No one wakes up one morning and says, I’m going to be living the rest of my life in agonizing pain, unbelievable fatigue, spending thousands of dollars on diagnosing, treatments and lifestyle changes, as well as living in deep depression and a completely unpredictable life, and is ok with it. Yet this is the reality that thousands of people around the world are now living with every day. As we all know there are countless treatments available from medicine to physical therapies and many non-traditional routes.
Some sufferers of this beast have been lucky enough to have found some therapies that have been successful or beneficial to helping them lead a somewhat “normal” life. Some have had some up and down success and marginal improvement. And then there are “the rest of us.” It seems like any and all treatments have been tried with not even a slight hint of relief. No matter what category of treatment success, or lack thereof, the life we once lived is no longer what it once was. So where do we go from here?
At this point no one knows what causes fibromyalgia, therefore successful treatment options are few and far between. The things that are out there now are not a sure thing for successful symptom management. Out of all the unpredictable things that sufferers of this condition see on a daily basis, there is one constant, life continues. What that life is is something very different for everyone. Everyone is at a different point in their journey both mentally and physically. They say there are 6 stages of fibromyalgia but I think in reality there are many more. The exact number depends on the person, the number of symptoms, and they type of life we are living.
There is a a coping mechanism, if that’s what you want to call it, called Radical Acceptance. I had never heard of this until my therapist brought it up to me. Yes, I was seeing a therapist at one point as many of you also have or are still seeing one, as part of the pain management part of my journey. When he said that I should be trying to “practice” this I had no idea what this entailed and so began yet another step in trying to “help myself” and move on.
Essentially what radical acceptance is is a concept where you have to come to a point where you know your circumstances are not going to change, you are in a difficult situation but you have to learn to accept what your life is now and figure out a way to cope and have as positive a life as we can give ourselves. Now that may not be a very technical definition of what radical acceptance really is but this is my understanding of what it is, how to apply this and move on is a whole different thing and something I am still working on.
Fibromyalgia affects every part of our lives and to try to align our bodies and minds to reach a level of being able to function to some degree of harmony is a difficult task. Many of our journeys are similar in a lot of ways but also drastically different so what works for one, may not work for another but at some point we need to get as close to a whole person as we can.
So let’s start with the mental piece because this can affect the entire outcome. For most of us, an actual diagnosis was many years in the making. We know the story, vague symptoms begin to show up and thus the process begins. When the actual diagnosis is finally given many of us didn’t know how to react. For some it was a weight lifted off our shoulders, a sort of justification that this was not all in our heads. For others, it felt like a death sentence, doomed to a life we would never wish on our worst enemies. And for yet more, a starting point, a challenge to fix as much of it as we can. No matter what spectrum we fell on, we can all agree that our mental health took a hit, for some already struggling with mental health, this likely took it down several notches.
At this point everyone around us has an opinion, good, bad, or ugly on how to deal with this mental burden. And I’m not going to be that person who tells anyone how to deal with this. What I will say is that we had to come to a point of deciding the best way to help our mind and hearts. Whether it’s medication, talk therapy, or our own brand of therapy, we need to do take care of our mental health before we can take care of our physical health. It’s a starting point. It’s accepting that we need to take care ourselves mentally.
Physical well-being is a unique challenge as well. Now I could probably write a book on the obstacles of working on this part of it as many of you can as well. So let’s leave it as it’s a very long process of trying more medications than you can count, dealing with side effects you never knew existed, and more hurry up and wait than you’ve ever experienced. But honestly you need to do whatever you can do to make yourself feel better. We’ve all heard and read about the importance or exercising or moving a little each day.
Now I understand that and have been trying to get myself on track with that as well but many of us also suffer a flare up, increased pain or spasms when exercising too. So then what? It’s learning to accept what our limitations are and developing a routine around them and do what works for us individually.
Putting mind and body together will forever be a challenge and a daily struggle. We all have those days when our minds are sharp, fresh, and full of ambition but our bodies are betraying us. Then we have those days where we wake up and feel ok physically and feel like it will be a rare “good day” so we want to get on top of things and be productive but our mind is deeply foggy and putting a sentence together becomes a chore.
There is no good answer to dealing with either situation so you do the best you can. So here we are, this new reality we are living. The reality of knowing no two days will be the same. A reality where we now live life one day at a time. We can’t push ourselves mentally or physically because we know the consequences, we need to find that balance, to radically accept what our life will be and try to learn to be ok with it.
We need to learn to be gentle with ourselves, to not let the guilt of our limits get in the way of enjoying the good days. With some work we can learn to accept this new reality that is our life now.
For Discussions and Support join the group “Living with fibromyalgia and Chronic illness”