What to say when you findout you are dealing with more?

Ok :slight_smile: just saw my doctor for my narcolepsy. So first let me say I’m still over achieving :wink: on the other side from what she was saying and from her body language. I’m slowly progressing where I’m dealing with more. Like the partial Catpletic episode’s and migraines. So, we are trying no-doz and taking naps. I know I should take naps. But I don’t want to sleep in the day… I have done that for year’s. So, right now I feel mad, sad And like ok if I most I most. I know it will be ok and we will find the way to handle this too :slight_smile: just sometimes the reality of narcolepsy hits me.

So what did you mean by her body language? Like she said you were overachieving?

If it makes you feel any better at all, my husband AND best friends have both said that they think I am letting my diagnosis give me this jaded view of what I can and can't do. Like my hubby decided that we should train for a 10k, despite the fact that we haven't ran or walked in about a year and 1/2. I told him maybe I should ask the doctor about it, because I don't want to do something that's going to mess up this good balance I have going with work. That is, work is AWESOME and I'm happy, and I feel like I've got a good schedule figured out. I'm scared to take on something like training for a 10k because what if it upsets the good balance I feel like I have? He thinks that is insane and me using the diagnosis as a crutch. I've only had the CONFIRMED diagnosis for a few weeks. I still feel scared and unsure and like a giant hot mess. His making me feel like I'm not doing ENOUGH isn't helping.

So anyway, I guess what I'm trying to say is GO YOU! How awesome that you haven't let it pull you down... if you have to slow down a little, maybe that's just because you were AMAZING for a little longer than you should have, because you're JUST THAT GOOD. :)

What I mean by her body language. Is she seems really impressed but worried at the same time.

Let’s see if I can help you :slight_smile:
Ok. We all have a different view when we find out about having narcolepsy. It’s the confirmation that we didn’t know we where looking for. I understand finding the routine that help’s the most and you are happy in. It help’s :slight_smile: but with that said I found that if I get into such a routine. When I need to do something different in my day or someone new starts working at my job. I would start to get very nervous and start shutting down. So, now if I notice to much of a routine. I slowly make myself do at lest one thing different. Music help’s and getting someone to make me smile. It is good to check with your doctor about the 10k. If that is something you want to do. That way you have a better idae on things you should keep in mind. I think it’s awesome :slight_smile: if you are able to do a 10k :slight_smile: I would say find the fact’s for you, don’t over think it and trust your self :slight_smile: I have had my diagnosis for almost a year. And I’m still a hot mess :slight_smile: cause new things come up. Ok starting to go in a circle :slight_smile: just want you to know you can do what you put your mind to :slight_smile: just have to find the way that work’s and that you are safe in :slight_smile: you are awesome! Remember you have narcolepsy… But it is not what makes you “you”

((((((( huge hugs ))))))))) Thank you for that, Rachel. I think it just means so much to have people that GET IT in my life. Like you, like this group, like other groups on FB. My friends all think it's just made up, which makes me sooooo appreciate people like YOU.

It’s definitely not made up. If it was think we all would make up something else :slight_smile: unfortunately some people don’t truly understand the battle with in. I hope your friends someday will learn to be there for you. ((Hugs)) I agree it is awesome to have people that know how you feel and what you are going through. :slight_smile:

Everyone has to find out what works for them. In the summer I barely sleep. I start my day with an hour workout at the gym, work an 8 hour day, then I go back to the gym for another 90 minutes. That is what works for me. During the winter I just need to work more. I deal with narcolepsy with sleep paralysis and hallucinations, plus cataplexy. I have severe allergies, chronic sinusitis, asthma and Tourette's. But I do all I can to function as normally as I can. I have felt tired and sleepiness almost my entire life, but I do what I can realizing my limitations. It has been 6 years since my diagnosis, but 30 years trying to find the answer. Just hang in there.

I completely understand what you are going through. Sometimes I forget I have narcolepsy, then it acts up as if saying "yo I'm still here". It is difficult but knowing that other people are going through the same thing helped me a lot

"Just sometimes the reality of narcolepsy hits me." Ain't that the truth! Sometimes it hits like a brick. We will make it through! Sometimes I feel invigorated after taking a mile or 2 walk, we need to stay healthy and eat right. However, I also know after my walk, I am going to need a nap and allow that too. I hope you see butterflies today, they always make me smile and I hope you do too!

:slight_smile: I love to walk. When I am doing good and the weather is not crazy. We go out on the nature trails. It’s a time to just let things go.

The reality of narcolepsy hit when I was told I may never be able to drive. Its just something you learn to live with.

I am sorry to hear that. I was never told that. My medication is regulated and I take regular naps. I have not had any episodes of falling asleep since Ive been regulated. From what I understand, if you are stable a year, you can drive again. I am not sure of the actual laws though.

Webbibear said:

The reality of narcolepsy hit when I was told I may never be able to drive. Its just something you learn to live with.

Re: (If it makes you feel any better at all, my husband AND best friends have both said that they think I am letting my diagnosis give me this jaded view of what I can and can't do.)

I heard this from someone very close to me....They just can't understand, they have to make up an excuse in their mind for what they can't understand.

It's not you :)

Best Wishes, go forward :)

Ranger



The HR Girl said:

So what did you mean by her body language? Like she said you were overachieving?

If it makes you feel any better at all, my husband AND best friends have both said that they think I am letting my diagnosis give me this jaded view of what I can and can't do. Like my hubby decided that we should train for a 10k, despite the fact that we haven't ran or walked in about a year and 1/2. I told him maybe I should ask the doctor about it, because I don't want to do something that's going to mess up this good balance I have going with work. That is, work is AWESOME and I'm happy, and I feel like I've got a good schedule figured out. I'm scared to take on something like training for a 10k because what if it upsets the good balance I feel like I have? He thinks that is insane and me using the diagnosis as a crutch. I've only had the CONFIRMED diagnosis for a few weeks. I still feel scared and unsure and like a giant hot mess. His making me feel like I'm not doing ENOUGH isn't helping.

So anyway, I guess what I'm trying to say is GO YOU! How awesome that you haven't let it pull you down... if you have to slow down a little, maybe that's just because you were AMAZING for a little longer than you should have, because you're JUST THAT GOOD. :)