cook for 4 hours.” Does that sound like you? I still think that way. I get discouraged by my perceived lack of progress when I feel lousy. So on the days that I wake up feeling normal, or awesome, I start completing tasks at a maniacal pace. I figure that I won’t have “this much energy” for a while, so I have to get it all done right-this-very-second. After I over exert, my body feels like all twelve shades of cranky. I learned that in dealing with fibromyalgia, I have to start out slowly. It’s very hard for me to be patient enough to do that. It might be just as hard for you. We have to go at a slow turtle’s pace. When I started my aerobic exercise routine (working out for two minutes every other day for a whole month, then increasing the workout times by one minute until I got up to forty minutes), people thought I was…weird. “Why is she here for only a couple of minutes? She’s only here a couple of days a week. That’s lazy.” Every time I increased my exercise minutes, I felt better because there was less pain when I moved slowly. When I had less pain I stuck to the exercise routine even more, and I slowly increased my exercise minutes. The people who were doing an hour and a half of exercise and calling me lazy had burned out quickly. They started hurting after working out every day, and so they quit exercising. I love the way I look and feel! It took forever to get to my current fitness level, but I didn’t over exert, and I didn’t feel as much pain. It’s okay to go slower than everyone else; it doesn’t matter what others think about that. They aren’t a part of your self improvement.
9. Go easy on your soul– stop criticizing yourself.
If you had a friend that was going through a tough time, would you be nice to them? Of course you would. Yet it’s hard for any of us to have that same compassion for ourselves. We feel infuriated with our bodies because of what our bodies can no longer do. We feel angry in general but we probably can’t identify why, and then we make ourselves feel bad for being angry– we need to stop it. Accept every feeling you feel, no matter how taboo. Give yourself permission to feel things. Say something like, ” I, your name here, am now allowing myself to feel taboo emotion here.” Put all of your burdens in a journal. I have always benefited every time I wrote about the things I was thinking, things that I felt too embarrassed to say to other people. I have been able to think of solutions to my challenges, without feeling burdened by the fear of being forced to do what is “socially acceptable.” In my journal, I have the freedom to love and hate, to be calm and throw a temper tantrum, and to find the humor in really awful things, things I “shouldn’t” be laughing at. Give yourself permission to laugh at the inappropriate things. Give yourself permission to do all of these things in your own special way. Once you laugh, heal, and improve, you won’t have time to criticize yourself. You deserve to have some fun– go out and make it happen!
Take care, and enjoy your new life!