Knowing you should not work but knowing you don’t have control

Sometimes acceptance is understanding there will be pain. There always will be pain and acknowledging that. Fitting your life in there anyway and limiting your suffering as best you can.

But not exceeding your pain limits. Not exceeding your capacity to cope. Not ‘pushing through the pain..’ Not survival mode, because one should never live in survival mode… it isn’t meant to be that way.

I wish doctors, specialists and psychologists would comprehend this one thing. That we can ‘maintain’ under certain conditions. It isn’t easy but we can manage with the right coping strategies. But some of us can’t under other conditions such as working on top of all the pain. I myself have tried working since I got out of university. University itself became very difficult. But working has never worked for me. I had problems from the get-go. I was told I could not work one job by a doc due to how severe the migraines responded to shift work. On another, I went on medical leave and they refused to let me work a consistent shift so I found something else. The last job I worked there for ten years… with 6 short-term leaves of absence and one long-term leave. Clearly, I was not functioning the entire time. But each and every time their goal was to get me back to work. Because that is what they do. They think that will help me. Instead, it puts me back in the same place I have a problem with. Pushing through the pain. survival mode. Desperately waiting on a year waiting list hoping the neuro will be able to do Something… and broken when he does not. A person gets pretty tired of this. Pretty hopeless. No one seems to grasp the point. That I cannot work with this much pain. But that I seem to maintain decently when I am off… well it takes about six months after I stop working to adjust and work a consistent program to maintain. I get daily migraines both ways, fewer status migraines, more sleep, less stress and being able to cope with the suffering the pain causes, able to do less if I cannot function, do a little more on a good day.

I just don’t think we should be punished for not being able to work. I understand these limitations. I have come to terms with it. Took tow suicide attempts but I get it… I can’t work. However, I have no power in this decision. It is the others, who do not see things the same way… the doctors, the pain specialists, the neuros. Sometimes I think they are pain per return to work patient they get they are so eager to push for it. Not to mention the precious insurance companies who are ready to kick you off for random made up reason.


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