Orginalny
This varies per person as well as if they have type 1 or 2 (the constant pain or shocks). Since it can also be bilateral it depends on the branches affected yet this easy- fear. Fear is the worst symptom.
Since the most intense flare ups are episodic and stimulated by almost every aspect of living it's living in a constant state of fear. The shocks that come in these back to back intense episodes makes kidney stones and child birth seem like a hang nail. This disease can take your life. If you let it.
"the suicide disease."
Everyone newly diagnosed will hear that. The reality is that this disease does take ones life. It is a new normal.
Wind will hurt. Brushing your teeth will hurt. Snow will hurt. Noise will hurt. Touch, kissing are not in this new life. Not today if those are your triggers.
Pain is naturally considered the 'worst symptom' but that is simply not accurate. It's the state of fear knowing that anything could cause a flare. Or that nothing could. That it just hits and seems like it will never end.
Lack of understanding from friends, coworkers, doctors is a pretty terrible part of it. Bad advice about 'migraine medicine' will come. That must be a new normal.
Pain, fear, anxiety and developing and entirely new reality are the realistic worst symptoms of this disease.
Find your triggers as fast as you can so not every single aspect of your life is taken.
The thing about this disease is if the diagnosis is new it's not time to worry about what if a new trigger occurs. It's not time to worry about what it it gets worse. If in remission it's not time to worry about the next flare up.
This disease will let you be lazy. It will do the work for you and it's own time. It will show up and do it's job whenever it wants. You do not have to be paralyzed by fear about what's next because the only way to not give your life to it is to stay in the now.
It's cheesy but true. If the now is a level 10 flare up it's not time to focus on when it stops. It's time to learn tools.
The pain is Hell. That is reality. If you are reading this because you just got diagnosed then take a moment and applaud yourself. You are actually handling the worst pain known to man. Doesn't matter how. You are.
From one TN warrior to another- looking at the "what ifs" makes it "the suicide disease."
The pain isn't avoidable. Your triggers may not be. The fear is a choice every single day we can choose to live in or not.
TN doesn't give us many choices but the ability to respond to any situation is a choice we all have that not even TN can take.