Hello every one! I am new to this site, and am having trouble contacting any one, Over the holidays, my Narcolepsy attacks happened frequently, and a few paralysis episodes. I have been in bed the last few days due to loss of motivation, energy body wise, with my mind somewhat clearer than times of mind fog. I am becoming depressed, but trying to fight emotionally to stay ok. I feel very alone, no one I am close to seems to understand I am not choosing to stay in bed, but am physically so drained out, being up is exhausting. Anyone get this? please respond.... Tinarica
Hello Tinarica, how are you feeling today? Unfortunately the site has been quiet over the holiday period but I'm sure people will be catching up and reply soon. It doesn't lessen your struggles but it may help to know that many, many people with an 'invisible' illness have the same difficulties getting those around them to understand. I've been in this boat myself and for me I found writing an open letter not only cathartic but also helpful in communicating my difficulties and how life is for me. Kindest, JulesG from ModeratorSupport
Many of us feel this way at times. This is a time for “us” to be our own “best friend”. Doing for ourselves what we need to do and understanding our situation.
I know it helps to take a little walk when we can and to give thanks for small things in our lives.
Recently added to my life was another “invisible” disease. My total now is 3 (Celiac, Narcolepsy, Lyme’s) diseases…
Try to remember some good things and just I’ve special person in your life.
We are here for you !!!
so, I made a post literally about everything you just spoke about and i'm moving along slowly as more time goes. 1 of the stuff i looked into is self medication i brightened up my room like a dang sunrise so its always sunny. still bedridden to a point. but all my problems kinda fit into the same life urs do.. i wouldn't mind having someone to talk to either.. if you wanted to talk we could always talk too :) but unfortunately narcolepsy widens out ur emotions. your more subjectible to depression. you can try all you want to get motivation but someways you will have it some u wont. its a very upsetting problem
Hello, I know exactly how u feel but the online group was the best thing that ever happened to me since I have been battling this debilitating disease.I would like to share with u that no matter how many times u try to explain it to people they still don’t understand the daily struggle each and everyone of us go through on a daily basis. I have been diagnosed with depression and anxiety due to my narcolepsy, but this disease changes our entire life so I stop looking for people to understand and I just let them know what I have and what it does to me in case I have an episode and that has helped me out a lot. The best of luck to you and you will be just fine this I know because I am and I was in pretty bad shape.
Hello! I am fairly new to this site as well because I have only been diagnosed for about 2 months, although I knew something was desperately wrong for about 2 years. I also suffer from psoriatic arthritis, fibromyalgia & depression. About 2 years into my psoriatic arthritis I began going into liver failure (autoimmune hepatitis) due to a certain arthritis medication so I will be on anti-rejection medication the rest of my life. Stay with me…I am going somewhere with this. I had plans to return to school for my Masters Degree when I met this wonderful narcolepsy. I too am now on disability and cannot work. This is so hard as I have always been very independent and one of those people that never sits down.
BUT, I am fortunate enough to have a husband who is sympathetic to my situation and children that are as well. My daughter just got her driver permit and asked to be home schooled so she can drive me to doctors or wherever else I need to go. My point is…try to focus on the good things you have in your life. At least our diagnosis isn’t terminal. Try to focus on the positive rather than the negative (and boy, that’s a HARD one for me a lot of times too). Sure I get pissed off and upset sometimes because it is life-changing. If you need anti-depressants, get them. It will make a huge difference in your motivation and how you feel. Do whatever it takes to make yourself feel better so you can be there for your kids.
I think it would be great to have real life gatherings for us on the site. Instead of waiting for others to organize it, maybe I will get off my butt and do it myself.
So to make a LONG story short…do whatever it takes to feel better, even if that means anti-depressants. Focus on the positive as much as you can and bury those lousy negative feelings. And focus on your beautiful children! There are people out here that WlLL listen and DO care. The people on this site are great!
Hi Tinarica, like everyone has said, this is the place to go to find people that truly understands, but no story is the same. From the outside everything matches up, meaning our symptoms. However, when you get in closer, the details can change everything. That isn’t a bad thing. That’s what tells me there is still hope for people like us. Where your at right now, is a place most of us have been, probably more times then anyone wants to admit. Myself, very much included. I’m a army veteran with PTSD, hyper - vigilance, and a onslaught of physical problems from hiking all over Iraq, (by the way, light infantry, isn’t very light). I was already avoiding large, and even more often small groups of people, from the PTSD. Then the narcolepsy symptoms started. They found that my N was due to a traumatic brain injury, I had received from the 1 or 5 IED’S that blew up in my face. Huh, who’da thought, bombs… not a good thing. (I try to find humor it) Anyways now, we’ll I’m a hermit. But I am trying to stop that. All I know is this, small steps. Your not going to hop out of bed one day and go off jogging. But as long as you know that, and you can set small goals to complete each day, you’ll find that getting out of that bed becomes a little bit easier each day. Who knows, maybe some day we both can take a jog. I know it’s one of the things I had to give up. I plan to fight back and someday, hopefully soon, I’ll beat down some miles. Don’t let this condition take away the things you love. You need to fight, and this is the place to come, when you need back up.
I thank you for the responses that I have gotten today. It is now 6 p.m., I have gotten out of bed twice I go through a roller coaster has far as my medications go for the narcolepsy and cataplexy. Won’t be in until next week, so I’m just kind of stuck taking medication that is no longer working. It is very difficult to stay out of feeling depressed due to not living. I have 3 children who are still at home and I feel very much like I am neglecting them can I am thinking of going back to Mayo Clinic in Rochester for additional testing and hopefully medication it seems to help for a longer period of time
How do you stop from feeling like dying, when you’re really not living?
well i know how you feel i dont even have medication that works its taken me almost a year to even find medicine and as of right now ive battled it with no meds for a whole month because i dont have 1400 to cover my meds.. truth is, you find ways to self medicate to make you smile everything that can slow down the sadness that narcolepsy can bring you i encourage you to do so. For me i had to make my bedroom look sunny 24/7.. for you it might be your kid making u smile. you will still have urges to feel tired but. if your living for something and id assume you would like to live for your kids. the more you focus on them you may not be running marathons but you. just may .. get out of bed with a smile on ur face for an hour or two.. like me.