To live on a solitary journey with fibromyalgia
By: Dr Alexa James
A Life Not Fully Lived
A lonely journey can be fibromyalgia and chronic pain. Although it is a lonely journey even if you are surrounded by many people. It’s warm and inviting when you’re “your people.” But yet, you try your best not to give your discomfort and pain away. You feel your pain and struggle when you are alone and you know that you are always going to live it. If you feel’ ok, ‘ even if you don’t know you should push your limits.
You feel the pain and the fight and you don’t know what to do if you feel bad. You have never seen anyone before when you meet yourself, your heart runs joyfully but in panic. You’re glad to see them, but, “How are you? You get the question. “The correct words to say can’t be found. “Where are you working? where are you working? “Or,” How are you working? “Words fail you once more.
You don’t want to give your hand a tip, you won’t admit it’s not all right. Naturally they want to know why if you tell someone you don’t work. However, without a long explanation request, how can you answer that? And without further questions, answers?! How do you make anybody realize that? I want to work, but I don’t agree with my body. My body doesn’t say it!
But, tomorrow, the deeper problem is, I could feel “OK” enough to try to take part in life. My life could be manageable tomorrow. So, on manageable days, what do I do? I might try to “catch it up” on those rare occasions. I’ll try to catch up with things I’ve put on the back burner, because my body said nothing! But tomorrow will catch up with me when I “catch up.” For at least a few days, I’ll inevitably’ pay’ for it. I want to live my life! I want to live my life! I want to work! I want to work! My life and my family I want to enjoy!
But it’s affecting my life and my family. You are suffering from pain, you are suffering from fatigue and your physical limitations are affected. Fibromyalgia and chronic pain affect them. This condition, which nobody has the answer, is now my life. My life is all about tiredness and pain. Now my life is about my physical limitations. In every day, I will try to find simple joys.
I’ll keep trying to celebrate the small victories which everyone else may think are small. The fight I can’t win will continue. I will. The purest, most honest and most hardcore person I can be, I will continue to try to be myself. Perhaps my body will abandon but God will never give up my spirit!
Life as you know suddenly takes a new turn when you are diagnosed with a chronic disease. You fight to accept it first and then try to learn how to live with it. So many things will change in your life, things that you once did without a second thought require you to draw energy from a pool that doesn’t exist.
Plans now “depend on the day” and how you feel. Now you have to wait for anything you have every intention to do. Your body will never be the same, and your mental health will certainly be affected. You will enter and leave depressed mental conditions, guilt and sense of meaninglessness.
There are five stages of grievance, most of us have some or all of these stages of chronic pain. One day my therapist informed me of the possibility of a person being diagnosed with a condition such as this, and hence also the stages of grief.
But I’m going to address that in another article. But what about a person who has a chronic disease, could they learn anything? Here are a number of things that can teach us about a chronic disease or chronic pain.
From the day we suspected that something was wrong physically with us, we had to start looking for a physician that we could trust to help us find answers. This is not an easy task, as we all know and experienced. Many times, chronic doctors will see several doctors before finding a doctor who takes us seriously and will help us get some answers, or at least a direction to get started.
“There is a virtue of patience,” well, that is not truth. We all know well that this is not going to happen, as much as we want immediate answers. We therefore need to learn the lesson from the Tortoise and the Hare, the race will win slowly and steadily, well, perhaps it won’t win anything other than that. Patience will lead to a better understanding and understanding of what life will be like now for us and those we love. We must be patient with ourselves, most importantly.
Once we know this chronic condition, we can begin to understand how it affects our lives. Things in our lives will change and what our limitations are now to learn and understand. We have to understand how this affects our families and those we are close to, and not just us. It is important to understand a broader view of what lies ahead.
And above all, it will be different to understand that life as we knew, and we need to understand that it is “New Normal” and we need to find out what life will be and learn to live this “New Normal.”
When finally diagnosed we are full of fear, sadness, anger, and many other emotions, including relief. Finally, somebody gave us a reply as to why we feel how we do it. Once we learn to accept this and learn how to adjust to this new life, we will learn how to adapt.
There is no time to learn this acceptance piece, but once we have reached it, we can start to move on and learn how this new life goes, accept our’ new normal’ and start again.
It was a good day every day. Well, there are few good days and far from it. If / when they come, we really have to enjoy the “good days” and appreciate little things that make us smile every day. However, consider “understanding” part of this is that, because it will cost you afterwards, you don’t want to overdo anything on a good day.
It is priceless to appreciate the time you can spend with your family and enjoy all the activities you can do. Enjoy your hobbies and activities to keep your mind from your pain. You can still. Enjoy what you have against what you have lost.
It is not because those of us with chronic pain, chronic condition, don’t know or feel any kind of love before this diagnosis, but now, or should I say, we have a different level of love. You have the profundity of love and caring, because it’s said with no judgement, if someone you really love and care about, can look into your eyes, if your worst is, and say “I understand and wish I could help you.”
There is not a certain number of things that someone can learn during this “new life,” but we can continue to look for good or positive things. It’s much easier said than done, and it’s sure a process, and trust me, I still try every day to find it. Some days are certainly easier for me to find peace or positiveness, but if I find it, I will continue to search for it and enjoy.
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