I wish i had some answers for you but i am pretty much in a similar situation, the difference being i'm 41 not 24. I have spent the last 3 years dealing with chronic pain issues which i have found bad enough but now have the N thrown on top of everythng. I live alone with my 2 kids who i want to provide a better life for, but by the time i have them up and ready for school i am exhausted. I suddenly feel that life has passed me by and i missed out on all the opportunities because i was too busy doing other less important things. Even though i'm nearly 20 years older than you i want to go out and live life to the fullest as well and basically just have fun. Why is that so hard now??? It's very easy to focus on what we can't do anymore and very hard to find what we can do. I think thats it. Maybe we need to ask ourselves every day what CAN i do that makes me feel good....i'm guessing right now, like me, your sitting there saying "there is nothing". I know there is a lot of hype about positive thinking and how it improves our lives. Maybe this is a time where we are meant to concentrate on that. I have used it in the past to get me through difficult times and it does help...but it takes practice. Books such as "The Secret" and "You Can Heal your Life" are good starters if you haven't taken this direction before. They give you hope, which is what i think we all need. I wish i had answers for you and everyone else in similar situations. Bottom line is Never Give Up and Keep Searching for answers. Someone out there has to have them. :)

Don't lose hope. Dr. Mignot is close to finding a far safer treatment for narcolepsy.
I'm 25 years old, I have status cataplecticus. I only got diagnosed a month ago, but I've had narcolepsy with cataplexy since I was at least three years old. I know how crazy narcolepsy can be. If you need someone to talk to, email me at hyperlexiclinks@gmail.com and I'll give you my phone number. Or if you prefer we could communicate by email, or we could just talk here if you like. I am onlne frequently. (saraiah says I spend all night online). All right, it's past one in the morning, and I do need a little sleep, I'll probably be back on in a few hours.

I also have heart problems. Had a heart attack last year. Had a stent put in a year ago, and while the hope was that I would be less symptomatic, in fact I am now getting angina whereas I didn't have it before the stent. I have not only the constant sleepiness of N but now also the extreme fatigue from my cardiac problems.

Now, I'm quite a bit older than you, in fact I could be your grandmother, and I've had N w/C for 46 years. Of course one of the last things I should be taking is the high doses of Adderall that I'm on, but after discussing it with my doctors, we decided it was a quality of life issue.

I also have status cateplecticus which is a real pain in the butt. In the big picture of my life with N and C, the C only morphed to status cateplecticus in the last 7 years or so.

And, sleepystar, I know it just sucks being 24 and not be able to do what we all imagine age 24 should be. The truth is not one of us was given a guarantee that life would be easy, or take the path we envisioned for ourselves. I would think that every one of us here never dreamt that the path they are on even remotely resembles the path they thought their life would take.

It is tempting to go hide under a rock (I have a rock with my name on it that I visit on occasion), but to tell you the truth, it only makes us feel worse. For myself, I get up when my body tells me ok, I've had as much less than ideal sleep that I'm going to have for now. I make myself get out of bed, and literally turn right around and make my bed.

I then shuffle off to the bathroom, empty my bladder and there I will sit for who knows how long because I am just too tired/sleepy to move. I have fallen asleep sitting on the toilet. Have also fallen forward or to the side (into my bathttub) on occasion, but generally wake up and catch myself before I do much damage.

Sometimes, as I sit there, kind of bent over, head down, one of my cats (Maya, who apparently thinks I need company whenever I go to the bathroom) jumps up on my back. That wakes me up!

I force myself up, and get ready for the day, which has changed drastically over the years. Where once I wouldn't dream of coming out of my room without makeup, etc., I now basically throw my hair into a ponytail, forget the makeup entirely, brush my teeth, etc. and get dressed in whatever. (I take my meds before I actually get myself out of bed.)

I wander out into the living room or kitchen and do whatever because basically I'm in a fog. In other words, I'm totally useless. It isn't until my second dose of meds that I can even remotely function.

A long time ago I learned the phrase "Fake it til you make it." So I kind of fake that I'm awake and semi-productive. I just know that if I don't force myself out of bed, and do even the most basic little chore, or whatever, I would only feel much worse emotionally.

I've been on disability since 1993, so I don't work. But for the first 2 decades or so of having N, I functioned as a wife, mommy, and even worked as VP of a direct marketing firm. (I took a lot of naps behind the closed door of my office.) Now that seems like a lifetime ago and almost like it was happening to a different person.

Consider contacting a vocational rehab resource in your city or state. Let them help you explore what you might be able to do, given your limitations. Oftentimes they will pay for any training and supplies, or whatever you need. You may find you have to work out of your home, though if you can get out and work even part time, you'd probably feel a lot better emotionally.

If work is simply not an option, apply for disability. Of course you will get denied at first because that's what they do, hoping you'll give up and go away. That's when you get a disability lawyer, which won't cost you a dime.

In the meantime, find out what financial resources are available in your state. If you are severely depressed, get to a shrink and a therapist. Meds may help and therapy can benefit everyone.

Be your own best friend. Think about what you would suggest for your best friend. Take the best care of you that you can do. Trust me, I know it's hard. But don't let N have all the control. And don't let your heart have all the control. Do everything you can within your own personal parameters.

Surround yourself only with people who love and support you. If you need them to cheer you on emotionally, or help you go through the process of applying for disability, or whatever you need, don't be afraid to ask. Some may disappoint you, but you won't know unless you try.

Hang in there. You are not alone. We are here for you so reach out as much as possible.

MsKalinarcolepsy, I know what you mean about the kids. My kids are grown and I have grandchildren. I pictured myself as the grandma that would take the kids places, do fun things, buy them stuff and spoil them. That couldn't be further than how it has turned out. I love my kids and grandkids more than words can say and in my mind, I am letting them down. THEY don't think that, but it is how I feel. Heck, my younger grandkids absolutely drain me when they are around. I live on a very meager social security check, so I don't even have the fun of buying them special things.

I could do some things with them, if they would do them. But I've asked 2 of the younger ones (9 and 12) if they would want to play War (the card game) or something, and they look at me like I have 2 heads. They're into computer games, etc.

I do provide comic relief. My grandson (12) was here this weekend and we were doing something in the kitchen and an old song popped into my head and I just started singing it. I started out: "If you want to be happy for the rest of your life, never make a fancy woman your wife. So for my personal point of view, get an ugly girl to marry you." My grandson looked at me, astonished, and asked if that was a real song. I laughed and told him that yes, it sure was. I sang some more and he thought it was the funniest thing ever.

Well, to get back on track here - yes positive thinking can make a huge difference. Even when it feels impossible. There isn't a day that goes by, no matter how down I get, that I don't tell my service dog (we have lots of conversations) that we are SO lucky to have a roof over our heads, a car (albeit an old one) that gets us around, a bed we share, and some food in the fridge. There are a ton of people who don't even have the basics.

My son just returned from his 3rd deployment to Iraq. It drives him crazy to hear people complain about their lives and what they don't have or how hard it is. So, we really have to make a conscious decision to be grateful for what we do have, that I'm assuming that most of us have use of all of our limbs, and there are so many that have it so much worse. No, the path we are on is nothing like we imagined it would be, but it is OUR path. It isn't all dark and horrible. There are thorns, but look hard and see the roses. There are pot holes, so watch your step and walk around them. There are clouds, but look for the rainbows.

I'm really not a Pollyanna. Trust me. It's damn hard. It feels unfair. It pisses me off. But I cannot stay in that place for long. When I throw a pity party for myself I have yet to have anyone else who wants to attend it. So I shut that party down.

If there is anything that makes you laugh, be it a book, a movie, something, make use of it to pull you out of the darkness and take a step forward and know there are possibilities for you. Not the ones you dreamt about maybe, but they are there nonetheless.

Ok, I'll jump off my soap box now. Think I'll go love on my service dog, a beautiful Golden Retriever. She never has a bad day. She thinks life is a party.

Thank you so much for sharing everyone! I'm normally an optomistic type of person but everyone has their down days. I've started looking into disability and how to apply. I'm working on convincing my parents to allow me to have a dog, i do better when i have a companion and something to get up for on bad days but i'm not sure i can convince them of that, and that when i move out i worry that i wouldn't be able to take the dog with me to an apartment. I'm now trying to track my N and see if i can see a pattern when it comes to bad days. Thanks for helping me realize that i'm not alone. It truly means a lot

:)

If and when you decide that a dog would help, there are laws in place that can make it possible for someone to have what is called an 'emotion support' dog. These dogs are not considered service dogs, and have none of the public access service dogs have. However, the ADA has officially changed laws concerning service animals this year (updated from 1993) and they address this very issue.

Here is an excerpt from a release of information that came out recently:

Re: "legal obligation to permit the use of animals that do not qualify as service animals under the ADA, but whose presence nonetheless provides necessary emotional support to persons with disabilities. Accordingly, other Federal agency regulations, case law, and possibly State or local laws governing those situations may provide appropriately for increased access for animals other than service animals as defined under the ADA. Public officials, housing providers, and others who make decisions relating to animals in residential and transportation settings should consult the Federal, State, and local laws that apply in those areas (e.g., the FHAct regulations of HUD and the ACAA) and not rely on the ADA as a basis for reducing those obligations."

***********
Basically, you'd have to do your homework to find the exact FHAct regulations, as well as your state laws (assuming you live in the USA), but a landlord who does not allow pets, may be surprised to find they must allow you to have a dog if it falls under the parameters of those regulations.

If you should decide to get yourself a dog, do your homework on what breed would best suit your needs, as all dogs are not created equal. The worst thing anyone can do is to choose a dog for a pet or otherwise, strictly by their emotions, or because they spot a dog that is just too cute to pass up, etc. And you have to realize that a dog comes with responsibilities. Which actually is a good thing. It takes our minds off ourselves and we focus on them and their needs and our interaction with them. A dog should get obedience training and be extensively socialized so in the long run you don't end up living with a dog who is running the house and your life.

Ah, I'd better shut up because I could go on and on. I have learned so much over the 8 years with my service dog and see all the mistakes I made in the past. An obedient, socialized dog is simply a much nicer dog to live with and in your case, easier for a landlord to be accepting of the FHAct regulations.

Thanks for the info Arizonahugs. I'm going to start loooking into that. I know I'd probably get a golden retreiver. I've had 2 and they were both so sweet and gentle and calm. Thanks for all the advice!

WARNING: This will only interest those of you who are interested in Golden Retrievers, and/or may consider getting a service dog some day. More on service dogs at the end of this. Otherwise this will bore you to death.

Ah yes . . . Golden Retrievers. They are definitely in a class by themselves. But you don't know that until you have one of your own. Clearly I believe I own the most beautiful, smartest, most obedient, loving Golden Retriever who has ever graced the Earth. Yeah, I'm a teensy bit biased. However, on the occasions that I do get myself to the store or when I go to the doctor, it takes twice as long as normal because people constantly stop us to ooh and aah over my Olivia. I honestly didn't get it. I mean, I know she is very special, but how could these people know it simply by just looking at her.

I learned a couple of weeks ago, when her father passed away suddenly, that he too had this unique quality of acting like a magnet that attracted everyone to him. When our service dog organization ended his days of siring pups, he became the organization's ambassador in reaching out to get people to volunteer.

His 'mom' and I correspond and she has worked with lots of Goldens and they are indeed an incredible breed, so full of love of people, an innate desire to please us, so gentle, smart and empathetic. Yet she said there was just something extra special about Caesar (my Olivia's father). As we compared notes (and exchanged photos), it seemed as if Olivia is almost a clone of Caesar. They look exactly alike and have the same traits including this magnetism.

I have spoken at two of the Narcolepsy Network conferences letting pwn's know if their symptoms are severe enough (mainly the cataplexy), they could very well be eligible to get a service dog. And of course, Olivia was really the star of 'the show' spreading her Golden love everywhere.

That said, Goldens simply are special gifts from above. While I am approached by people all the time, when another Golden owner spots us, or someone who once had a Golden, they greet us like we are family. One day at the dog park there were 9 of us Golden owners there. Naturally we gravitated toward each other and the Goldens did the same thing. Almost like they knew 'Hey, we're family and we need to hang out."

If you're interested, you can read my article about how I came to be a service dog recipient at this link: http://www.talkaboutsleep.com/third_tier/patient_stories_narcolepsy_andrea.htm

The email address in that article is no longer valid, however.


If youd like to read an article on Caesar, check out this link:
http://neighbornewspapers.com/stories/Selfless-career-comes-to-close-for-beloved-dog,163675?content_source=&category_id=6&search_filter=&event_mode=&event_ts_from=&list_type=&order_by=&order_sort=&content_class=&

As a caveat, please know that especially with the new ADA laws regarding service dogs, what defines a service dog, and who is eligible, service dogs are not meant to baby sit your kids while you nap, keep you awake when you drive, awaken you from an unplanned nap, make your bed (well, they do help those with limited mobility pull the covers up), and so many things people have written me about. In a nutshell, Olivias role would be closest to that of a seizure RESPONSE dog (which is entirely different than a seizure ALERT dog). As my symptoms have progressed and memory problems and being in a confused state have become significant, when we are out walking, she can get me home when I am too foggy to know which street is ours (yes it has happened) and if I simply cannot keep my eyes open, I tell her to take us home and she instantly switches from a dog on a walk who sniffs every shrub and rock, to working dog who heads straight to our street, turns the corner and heads straight for our driveway to get her mom home.

Sleepystar, I cannot imagine a better choice for a best friend than a Golden Retriever. I wish you much luck.

Azhugs, I loved the articles! I've had 2 goldens in my life thus far and while they were completely different they were both amazing. The One, Cheyenne, would actually check on me whenever I was sick. She would nudge me every hour or two till I would respond. She was my baby.

I do truly believe that having a dog whether or not it's a service dog would be so helpful for me. I dont think I would qualify for a service dog. I do have C but it's not severe right now. At least it's not unless what happened the other night was C and I just didnt realize it. I was out with a friend of mine and while we were sitting at a restaurant I started getting shakes in my arms and legs to the point my voice was quivering. It didn't last long about 4-5 minutes.

My heart does do a lot better when there's that unconditional comfort that a k9 companion offers. I think that's because my anxiety is kept level and even my stress levels are lowered which has a major impact with my heart. Any type of stress will cause my heart rate to race uncontrollably to the point of pain. There have been a few instances where I've nearly past out which is terrifying.

I've already started looking into applying for disability. I'm not completely sure what to do with the service dog part though..

You've been a big help thank you!