In order to shed some light on just how hard this decision is, I have decided to share with you what it is like to have to make the decision to take medicine or not. I have two parts of this post already and I will follow up with future parts as I progress in this decision.
Difficult Decision Part I (written over a few days of thinking about taking new medication)
I was struggling a few weeks ago over taking new medicine. I eventually came to terms with the fact that I have to take medication and took what was given to me. However, I just got worse and worse. I saw my doctor again last week, and he prescribed another new medication for me. When I got home and read about it, I just couldn't make myself take it.
This is a new class of drugs for me, with side effects that are significantly more risky. The probability of getting one particular side effect increases the longer you take the drug, and it is not always reversible. I could end up with permanent tardive dyskinesia, which is uncontrollable movements of the face, mouth, and other parts of the body.
A new warning from the FDA just came out this month about the serious risk of anaphylactic shock with this medicine. There is also the risk of NMS, which is a potentially fatal side effect.
With the other medicines I have taken, I knew that if I had a side effect, I could stop taking the medicine, and it would go away. This new class of drugs has side effects that are not so simple.
Frankly, at this point, I am not willing to take such a drug. These side effects sound too risky to me. No doctor, no matter how amazing, can predict what side effects and how safe any medication is for an individual.
Maybe I am too crazy to know what is best, but I see no way in which it is safe for me to take this medicine. I do not understand how medicines like this are even ok for people like me. I have not ended up in jail or in the hospital due to my illness. Were I close to death because of this, I might consider taking it. Instead I am miserable and barely able to function, but I still do anyway. This will get slightly better sometime and I will go back to gain a bit more ability to function, but at least I won't die or be stuck with facial ticks because of medication.
Maybe it is because I have been sick for so long that I have gotten used to knowing I will always be miserable. I know miserable. I know the hell of bipolar, but I don't know these medications and the side effects that could happen.
Is it worth it to take such a risky medication when no medicine has worked so far? I risk my life for the likelihood that the medicine won't work. That does not seem reasonable to me.
Difficult Decision Part II (written the next day)
I took a lot of time to think today about how my illness affects others around me; my husband, son, parents, friends, work. I can see how the current severity of my illness is making my son more sad and concerned. I see how my husband and Dad truly worry that if I continue to get worse, I will kill myself. I know many of the lifestyle changes I need to make to be stable, yet I am so sick right now that I can not do them.
I have spent my whole life sick with times where I was more stable, but never had a day without my moods going up and down.
But my husband asked me today, "What if this works?"
If it works, I could wake up in the morning and not hate my life. I could spend as much time with my son as I want.
I could get things done more efficiently. My family could stop worrying about loosing me either from suicide or packing up and leaving them. I could maintain all of the other things that help with bipolar and be very stable, not just stable enough to get by.
So, I will try the medicine for the first time tonight. I admit, I am scared. However, I have been scared before and that has not stopped me from fighting for my life and what I love.
The decision to take medicine does not end the day you start taking it. I will need to see if it helps, monitor any side effects, and get regular blood levels taken. The decision is ongoing and never easy.
I hope this gives you a glimpse into how hard this is for many of us, and not a decision we make lightly.
I would like to hear how other people have made decisions over whether or not to take medication. What helps you decide?