Do you ever feel like you’re in a haze? Almost like you’re disconnected from life? I’ve felt that way lately, and I’m starting to wonder if it has anything to do with my lack of Narcolepsy (N) medicine...
I’ll pause to say that today I’m taking a break from the usual crafty post to talk N. On occasion, I write these “The Narc Side” posts, which are meant to discuss different aspects of having N. If you aren’t sure what this disease is about, you can read more about it in my first Narc Side post, here.
Okay, back to my hazy happenings.
To take medicine or not to take medicine? This is today’s question. N causes you to fall asleep and suffer from severe daytime sleepiness. There are drugs to counter this. Strong drugs. Speed, in essence. They work, but not without a price. I took these drugs for five years and just recently called it quits. I quit when I found out I was pregnant, because you can’t be on them while pregnant, and even though I have since lost the baby, I have yet to get back on them. It’s been almost seven months since being off the meds. At first I was shocked at how easy it was. I’ve heard that on rare occasions pregnancy will counter the N symptoms. Perhaps that is what was happening. But I can now feel it catching up to me. Enter the haze.
I’m torn. Do I take the meds or don’t I? At work we’re fans of Pros & Cons lists. It helps us come to decisions we can feel good about. Maybe that’s what I need here.
- It keeps me awake.
- I have more energy to get things done.
- I have a much easier time getting the words from my brain to my mouth.
- I’m more upbeat and have more pep.
- It gives me some control over my life. (Since I’ve stopped taking it, I’ve gained a substantial amount of weight and my house is a worse mess than usual, all because I have very little energy, especially after a day of work.)
- It’s super expensive ($400 out of pocket each month).
- It gives me daily headaches.
- I can’t help but wonder if it had something to do with my miscarriage. (I took it for six weeks before I knew I was pregnant.) If I want to get pregnant again in the future, and I do, I don’t want that anywhere near my system.
- It’s a HUGE pain in the neck to get--lots of approvals and hoops to jump through since it’s a controlled substance.
- Did I mention it was hella expensive?
Bleck. Both lists make good points. There isn’t a real runaway winner here.
Why am I writing all of this in a blog? I honestly don’t know.
Maybe I’m seeking the perfect answer, though I know that’s next to impossible to give. Of course, advice is always nice, with or without that perfect answer.
Perhaps misery loves company and I’m hoping someone will come along and say, “Hey, I know how you feel. I have dilemma X and it sucks.” (Though I don’t wish dilemma X on anyone.)
This post could just be my way of processing some of the crap that’s in my head right now. Some of the stuff I have to think about but SO don’t want to. Maybe I’ll just drop the meds and pretend to be normal and everything will be okay. Yeah, that’s not really working out for me.
I hope it’s not because I’m seeking a pity party, because I absolutely know that there are so many things worse than N. At least I have the option to take medicine. At least I have a disease that I can live with and function with (for the most part).
I can’t explain why I’m sharing this. I just know that I was driving home from work today, blasting a little Def Leopard, and I started to cry. LAME! Who cries to Def Leopard? “Pour Some Sugar on Me” isn’t exactly a song that tugs at the heartstrings. When I explored that and the reasons behind my tears, my absolute and complete exhaustion came to mind. People cry when they’re tired, and I’m beyond tired. Does this mean it’s time to start taking the meds again? Will that help clear the haze? Heck if I know...
can I just say that this blog post is such a perfect example of why I love you. You are one of the most geniune, self-effacing people I know. I'm sorry you're stuck between this rock and a hard place and wish I could offer you an answer, but of course I can't. Except to say trust yourself. I know you will make the right decision for your life. In the meantime you have all my compassion.
I feel for you. Not in a pity party kind of way. I don't see it like that. I see you as a very intelligent woman who knows that talking about your problems can be helpful. By you talking about it, you may help someone who is going through the same thing as you.
What other options do you have?
Are there other medications?
I have a conically ill (grown)child and I know how frustrating it is making decisions on how much and when to treat with medications.
Talk to your medical doctor about how you are feeling. Perhaps you should also seek some counseling.
We all need help at one time or another.
If you aren't planning on trying to get pregnant for awhile, perhaps you could go back on the meds long enough to feel a bit of normalcy again. You can go off of them a couple of months before you try again.
I am worried about you and want you to know that there are many many people who care about you. I wish you didn't have to go through all of this.
Be strong and like Susan said, trust yourself. You are an amazing woman and you have lots of friends here if you need some shoulders to cry on. ;)
Awwww! I have no advice, but I just wanted to let you know that I'm thinking of you and praying for you. :-)
While I can't relate completely, I can say that I made a choice not to medicate and instead to use natural forms to help my body (eatig right, working out, vitamins) and I am glad I didn't go the other route. Now when I am feeling myself get the winter blues I get up and get active. Good luck-it's never an easy choice :0)
Sooo I've been staring at this leave your comment box for about 10 mins cause I'm not sure what u should do. It's not an easy choice to make. But what I can say is simple and I'm sure you've heard tons of times "Follow your heart, it knows best".
Megan your awesome, and no matter what decision you make it will be the right one for YOU.
Giant hugs! I don't really have any advice for you, just wanted to let you know that I'm sending hugs your way.
It sounds like the $$ is the real issue here. I am not sure why women feel guilty spending money on just themselves, but we do.
You think for a minute, if it was Cory who needed the prescription to feel "normal." Would you do it? Is he worth it?
Well, sister YOU are too.
Someone once said, with some medical things, it is like wearing glasses.
You can't pray, exercise, or eat better, and expect your vision to go back to 20/20!
Some things are just broken, and need to be fixed with outside help.
You are worth it.
When the time comes, I would discuss your medication with an OB/GYN. I am sure they have has experience with what you are taking.
And keep in mind, healthy babies are born everyday to people on worse things than what you are taking.
Make your decision, and don't look back. :)
I live in a similar world for different reasons. I find that when I come to the same question, I choose with my heart and for my family. I love that you shared your personal story. I try to talk to people about mine and they look at me like I am a freak. But I share on my blog and it helps me. I look at the positive that maybe someday I can help others that may be suffering to.
Sorry to hear about your problems with narcolepsy. I'm wondering something.... have you ever given up sugar? Something that happens to me is that when I eat sugar, I literally fall asleep afterward (1/2 hour or so). I can't keep my eyes open. Very dangerous when driving! Since I gave sugar up (and carbs), I no longer have that feeling during the day.
hey meg - something i've actually been dealing with this month as well. that feeling of wanting to be "normal" and if we forget about it, or ignore it, it will go away. no true. the truth of it is that you and i have rare nuerological disorders that won't just "go away" it doesn't matter if we lose 100 pounds, eat perfectly whole foods, pray, sleep, keep routines exercise wonderfully drink tea, meditate, laugh, have sex, don't have sex, get massages, acupuncture etc. etc. etc.!!!
this is why we're "strange friends" we can understand each other's lives like no other. what we have is part of us and our lives. we need to accept that and live our lives to the fullest and the best way possible in order to fully enjoy every bit of it we have. when properly medicated, looked after and knowledged about our syndromes, our limits and lack of limits, we are at our BEST!
my neurologist gave me a great thought the other day... the point of managing our lives is really "risk management." for me, the risks that i would encounter if roy & i chose to have a child naturally is not worth the possibility of me not being here or even getting mildly hurt through the process. the risk of travelling to a remote destination with no access to western medicine is something i will always have to be aware of in my travels.
however, this is all ok to me, because, what i can do is more than what i can't do... i may never go 90 mph down the highway on a motorcycle, skydive, zipline in a remote rainforest or go through child birth BUT i'll tell ya what I can do... travel great speeds on the orient express, fly first class to anywhere that has a close hospital near by just in case, hike through yellowstone, love a child that wouldn't have a chance with love or life if roy & i didn't share ours with it and sooo sooo sooo much more.
we are slightly limited my friend, but our restrictions allow us to greatly appreciate all that is truly wonderful to us and enjoy sooo much more what others may take for granted. our doctors, sure want to get paid, but be sure you have the right ones and you know the quality of life you will encounter when you properly take care of and nurture your "narc" is better than not doing so.
i love you dearly and want to love you forever. take care of yourself and make you the #1 priority, without that, nothing else can be. you can't leave me my friend, stay awake. xxooxxooxxooxxoo
This post touched my heart. I will pray you find the answers you are seeking. Congrats on 5 years too!
Hi Megan. I came by your blog and look what I found. And I didn't even realize you were going through this. My answer would be to just sleep at the office all day and have me do all your projects for you, but that probably isn't a good long term plan. So I say medicate! Because it will help you be the best you you can be. And none of us like gaining weight which can lead to other problems. And none of us like being tired which can lead to tons of health problems. Medication has changed my life and it doesn't matter what it costs. As far as baby making goes - talk to your OBGYN and see what the risks are. If it was a healthy pregnancy, using a drug in the first six weeks wouldn't cause you to miscarry - you should be fine going off it as soon as you find out. Ok, I wish you luck, lots of prayers and lots of hugs - see you sooooon (and DON'T fall asleep on me!!!) hahaha
So often, cruising blogs, one gets the feeling that everyone else's life is all roses (or insert seasonally appropriate decor) and great photo ops. Nothing like the world I inhabit... Your post, on the other hand, is very real, immediate, and emotional. And therefore compelling. Thank you for your honesty and willingness to share.
Your dilemma stinks. My only advice is to not make a decision based on money. Money is merely a reflection of your priorities.
I've wrestled with anxiety and depression issues and know that when I find myself crying over something like Def Leppard, it's time to tackle the problem, usually through meds but not always. Only you can decide what's right for you right now. It's not a forever decision; it's a right now and only now decision.
Best of luck and warm thoughts sent your way. Thanks again for being real.
Hugs Megan. I'm praying for you as you make this difficult decision.
awwww, megan. i'm so sorry that you're going through this. i'm thinking the same thing as a lot of the other's. sure, it's a lot of $$$. but if it helps, than it's worth it. and it does sound like it did quite a bit of good for you. sometimes, we just have things that we can't fix on our own. and some meds help. my issues are that i can't sleep. so i take something for that. just something that i have to do. and i would also suggest just talking to your OBGYN, about the baby stuff. they know all about that, and what you would have to do when the time comes. good luck with your decision :)
Hugs to you!! I don't have N but I do have a bacteria in my lungs (there to stay) and a disease of my bronchia (there to stay) and I do know the drug routine. I have always been an "Iron Horse type of person all of my life" and now to be like I am is so very frustrating and depressing and I hate taking the drugs. The one that I take takes me on a roller coaster of emotions everytime and you honestly think you are losing it. Have started a diary on my computer to help me remember from each episode to the next what the nutty symtoms from the drugs are doing to me. That way I have something to hang onto when I feel "is this right". I too had a miscarriage (5 months) many years ago and I cannot imagine having to weigh the effects of drugs to help you versus what it could do to harm your chances of a baby again. Life can sometimes really throw you a curve, but prayer and putting your trust in God always comes through. I know that you will find your answers and God will bless your life.
So glad that you can share your life with us. Had really missed your blogs for sometime.
first time on your blog, was checking out the AWSOME WREATH! I saw the word medicine and had to read what you wrote! I am on SOOOOO many meds myself. I HAVETO take meds to sleep and meds to wake up! I really do know how it feels! I have LYME Disease which causes my VERY BAD FATIGUE, as well as VERY BAD INSOMNIA! How can a person have both? I don't know. Is there mabe a diferent medicine you can take rather than the one you are on now? I recently HADTO switch my "wake up medicine" because it was just not enough, I didn't want to raise the dose of what I was on, just needed to try something else. It is covered by insurance also! There are SOOOOO many meds for this and not all are so expensive and have fewer side effects regarding pregnancy. Well, I pray this helps! It's been a while since the post so you likely have done something by now. Just wanted to let you know I'm in the same, seemingly sinking, boat. Lol
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