Feeling A Little Lost

I don't know if I'm the only one who has these feelings, however, it may just be a symptom of the illness.

I went to see my family practitioner the other day to do some blood work (glucose, cholesterol, etc.) and she heard some wheezing in my lungs. I wasn't even going to mention to her that I had a pain in my back, so when she told me this, a little light bulb went off. She put me on a Zpack and did an EKG. I started feeling better after the 2nd dose of antibiotic.

Sometimes, I don't even realize I am sick because of the narcolepsy and fatigue. These symptoms are such a part of my life that I don't notice other things about my body. The whole circumstance left me feeling a little lost.

I started to get that ol' feelin' of the blues again and I DON'T want to go there again. I guess I am just feeling melancholy.

Luckily, the nurse called the next day to tell me my glucose levels went down (although I am still considered pre-diabetic by the numbers), my cholesterol and vital signs are all good. So, I want to know -- am I crazy for feeling down in the dumps or is it because I have a respiratory infection or is it just a symptom of narcolepsy (in general) to feel low sometimes?

My brain started conjuring up all these terrible scenarios before I could process the good news.

I am ever-vigilant in pushing back any strong emotions for fear of a cataplexy attack. So, I guess not letting out your emotions can make you feel down in the dumps.

If anyone else ever feels like this, let me know. I know I should cut myself a break, but I feel so limited that this "feeling a little lost" thing is hovering over me like a black cloud and I am having trouble shaking it off. Know what I mean?

Well, tomorrow's another day. I will try to wake up with a new attitude and positive outlook. Wish me luck. Thanks!

Hey hold your head up, I too have days where I feel like I’m walking around in a cloud, but it’s all apart of the disease I have good days and bad days. I take the good and the bad and I keep pressing on. I do think you need to talk to your doctor and let them know about how your feeling because narcoleptics do tend to develop depression, not saying that’s what’s going on with you but it is very important that we let our sleep doctors know all of our symptoms in order to get the best treatment plan. I’m praying for you that you start to have more good days.


Yes, there are times I feel that way, yes there are times I don't recognize the other things going on, yes there are some days feeling "some what down".

We have a unique illness, I wish it was named "something else" :) "gifted with sleep" or "hyper creativity". Naecolepsy sounds like "Howls at the Moon". The reason I say that is (I'm single) and I feel when I mention "narcolepsy" it seems like "run for the hills time for them". Maybe, it's just my impression but the disease name and the fact so little is known by the general public about narcolepsy. It's awkward and at times discouraging. We are unique with this illness. Then there is the question "how are you doing today? Whimsically I'd like to pull out a deck of cards and say "pick one" then we will both know....LOL I'm trying to look on the lighter side.

Most importantly what Punkin says is so true we must take the good with the bad and Keep pressing on! Focusing more on anything and everything positive. I think this is an on going process, continually day by day. It feels like at least to me, we have to deal with "a push and pull kind of thing" recognizing our emotions and current state. The respond to them in a reasonable positive way the best that we can pushing away the bad and pulling in the good. This is easy to say but at time difficult. I think we are like Sailing Ships, constant adjustments to stay on course because the winds are ever changing. Your compasses are what you know helps you to deal with things, your spouse if you have one, your family, your real friends, your doctor and the nice folks here that you can honestly express yourself and be fully understood.

Sound like you have a good doctor :) I also have to deal with keeping my blood sugar down by diet, walking, food choices, supplements etc. Last night I read a report by Dr. Carol Johnson professor of nutrition at Arizona State University. That 2 tablespoons of Apple Cider Vinegar with a meal can lower insulin resistance. But that is just what I read, please do your own research.

Yes again to what Punkin says regarding depression, we need to be watchful. I think most people have a down day here and there. But I think it's important to watch for trends and changes. (Another area of supportive spousal help).

My day started at the blood lab because I called my doctor and told her that I thought my thyroid levels were way off. Hum, she wanted to test before I made any changes. This has been a rough winter for me, lack of sun light and great fatigue...

Most Importantly Thank you for Sharing with us because it helps us think about what you share, offer advice and it also helps us do a self check on how we are doing. Hopefully there are good things going both ways!

May the sun shine on you today! I pray that you do find a sunny day and some good things!


PS: A book suggested for me to read was "The Courage To Feel" by Andrew Seubert (A Practical Guide to the Power and Freedom of Emotional Honesty) I'm a "book guy", read it and found it to be helpful understanding the role of emotions, some great information not covered in any other book I've read. He covers ttechnique's to better understand and responds to our different emotions. For what it is worth.

My cognitive is starting to melt :)

Dear Ranger and Punkin -- Thank you both for responding to my post with honesty and good advice. I guess I am not alone in feeling this way at times. Today started off pretty good and the sun is shining. Everything is starting to look and feel differently and I understand that what I need is sunshine and exercise and a good positive attitude. Thank you both for reminding me of that. The support you get here is priceless. I wouldn't trade it for the world. Thanks again, guys! You made my day.

I totally relate - if my energy level is low I immediately assume it’s an “off” day due to living with narcolepsy. Recently when I realized I caught a bug that was going around that made everyone who had it fatigued for a couple weeks, I was so relieved because I initially thought my meds weren’t working anymore.
I’m also a mental health counselor, so I want to advise against pushing your feelings down. Emotions are like waves and we can only hold them back so long until they break down our jetties when we least want them too. Especially with a chronic illness, it’s important that we express how we feel. In the case of those of us with cataplexy, we better make sure we’re sitting down, lol. I’m sorry to laugh but I find this situation we’re in rather absurd and can’t help but laugh sometimes.
Do you ever journal or use art to express your feelings in a safe way? It can help, the feelings need to get out to keep the seas of our life calm.

Dear Laura, Thank you for your response. Yes -- I have several creative outlets that make me feel alive and better about myself. The emotion thing -- that's another story. I have learned to express myself without yelling or blaming, however, my middle son is trying everyone's patience with a recent bi-polar episode that forced me to express my anger and frustration at his behaviors and actions. I had several cataplexy episodes this weekend. It is what it is. He has an appt today for counseling. I am hoping it goes well and he gets a good psychiatrist.

Oh, that’s a whole different picture…best wishes to your son and for your family that he finds and utilizes the supports to manage his symptoms effectively. I can completely understand why you’ve been wrestling with your cataplexy recently.

…and makes sense, it seems normal that you’d feel down in the dumps due to respiratory illness, son’s manifestations of illness and narcolepsy in the background. When I get blue I tell myself that this too shall pass; it helps me.

Dear Laura, I appreciate your responses and advice. Sometimes it's helpful to just write it all down and get it off my chest. My outlook is much better today. I know I have been through this before and will get through it again. I just felt a little down about it all. But, better days are ahead -- I'm sure of this. Thank you, Kathleen