Some realities about fibromyalgia and chronic fatigue syndrome:
- We don't know the cause
- We don't have a cure
- There's no universally effective treatment
- We'll likely have to live with some symptoms for the rest of our lives
- In order to feel better, we may have to give up some things we care about
Those are hard realities to accept. If you're like me and you've always had a "nothing can stop me" kind of attitude, it's especially hard. Many of us were raised to believe that we can (and more importantly, should) have a career, family, spotless home, bustling social life, etc. I know I fought hard to keep my life from changing. I eventually had to admit that I'd not only lost the fight, I'd lost my quality of life. I couldn't do my job up to my standards, I couldn't take care of my kids, my house - or even myself, I'd given up my social life and favorite pastimes, I simply struggled through my work day and came home to collapse and try to recover.
Two-and-a-half years later, I'm mostly functional, in only mild to moderate pain most days, have lots of quality time with my kids, my house is ... well, better than it used to be, and I have a fulfilling job that I love. How did I get here from there? It's taken a lot of baby steps, but the first step was accepting reality: I couldn't keep charging ahead as if I was perfectly healthy - I had to adapt to my illness if I wanted to have any kind of life at all.
I know how hard it is to get to that point of acceptance, and the questions that go along with it: Am I facing reality or giving up? Am I taking control of my life or letting my illness control me? What realities do I need to accept in order to move forward?
- Get help answering those questions for yourself: Acceptance for Living With Fibromyalgia
Are you battling with acceptance? Have you improved after accepting reality? What helped? Share your experiences by leaving a comment below!
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I think that for some ways, finding that balance is a little easier for me because I’ve had fibro and cfs for almost as long as I can remember. It started at 10, about the time I hit puberty.
I do remember going through a lot of the struggles you’re talking about while I was in college. I didn’t understand why I couldn’t do all the things the other kids were doing, but I knew that I just couldn’t.
It would be another almost 20 years beyond then before I’d get an actual diagnosis. For me, it was a great day, because I finally had something that I could tell people when they didn’t understand why I couldn’t do everything they did. At that point, I could finally let go and stop trying to be like everyone else and just be like me.
You do have to let go of some things. Other things, you have to find new ways to do. You have to make adjustments. It doesn’t mean giving up on life, it just means living the life that you have, rather than what you think you should have.
Perhaps the reason they don’t know what these illnesses are is because the medical arena is not looking in the right place for the cause (just treating the symptoms, which of course, draws more $$$).
Some with “FMS/CFS” will actually have Lyme Disease, Chairi Malformation, A-typical MS or other illness that are causing the ’symptoms’…Gulf War Illness wasn’t real either until Dr. Garth Nicholson found out what caused it (as his daughter returned from GW with this and passed it to family members). However, before anything was down for our military personnal, those responsible had to accept acocuntability. It’s thought that same L-form bacteria and pathogens are those found in many cases of FMS/CFS. So, it does seem to be something that can be treated more effectively, but the testing isn’t being done that is required to rule out other possible causes (who checks for Lyme with a Western Blot and who does pathogen testing), nor are there many places or physicians available who are familiar with how to treat these illnesses. Of course, Lyme Disease is hardly treatable after the first few months…but the viral/pathogenic/bacterial causes underlying most of these illnesses can be treated.
I honestly believe they ‘choose’ not to.
I just spent a great deal of time making a post that did not go through…so i’ll just leave a short one this time.
One needs to check into the pathogens, bacteria and viral issues that are involved with any type of CFS/FMS. Dr. Garth Nicholson has researched this and has answers.
Adrienne, I fought hard at first to keep my old life, too. When I did accept it, my husband thought I was giving in and left me after 29 years of marriage. There are so many effects of this disease on us, mentally, physically, socially and in relationships, it’s hard to say which is worse. The pain, fatigue and fibro fog that has also robbed me of reading books…or losing people in your life that just don’t get it.
I fought hard in the beginning, first to get some one to believe me, then to get a diagnosis, then to recieve the medications that would help my symptoms. I fought the idea that this was permanent. When it didn’t go away I sank into depression. I finally pulled myself out. It took me a long time to come to terms with the reality that my life would never be the same.
It is now fifteen years later. I realize now that if I want something close to my old life I must face things in a more measured way and at a slower, easier pace. I listen to my body and try not to overdo things. I still have pain, but I take care of it immediately rather than letting it get away from me. – I am no martyr. On occasion I suffer from flare-ups that keep me immobilized until they pass away. I have gotten used to it, or at least I don’t try to beat myself up over it. I take care of myself. Thanks to being on a good regime of meds. I lead a full life with a few glitches here and there. I do continue to educate myself about FM/CF so I can keep up with the latest information.
Marcella, Your comment made so much sense to me. I think I’ve been walking the line between depression and trying to learn to adapt. I haven’t had my diagnosis for long. It is good to hear from people who struggled but are learning to adapt.
Marcella, Your comment made so much sense to me. I think I’ve been walking the line between depression and trying to learn to adapt. I haven’t had my diagnosis for long. It is good to hear from people who struggled but are learning to adapt.
I was just diagnosed with fibromyalgia recently, and I can’t tell you how relieved I was. I’ve struggled with the symptoms my entire life, but how many doctors will take a child seriously when she says something hurts and nothing shows up in diagnostic tests? I’ve had so many mysterious aches and pains over the years that most doctors, friends, and family members simply labled me a hypochondriac. I went through life oscillating between two thoughts: (1) this isn’t normal and something is seriously wrong with me, or (2) this is normal and everyone else just deals with it better.
Finding out that “this isn’t normal” but I’m not dying of some mysterious illness was a HUGE relief. And it freed me – at least a little – from the guilt that had plagued me for years. Here I am, a seemingly healthy, intelligent college graduate, and I can’t seem to “make anything” of myself. Employers would wonder why I was barely able to drag myself into work in the morning only to crash by 3:00 in the afternoon, “No, I haven’t been partying… yes, I’ve been going to bed at a decent hour… yes, I’ve been trying to eat a healthy diet…” After getting married, my husband would wonder why I could clean the house from top to bottom one week, and barely be able to get off the couch the next.
Finding out that my pain is real and my fatigue isn’t my fault was a relief. I don’t have an “old life” to long for, but I still have a lot of people expecting me to behave like a normal, healthy 25 year-old. Thankfully, I do have the support of several good friend and an AMAZING husband who will make me french toast on my bad days
) The biggest breakthrough for me: allowing myself to feel really good about the small things I accomplish.
I have been diagnosed for about 3 yrs. However, I have had symptoms for years longer than that. I have spent my adult life trying to do everything that society says a woman should do. I have four children have tried to be the “perfect Mom.” I also had to go to work and work full time as the only support the children for several years between my divorce and remarriage. I also while working full time went to school and earned an AS degree. All this time I have pushed myself as I really didn’t have energy to do all these things. This winter, I finally realized that all my life consisted of was working, everything else took a back seat, as I didn’t have the energy to do other things. I decided to quit work. I am sure that my boss was glad in some ways as I know that I wasn’t able to give her my best. I was absent, I came in late, and left early and used up all my vacation and sick time and still needed time off. anyway I am still trying to accept reality. I have and think I have, but some days are still difficult.
I’ve had FM for yrs but have only lived with the diagnosis for three. My apartment is a mess, I can’t cook regularly for my husband, our sex life is almost non-existent. That is just a few things I’ve had to deal with. I’ve given up cross stitching as well as reading, & I’m fighting the realization that I’m probably going to have to give up crocheting.
I don’t know how to accept FM & move on as best I can. I can’t let go of the fact that I need to have a clean apt.
I don’t know how to let go of the guilt of not being the wife I used to be. Knowing that you, Adrienne, have reached acceptance gives me some kind of hope that I too will get there someday.