I am not thinking of the fatigue. That is kind of like BEING tired. I guess I AM tired of the fatigue, but that is not what I originally had in mind.
I'm tired of having myelofibrosis every day, day after day. There are never any myelofibrosis holidays where you can leave it on the clothes tree and forget it for 24 hours. So today it is making me grumpy.
I am tired of the threat of myelofibrosis. It is like the bully at school. Some days he ignores you and other days he just steals your lunch money. But there is the constant threat that he is someday going to beat you up! You know it is going to happen and there is not a thing you can do about it.
I am tired of the obscurity of myelofibrosis. It couldn't be simple - no! You have to explain it all the time. Nobody knows what it is. "Yes it is a cancer - kind of a chronic leukemia." "It is turning my bone marrow to fiber so I will eventually not make any blood." "We don't really know how fast it will progress."
I'm tired of the people who have a home remedy they want me to try. Marijuana, mega vitamin C, turmeric, special diets and so on... They all claim that their approach is working for them, but they are all on very different things. What it proves is that a chronic disease with fluctuating symptoms is the perfect laboratory to demonstrate how confirmation bias works.
I am tired of dealing with doctor's offices and hospitals and pharmacies and labs and insurance companies month after month. I am blessed to have good coverage and I don't have any complaints about the people I deal with. But the process is a drain.
I am tired of losing friends to this miserable disease. Some I know pretty well. Others not so well. One way or another, myelofibrosis kills far too many of them and we are left to send our condolences. (Until I had myelofibrosis I never realized how limited English is for expressing sorrow.)
These are the realities of having a chronic - but deadly - disease like myelofibrosis. You can't forget it. It intrudes into your life everyday. It is not going away.
This is a marathon... not a sprint.
I'm tired of having myelofibrosis every day, day after day. There are never any myelofibrosis holidays where you can leave it on the clothes tree and forget it for 24 hours. So today it is making me grumpy.
I am tired of the threat of myelofibrosis. It is like the bully at school. Some days he ignores you and other days he just steals your lunch money. But there is the constant threat that he is someday going to beat you up! You know it is going to happen and there is not a thing you can do about it.
I am tired of the obscurity of myelofibrosis. It couldn't be simple - no! You have to explain it all the time. Nobody knows what it is. "Yes it is a cancer - kind of a chronic leukemia." "It is turning my bone marrow to fiber so I will eventually not make any blood." "We don't really know how fast it will progress."
I'm tired of the people who have a home remedy they want me to try. Marijuana, mega vitamin C, turmeric, special diets and so on... They all claim that their approach is working for them, but they are all on very different things. What it proves is that a chronic disease with fluctuating symptoms is the perfect laboratory to demonstrate how confirmation bias works.
I am tired of dealing with doctor's offices and hospitals and pharmacies and labs and insurance companies month after month. I am blessed to have good coverage and I don't have any complaints about the people I deal with. But the process is a drain.
I am tired of losing friends to this miserable disease. Some I know pretty well. Others not so well. One way or another, myelofibrosis kills far too many of them and we are left to send our condolences. (Until I had myelofibrosis I never realized how limited English is for expressing sorrow.)
These are the realities of having a chronic - but deadly - disease like myelofibrosis. You can't forget it. It intrudes into your life everyday. It is not going away.
This is a marathon... not a sprint.
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