For those of us who suffer from Fibromyalgia or Chronic Pain, our days are dictated by pain, muscle stiffness, fatigue, and many other factors and symptoms. Sometimes we even have to go as far as planning a rest day, depending on what our plans end up being. What people who don’t suffer with these conditions struggle to understand is that some days we can be productive, participate in activities and to some degree, enjoy fun activities, but some days, we can’t do anything, and getting out of bed or showering may be the biggest accomplishment we have for the day. Some people don’t understand that not only do we live a life based on day to day, but also, sometimes hour to hour. And yet, this is our lives, what happens from one day to the next is not guaranteed, things may not always be planned and days are always uncertain. However, no matter what, if it’s an “ok” day, I’m going to try to enjoy it, and I’ll be damned if I’m going to apologize for it.
That may sound a bit harsh, but there is a reality to our “new existence” that not everyone can understand. There are days where living with fibro and chronic pain is the biggest challenge we face. Our days and nights are filled with pain and sleeplessness, missed plans, friends who no longer exist, not being able to work, and just the plain misinformation, lack of understanding, or ignorance from healthcare professionals, and we are no longer living a life we want, we deal with this every day. However, there will be days when the magic pain scale number falls to a number that we can actually tolerate, though we may not feel fully rested, we do feel like we are able to participate in the day and a door opens with opportunities to enjoy life, if at least for a day or a few hours.
When we are having a day, or days, that we are able to possibly enjoy family or friends, much needed and enjoyable activities, or even go on a vacation, we need to do just that. We need to embrace the days when we can participate in life. Now, unfortunately with those days of actually participating in life, and trying to get the most out of a tolerable day, come the inevitable feelings of guilt and physical suffering that is always there if we push ourselves too hard. We sometimes feel guilty that for as much of life as we have missed, we are now able to enjoy one or two days of trying to live. For instance, today I had to miss a family get together because I was just not able to handle it physically or mentally. Now, tomorrow, I might be seen having lunch with friends or enjoying a vacation with family, but yet there is sense of guilt, I feel so guilty that I had to say no yesterday, but today, I can say yes.
If there is one thing that is certain about fibromyalgia and chronic pain it’s this, there is absolutely nothing that is predictable! We can’t always plan anything ahead of time or commit to anything so this is why we need to enjoy the days we can. With the age of social media, we can share these accomplishments and joys with the touch of a button. People can see the things we were able to enjoy and engage in. We want to share the joy we were able to experience because we were having an ok day. But along with that, we feel the judgement, the voices behind our backs and the questions of what we actually experience in this life of fibro and chronic pain because someone just saw us out and about, smiling, living, enjoying the moment. They won’t see the tears tomorrow when we are wrapped in heating pads or ice bags, they won’t see the pain on our face when we need to get up and walk up the stairs, and, they won’t see us suffering. But we still allow ourselves to feel guilty because people got to see us happy and today, we had to say no to yet another family get together.
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With the mountain of guilt we are feeling because everyone can see that we were able to have some fun, we have to keep something in mind, it’s a snapshot. What people see of us out and enjoying ourselves is, just a small portion of our life, a snapshot that shows we were ok, if just for a little while. A snapshot of a chance for us to enjoy an activity with our family. A snapshot of the fact that for just a little bit of time, we were able to exist as close to normal as we will ever come. A chance to enjoy an activity, or at the very least, some quality time with our family or loved ones. What that snapshot does not show is the suffering we experience every other day, the pain that is keeping us bedridden, the fatigue that has washed over us and stamped out any chance to accomplish anything. We don’t share those times, we don’t post our struggles on social media, we don’t want people to see those parts of our lives.
For as limited a life as we are able to live, we need to truly enjoy the times we can actually live, and enjoy living them. So why do we let ourselves feel guilty for enjoying these times? It’s a hard question to answer because for some of us who are suffering with chronic pain and fibromyalgia, we have found that we are no longer able to work and we are no longer able to help provide for our family. This is a struggle in and of itself we don’t need to add to our mental suffering by feeling we don’t have to the right to go out with family or friends or the right to enjoy ourselves when we are feeling some semblance of being human.
We DO have the right to enjoy as much of life as we can without apologizing or feeling guilty about the fact that maybe yesterday, we couldn’t even get out of bed. We suffer everyday with physical or mental pain, struggles that cannot be seen by anyone, only felt by us, so, again, why shouldn’t we be able to enjoy activities, vacations, nights out, dinners with friends, without feeling guilty about it? We need to embrace these rare opportunities and enjoy the hell out of every minute we are able to not think about our pain and struggles. Enjoy the days where even though the pain may not be gone, it is at a level that we can smile without forcing it on. Grab a hold of every opportunity you are able to, for just a little while, forget what your new existence is. We must stop feeling the guilt we experience whenever we are able to have a good day. I won’t continue to apologize to anyone for being able to enjoy some of the “ok” days, because I certainly struggle on the other days!
These are things and feelings that anyone who does not suffer the pain of fibromyalgia or chronic pain will ever be able to understand. And truly, how would they since they have never been in our shoes. Fibromyalgia is truly a condition that when we say, “I’d never wish this on my worst enemy”, we mean it! We are not looking for sympathy or pity, we just want a little understanding that our lives are different because we have to live “around” chronic pain. We have to enjoy things as they come and enjoy life on the days we are truly able to live it.
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