It is extremely important for patients to respect their illness, learn their individual symptoms and try to identify what triggers each symptom for them.
While we all have many things in common with this disease, our triggers and even symptoms can be vastly different from one person to the next. For example, I can have wheat and (dark) chocolate but not corn, soy or dairy (to name just a few food triggers) while my son, who also has MCAS, can have wheat and corn but not chocolate, soy or dairy.
Regardless of what our triggers are, it is vital that we do our best to stay away from them at all cost:
..it is vitally important for patients to avoid triggering mast cell degranulation to both lessen their suffering, and preserve their quality and length of life.
That’s right, our life span can be shortened when our mast cell disease is not kept in check. This means trying to work out every possible trigger we have which can be an overwhelming prospect. Yet I can’t stress the importance of this!
Again, from the Mastocytosis Society page:
Mast cell disorders are neoplastic disorders, which means the mast cells multiply continuously over the patient’s lifetime. As with cancer cells, mast cells do not die, disappear, or cease to function, on their own. Unlike cancer cells, mast cells are normally good cells. But it’s a case of having too much of a good thing. That can be just as damaging and life threatening as a malignancy. Every time a patient encounters a trigger, they risk their mast cells multiplying in number. Too many mast cells will increase their suffering and eventually could potentially shorten their life span.
In case you’re new to mast cell disease, they explain what exactly happens when mast cells degranulate:
…when mast cells degranulate, they dump a host of chemicals at once, triggering the patient’s symptoms. These chemicals include histamine, heparin, prostaglandins, neutral proteases, acid hydrolases, chemokines and cytokines, just to name a few.
Yikes! To complicate things further, when we are in the throes of degranulation it is often difficult if not impossible to figure things out on our own. Why?
When the symptoms occur, it is common for patients to have difficulty thinking clearly, which restricts their ability to help themselves. Mast cells are in every organ including the brain. When symptoms occur, many patients experience problems speaking or articulating their needs, or even understanding what exactly is happening to them and what they need to do about it.
I can definitely relate to this. When I am degranulating badly I often say out loud “why is this happening?” and “why can’t I think straight?”. Even if I know just about everything there is to know about my disease when I’m sick it all goes out the window! This is why I spent last week wracking my brain trying to figure out what triggered me and it wasn’t until I was over the worst of it that I remembered it was probably my own estrogen. This is something I’ve known and been aware of for months!
So what can we do about it? How can we help ourselves to manage better?
By learning more about our disease it also helps us to better understand what’s happening even if we can’t recall specific things (like estrogen being a trigger) during the worst of it. Knowledge can help us prevent degranulation to begin with and that should always be the goal.
Learning not to beat ourselves up over accidentally exposing ourselves to triggers helps, too. There are only so many variables we can control despite our best intentions and it’s never going to be easy or perfect with this disease.
I know, I’m just now back to my “normal” and am fighting off the urge to blame and feel sorry for myself for losing yet another week to this mast cell madness.