Learning to Live, Not Just Survive, With Fibromyalgia
This past week was one of “those" weeks for me. I helped my son move out of his apartment — a feat that can be daunting for someone with fibromyalgia to say the least.
After a long day of pushing past the pain, fatigue, and dealing with time restraints, I said, “Why can’t things just be normal again? I want my life back!" I have been a fibro sufferer for 15 years now and the truth is, I won’t get my life back, nor will things go back to normal — at least not the old normal.
The good news is there is a new normal that has given me a new life and a new path — one that I am embracing for all it has to offer. Healthy or not, life is filled with change and once we embrace this truth with acceptance and anticipation of all that is ahead, we begin to see that there truly is life beyond any present struggles we might face.
So how do you go from saying, “I have fibromyalgia?" to feeling like yourself again? This is a question that each of us must answer, and this journey towards some sense of normalcy is a completely individual one.
Once you have found acceptance of your condition with full understanding that there is no cure, it is then time to bring more certainty into your life. It is time to take a look at all the things you are doing and to move beyond just management of your disease to truly living again and enjoying all that life has to offer you going forward.
Living a Balanced Life
For me, being diagnosed with fibromyalgia was not a curse, but ultimately ended up being a great blessing for me. No I do not like pain, nor am I a glutton for punishment. But truth be told, fibromyalgia saved me.
I was living on a fast track and pushing myself to the limit. I was doing the work of three people at my job and working as many as 90 hours a week, in addition to caring for my young son as a single parent. I was maintaining a home, working in my church and community, and helping family members when needed. I was like a runaway train.
In a matter of a few months the train came to a screeching halt. Pain has purpose; it is an indicator that something is not right and a warning signal that there is imminent danger ahead. It is a flashing light before us that warns us that we need to either switch tracks or get off the tracks altogether.
Putting Yourself First
You can live a full life with fibromyalgia, however! The key is to listen to your body and be flexible with your plans. With fibromyalgia, slowing down and doing less can ultimately allow you to do more.
This change in mindset, for me, was difficult. I had rarely put myself first and certainly had not developed the art of slowing down or doing less. My worth had been all wrapped up in productivity and how much I could accomplish.
Below are some steps towards self-care that will benefit you and everyone in your life:
- Keep your options open. When you get an invitation, tell the person you’re very interested, but you’d like to think about it and get back to them in 24 or 48 hours. This way you won’t feel so put on the spot.
- It’s OK to cancel. If you’ve scheduled something and you aren’t feeling well enough to do it, reschedule. Don’t beat yourself up if you can’t do something. Try to remember there will be other times you can do it.
- Keep a fibromyalgia journal. Recording your activities, meal times, sleeping schedule, and how you feel each day can help you identify what causes your symptoms to flare.
- Delegate. Negotiate with your spouse or family members to take over certain tasks when you can’t do them.
- Take a break. If you’ve been active on organizations or committees, consider taking a break for a period of time while you focus on taking care of yourself.
- Eat out or order in. Rather than having family or friends over for dinner or holidays, make reservations at a restaurant or order in.
- Plan activity during the hours you feel the best. For me, mornings are difficult so I find late afternoon and early evening a better option.
- Don’t be afraid to ask for help. People will usually go out of their way to help if you ask for it.
Once again, remember you are walking the “new normal" path so the way you learn to enjoy things you love again may be different. Also remember what we talked about in the beginning — the key is acceptance of the new you, and new way of life.
Finding and doing things you enjoy can make a big difference in your quality of life. Doing things that make you feel good emotionally can ultimately make you feel better physically. Things as simple as taking a warm bath, reading a book, or visiting with friends can lift your spirits.
Don’t allow your condition rob you of the joys of life! You know your body by now and what to do to compensate both in preparation of those times you choose to participate and afterwards as well.
Self-Talk
Here is a short list of things you can do to move from the victim mentality when it comes to your attitude towards fibromyalgia:
- Adjust your lifestyle
- Adjust your attitude
- Inspire others
- Be grateful
While we do not choose to have fibromyalgia — we do have a choice about how we live with it. Even if we still have pain and fatigue in varying degrees, we can grieve our losses and then focus on our many blessings.
I myself am truly grateful and have no regrets. Honestly, fibromyalgia has pushed me towards dreams and a life that I would have never slowed down to pursue otherwise. I love my new normal!