I’m not going to excuse myself for “OK” days
By: Dr Alexa James
Our days are dictated by pain, tight muscles, fatigue and many other factors and symptoms for the patient who suffers from fibromyalgia or Chronic Pain. Sometimes we have to go so far as to plan a relaxing day, as far as our plans are concerned. What people who don’t have difficulties to understand with these conditions is how we can be productive some days, take part, enjoy fun activities, but some days we can do nothing, and getting out of bed or showering might be the greatest achievement for the day. Some people don’t realize that we live a daily life but, sometimes, hour by hour. However, this is our lives, it is not guaranteed what happens from day to day, things may not always be planned and the days are always uncertain. Nevertheless, regardless of what, if it’s an “ok” day, I will try to enjoy it and if I can apologize for it, I will be damned.
This may sound a bit harsh, but our “new existence” is a reality not understandable by all. There are some days where the major challenge we face is living with fibroid and chronic pain. We’re full of pain and sleeplessness our day and nights, lost plans, friends who don’t exist anymore or who can’t work and just the simple disinformation, the lack of understanding and ignorance from medical professionals. But there are days when we can actually tolerate the magic pain scale, even though we may not be completely restful, and the door opens with the opportunity of living, if for at least one day or for some hours. There are many days in which we can take part.
We need to do that just when we have a day, or days, that we can possibly enjoy family or friends, much necessary and pleasant activities or even go on holiday. We must spend the days in which we can take part in life. But now the inevitable feelings of guilt and physical sorrow come, that are always there if we push ourself too hard, with those days of actually taking part in life and trying to get the most out of a tolerable day. We sometimes feel guilty that we can now enjoy living for a day or two for as much as we have lost. Today, for example, I had to miss a family because I couldn’t handle it physically or mentally. I might be seeing myself having lunch with friends tomorrow or having a holiday with my family, but I feel guilty and guilty that yesterday I had to say no, but I can say yes today.
There is absolutely nothing to predict if there is one thing that can be certain about fibromyalgia and chronic pain. We cannot always plan or commit ourselves to anything in advance, so that’s why we have to take advantage of the days. We can communicate these achievements and joys by touching a button with the age of the social media. People can see and participate in the things we could enjoy. We want to share the joy we had because we had an all right day. But we feel the judgment, the voices behind our back and what we actually feel in this life of fibrous and chronic pain because someone only saw us, smiled, lived and enjoyed this moment. They won’t walk in heating pads or ice bags tomorrow when they do not see the tears, if we have to get up and go up on the stairs and do not see us suffering. They’re going to see the tears on our faces tomorrow. But let us still feel guilty because people were happy to see us and today, we had to say no to another family.
We feel like we’re in the mountain of guilt because all can see that we could have fun, we must remember, it’s a picture. It is only a small part of our life that people see and enjoy from us, a picture that shows we were OK, if just for a while. A snapshot of an opportunity to enjoy our family activity. A snapshot of the fact that we could exist as closely as we would ever be for a little bit of time. An opportunity to have a good time with our families or loved ones, for an activity or at least. What this picture doesn’t show is the sorrow we experience every day, the pain which keeps us couched, the tiredness that has wiped over us and stamped out every opportunity for something to happen. We don’t want people to see these parts of our lives. We don’t share the times, we don’t post our struggles on social media.
For as limited a life as we can live, we really need to enjoy and enjoy the times we can live. So why are we guilty of having enjoyed this time? It’s a difficult question to answer because we found that we can’t work anymore for some of us with chronic pain and fibromyalgia, and that we can’t help our family. This is a fight in itself, and by feeling that we do not have the right to go out with family or friends, or the right to enjoy ourselves when we feel like we are human beings, we do not need to add to my mental sufferings.
We DO have the right to live as much as possible without apologizing or guilty that we may not get out of bed yesterday. We suffer from physical or mind pain every day, fighting that nobody can see, feeling just about us, so why should we not be able to enjoy activities, holidays, nights with friends, dinners without being guilty of it? We have to take advantage of these unique opportunities, and we can’t think about our pain and struggles in every minute. Enjoy the days when even if the pain doesn’t go away, we can smile at a level without force. Take every chance to forget what your New Existence is, just for a little while. Whenever we can have a good day, we must stop feeling the fault we experience won’t keep apologizing for having some “ok” days, because I’m sure I fight on the other days! These are things and feelings that anyone with fibromyalgia or chronic pain cannot ever understand. And how would they really be since they were never in our shoes? The condition that we say, “I would never wish this to my worst enemy” is that we mean fibromyalgia! We don’t seek sympathy or mercy, we just want to understand a bit that our lives differ, because we have chronic pain to live “always.” We must enjoy things as they come and live on the days when we can truly live them.
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