Today is only the second day in several weeks that I really feel like myself. You see, back in December I went to a Neurologist about my IIH. She suggested a try a drug called Topamax, Primarily used for seizures and migraine prevention, it could also have some of the same effects as the Diamox I was on in 2013 - decreasing the amount of spinal fluid my body is producing. As an added bonus, it has a side effect for some of facilitating weight loss. With IIH, they suggest you lose weight, though it doesn't work for everyone (nothing seems to work for everyone - it's kind of a mystery condition).
When she gave me the prescription, she told me about some side effects - she said sometimes it made people feel aggravated or like they were unable to think clearly. Because I have been without meds for over a year with seemingly no ill effect to my health, and the condition is easily monitored by regular eye doctor visits, she said that if I experienced adverse effects it was fine to just quit taking it.
I don't know why I even decided to try it. I think the allure of the idea of something helping me to lose weight was attractive to me. Which... honestly, I don't even know if I care that much about it at this point, and my mindset has changed a lot, and well... that's a whole other blog post. I picked up the prescription and began taking it at 25 mg a day, with a goal of taking around 4 weeks to work up to the full dose of 200 mg that were prescribed.
The knee pain started almost immediately. My left knee has bothered me on and off, and I had joint pain pretty bad when I was on Diamox, my knees and wrists were always the worst. The other side effects though... they sneaked up on my over time. I didn't see them coming until suddenly, last week I was just completely overwhelmed.
Last Wednesday, I was so exhausted driving home from work that I almost fell asleep. When I got home, I got my kids dinner and then I cried. For two hours. I took myself out of the living room and into the bathroom, and I just cried. For no reason, about nothing in particular. I felt like I was going crazy. Was is possible that this was a side effect of the medication? It was absolutely possible, and it was the case. The side effects aren't the most common, but they can happen. This one time, I experienced some of those "in rare cases..."
On Thursday I got pulled over, and cried for almost 40 minutes afterwards even though I only got a $25 ticket and the officer was the nicest officer I have ever been pulled over by. Thursday evening, I started really thinking about it. Here I was, experiencing fatigue so intense that that night I went to bed at 9 with my kids and the next morning when we were 20 minutes early to Danny's preschool I took a nap in the car while he played games on my phone. My knee was in constant pain, and my other joints, especially my shoulders, were starting to hurt as well. I was short of breath, foggy-headed, and generally my body didn't feel good. My happy, shiny self? The one I have grown, nurtured, and gotten used to over the last year? She was gone. Instead I had fear, frustration, anger, loneliness, sadness. When I wasn't feeling one of those things, I just felt flat.
I realized it was insane to keep taking this medication. I realized that nothing was worth feeling the way I was feeling. Here's the thing I realized. The things I was feeling were all things I had felt before. In the really bad times, when I was depressed, when I lost my way and lost my hope, this is how I felt. Tired, sad, and with no motivation and nothing worth looking forward to. I felt BAD about feeling this way - I knew it was temporary. I knew that the pills were making me feel this way, and that I would be able to stop it. But it didn't make it easier, and it didn't change how I felt in those moments. Whether it was fear or intuition, I knew that giving it time to see if the effects would subside was not the right choice.
I am lucky that this time, it was just a side effect. This is what people with mental illness often struggle with. They may know that they are sick, that their body chemistry is off, or that there is are a reason for their feelings. But it doesn't make it any easier to be feeling those things, and it doesn't necessarily allow you to change them. I've been there. I've gotten help. I've been lucky. Not everyone is.
I have been on a fair amount of prescription drugs, and have never had psychiatric side effects before. It was intense. It was strange because I consciously thought that it was scary. I wasn't SCARED, but the idea that this was actually happening, that something was altering me so greatly and making me feel so terrible, it really is kind of scary. The days between last Thursday, when I decided to stop taking the pills, and yesterday morning, were really long and really difficult. I was desperate to be back to normal. On Sunday I sat by the water and cried some more, feeling like a mess and hoping that it would be over soon. I spent time with someone who always brings me back to myself and reminds me who I am, and the clouds started to part, just a bit.
And now, here I am. Yesterday morning I woke up and finally felt like myself again. I didn't realize how bad it was until the fog cleared. I'm still having some lingering effects, dizzy spells, and my appetite is funky. That could take a little while to clear.
One of the worst parts is that now I am seeing the effects in my children. Both Sam and Danny have always been really connected to me, physically and emotionally. And because I was so messed up last week, I either wasn't seeing it or I was just ignoring it because it was really all I could do just to get through every day. This week, I'm suffering the consequences.
Me being messed up really messed with my kids, and I think that's what hurts most of all. I'm sure they don't consciously know why they're having a hard time, but I know that last week may have been subconsciously scary for both of them. I was different. I had a short temper. Maybe I was acting more like I used to back when I was very sad and things were not great in our lives. I don't know. But Danny has been having trouble going to sleep and Sam told me that today was the worst day he's ever had at school, and then I found a note in his backpack about a think time that I really think should have warranted a phone call home, and both my little dudes spent a good portion of the night just... messes.
They raged, they cried, they hurt, their little hearts were aching. Did they know why? Maybe. I'm sure it's way beyond Danny to know that he probably didn't actually scream and cry for a half hour about a melted ice cream sandwich because the only thing wrong in his life right now is a melted ice cream sandwich. They screamed at each other, they yelled at me, they cried.
I knew I needed to write tonight because I feel bad about all of this - I feel so bad about subjecting them to the me that I was last week. I have to let go of that guilt, and move forward. I had to get it out, so here it is. I hope that in some way all of the turmoil tonight let them get something out that they needed to get out. I hope that tomorrow is a better day, and that I will be better for them. I hope that I will be able to show them enough love and security so that they will look back on these times and remember laughter and love instead of the days like today when everything was just a mess.