This thread pops up whatever we are talking about - support from our nearest and dearest. Some of us have it and some of us don’t. How much does being without an understanding family, or any family at all, impact on having narcolepsy?
Hello All,
5:12am here, just “jolted out” of sleep which happens often. But this is a very good question to think over before answering.
Back down for more sleep. Fortunately I don’t remember what dream just jolted me out of sleep after 2gours. Not a bang, flash of light, pan on the stove unfire, a car In the driveway, door bell - none which were “ever real” but still jolt me awake at times. Back down but will try to answer later in the day. Narcolepsy and insomnia are a pair I haven’t figured out yet…
Best to all of you,
Ranger
Hi All,
My family is not supportive. They are highly uneducated about narcolepsy, yet all have their opinions. Most of my family tells me they think my brain will fix itself. This is frustrating. And, I find stress makes all my symptoms worse. They don’t understand I went through rigorous and tortuous sleep tests to come to this conclusion, through a neurologist and sleep clinic, despite having explained several times.
Support is crucial to help ease the symptoms, anxiety and depression- in my opinion. Just because we as narcoleptics don’t have open, visible wounds, doesn’t mean we’re not hurting or battling this horrible narcolepsy fight, day in, day out…minute by minute. I wish more people would understand.
Can you introduce them to some of the videos on You Tube SleepySleepyForever. I learnt a great deal watching them.
I am lucky to have a supportive spouse who has educated herself but sometimes still ferl like she doesnt understand what I actually go through. I have learned to put on fronts the best I can. As far as my family they have not even once asked me to explain narcolepsy or asked what I go through. They have never asked what they could do to help. One comment my mom made when I finally had to stop working was suck it up. That made me feel great jk some family have even had the nerve to talk behind my back and ask others if I was really as sick as I say. What do you do in these situations any advise?? It makes me feel like my family could care less about me and my family…
My husband is supportive most of the time but he and my kids tend to forget that I’m narcoleptic at times and still expect me to do it all, my husband tends to try and judge how I’m feeling by my facial expressions, unfortunately my cataplexy his me in my face so when I’m fatigued he thinks I’m mad lol, my Dr have explained it to him just like I have and he has gotten better but he still do it sometime so I just say whatever they will never understand.
I am one of the lucky ones - truly fortunate to have a boyfriend who has educated himself (or rather, allowed me to educate him) but as Angie Frazier said, he will never actually know what I go through and I put on the best possible front for him. It's a good thing, actually - keeps me living as well as I can, given the circumstances! Family is supportive as well; they may not fully understand narcolepsy, but they understand I have my limitations and that's good enough.
There's are a couple of great ones I know about: one by Elaine Armstrong and one by Fiona Gane.
Nel said:
Can you introduce them to some of the videos on You Tube SleepySleepyForever. I learnt a great deal watching them.
Thanks for those pwntek. Not sure if I have seen them but I will have a look.
For those of you who don’t know, I am a Ben’s Friends volunteer moderator and I don’t have narcolepsy. I do however have a rare and painful neurovascular condition which is not obvious unless you are looking for it at the moment when I have a ‘flare’ or encounter me at night spending hours walking up and down like a zombie.
When I was asked to join this community I read up everything I could find about narcolepsy, which I had heard of, and cataplexy which I hadn’t. I have watched a dozen and more videos, I read research papers and everything you lovely people write, I know about sleep tests, which drugs are available and how narcolepsy affects you. I try to keep up to date with new research. I know you sleep badly at night and need daytime naps. I know about sleep paralysis and night terrors. I know what it is like to be unable to fight overwhelming jet lag.
BUT I STILL DONT KNOW HOW IT FEELS TO BE YOU DEALING WITH NARCOLEPSY/CATAPLEXY.
So you have to forgive your spouses and your children for sometimes forgetting and still treating you like the person you once were.
No excuses for members of your family Angie who can’t be bothered to find out what has happened to you and even doubt that you are ill at all. That must be so hurtful and I don’t know how you can handle it. I know in my case at first I tried to explain the situation, that nothing was going to change and I just hoped it would not progress to something worse. Still they ask, ‘Oh have you not got over that yet?’ So now I accept that they will never understand and just say, ‘No sorry, no can do’ and let them think what they want.
Thank you for this post. I’ve learned so much about my family and how the different personalities get frustrated when they want to help, but they only know the tough medicine of self-sufficiency. Very tough cookies, my sisters. I didn’t expect to be learning about forgiveness now, but it’s the glue needed for relationships worth saving.
I also feel like Nel: my husband left, and spouse or not, life is lots of work. I’m still raising two twenty-something’s, young men, and I had to gently ask the one visiting to stay away for awhile as he left for the airport. He felt a little bummed, then apologized profusely for leaving the sink full of dishes. I simply get worn out beyond a certain point, and I hope he becomes aware of this with anyone he lives with. It’s a team thing.
Carol, I wished my son would apologize for leaving any mess. He doesn't see anything wrong with the way he complicates my life. No empathy whatsoever. But he is the only one that comes close to understanding my narcolepsy, because he has lived it with me and he also has a sleep disorder. I had him take the sleep test shortly after I took mine. He has sleep apnea and mild insomnia. He hates the way everybody judges him and his sleep patterns that he can't really control. If it wasn't for me majority of the time, he wouldn't have been able to get up and get to some appointments or even work. Although he understands that I have awkward sleep patterns, that I can sleep for hours (sometimes for the entire day), and that it can come at anytime even though I can feel it coming on, he doesn't understand the mental strain and emotional toil it has on my life and how that reflects my relationships with people. He doesn't understand that is why I get frustrated when he makes the little things in my life complicated. I feel like there are never enough hours in a day and I have to have freedom to get things done that I need or want before I have another sleep attack. If I am constantly back tracking or interrupted to do something that a person can do for themselves, I will never accomplish anything. That is very stressful. I just need a little understanding and cooperation which I never get.
My other family seems as though they will never get it! And I hate explaining it to friends, because they always want to console with bad, sincere, but still bad uneducated advice. They would say things like, "Get some sleep early so you can be well rested and you will be able to wake up early refreshed to start your day", "Try some natural herbal remedies to perk you up", or "It's just stress. You need to exercise or go for a walk." Actually, my family have been guilty of the same. I don't know what part of "I am sleepy a lot and I am never truly rested no matter how much sleep I get" do they not understand. I can't just go to sleep early and wake up refreshed. I will fall right back to sleep within and hour or two after being awake if I am not doing something stimulating. Sometimes even then I dose off. But like angie frazier said, they never try to get a true understanding of what I go through and they never ask how can they help. It usually feels like they get agitated when I do talk about it, which makes me just not want to talk about it. I guess it would be easier to deal with and brush their opinions off if my family wasn't so judgmental and didn't expect so much of me.
I'm sorry. I just realized I wrote a short story...literally. I guess I just had to release. :)
Here's a video (thanks to Elaine Butler Armstrong) that has helped people explain narcolepsy to friends and family who just don't understand:
https://www.youtube.com/watch?v=bGbD51Er-gI
Nel said:
Can you introduce them to some of the videos on You Tube SleepySleepyForever. I learnt a great deal watching them.
Here's a video (thanks to Elaine Butler Armstrong) that has helped people explain what day-to-day living is like with narcolepsy to friends and family who just don't understand:
Thank you pwntek. I watched the video and I am going to send the link to my family members and share on my Facebook page. I'll see what happens. Also, thank you Nel for sharing.
pwntek said:
Here's a video (thanks to Elaine Butler Armstrong) that has helped people explain narcolepsy to friends and family who just don't understand:
https://www.youtube.com/watch?v=bGbD51Er-gI
Nel said:Can you introduce them to some of the videos on You Tube SleepySleepyForever. I learnt a great deal watching them.
It’s great. I watched it several times and it set me thinking about my time working in schools and the kids who just couldn’t stay awake and of course we assumed they had been up half the night playing computer games… If I had my time over again I might be able to ask the right questions.
Thank you pwntek and Nel for the video suggestions; I'll take a look and send them on. And thank you memedawn for your story.
My husband has been extremely supportive and I count myself as one of the luckiest people to be with him. Hey, he's not perfect! But I appreciates what he does. Before I was diagnosed with narcolepsy, I was going from doctor to doctor trying to find out why I had no energy, couldn't think straight, was depressed, and gaining weight. I was pretty sure that I had thyroid disease but no one would take me seriously. I finally arranged for the proper blood test and was diagnosed with Hashimotos Thyroiditis, an autoimmune disease. That took 2 years. It took another year to get the meds right. During those years I could not do anything but work and sleep. My husband took over everything else. We didn't know what was wrong with me but he knew I was doing all that I could. Yeah, he has a repertoire of only 5 meals that he could make, so we ate the same meals over and over again. But there was no way I'd ever complain. Not about that or his cleaning capabilities or if he wanted to take a day off to golf. However I won't let him do laundry--Ever!
My siblings don't know much about narcolepsy, and they haven't ask much either. But they don't hassle me about it either. They had to accept that I was ill the years before I was diagnosed with Hashimotos and there are no outwardly physical signs of that disease also. (I actually had 2 docs tell me that I didn't look sick!) My parents were alive at that time and didn't understand anything that was going on. My siblings kept my octogenarian parents calm and out of my hair.
Most friends don't get it; yes, they think they are so helpful with suggesting that I not take naps during the day so that I'll be able to sleep at night. And the night time teas, melatonin, essential oils, homeopathic remedies. But they just want to help. And really, if they don't accept me the way I am, who needs them!
I usually handle most of it with laughter. If I don't laugh I'll most likely cry. So I make fun of my hallucinations and try to find humor wherever I can. I don't make light of the disease or anyone (including myself) who has it. But those freaky dreams and not being able to wake up while the world is going on around me and those words that I can practically see but not remember? Yeah, if I didn't laugh I wouldn't stop crying.
Hello All,
This is a good question but I think it requires a delicate and careful answer. Still thinking this one over…
Take care,
Ranger
Hello Angie,
It may take a long time for those around you to understand try to accept that the best that you can. You are blessed to have a supportive spouse who tries to understand. That is a major plus. Even is it sometimes falls short sometimes.
Deep inside I think your family cares for you but even they are in a hard position to understand the disease and how it affects you. Narcolepsy and it's affects are complex and some what varied in how it affects each one of us (I learned that by reading what all of you write here.)
The most important understanding is what you have so that you can face and take care of your self in the best way possible. It's not easy but it gets a little easier as you go farther along and make the right best choices for you each moment.
Take care,
Ranger
angie frazier said:
I am lucky to have a supportive spouse who has educated herself but sometimes still ferl like she doesnt understand what I actually go through. I have learned to put on fronts the best I can. As far as my family they have not even once asked me to explain narcolepsy or asked what I go through. They have never asked what they could do to help. One comment my mom made when I finally had to stop working was suck it up. That made me feel great jk some family have even had the nerve to talk behind my back and ask others if I was really as sick as I say. What do you do in these situations any advise?? It makes me feel like my family could care less about me and my family..
Hello All,
It's taken me awhile to respond to this question. It affects me greatly.
I have one younger brother 300 mils away who spent a good deal of time with me during my early struggle to find out what was wrong with me. He now can tell by my voice and words, the look in my eyes and how it is affecting me at any moment. But he is 300 mils away.
Recently my doctor ask me this similar question...previously she asked "did I have anybody in my life a (partner)"? No, she seemed surprised. This time she asked about my children (4) I don't want to say anything bad about my kids. One daughter walked away, one daughter is cordial, one daughter has been helpful with medical research and supplement and nutrition information and I have a son who is communicative and I'm close to. But I've never been asked by any "how can we help", "what do you need" or what would make your life better?
When the doctor recently asked about my kids It started me thinking. What is my life, why am I here, "smelling a steak cooking" is very different than having one for dinner.
A supportive spouse offers a shared life, a look of understanding, comfort in the uncertain moments, shared joys and experiences. And, I would hope a real life shared and experienced together. A single life can be difficult on it's own but add in narcolepsy and it feel like observing life on another planet which is not yours or your experience.
The human need for "psychological visibility" (I don't like psych terms but that one best describes the thought) with a partner, I think it is one of the major parts of the essence of a full human life. We may deny it because of past events, hurts, wounding. But it's need, is a reality no matter how we try to ignore, cover, run or guard against it.
Our cultures, our upbringings sometimes seem to be lost in superficial relationships. "I'll scratch your back if you scratch mine" but lets not get deeper to be authentic, honest, real, supportive and loving each other. The thing about the visibility I'm talking about, it allows each person to be truly and wholly known for the unique person they are in total safety with each other.
In closing an excerpt from something I wrote before I got sick: Love walks in the dark night of the soul, love kneels in the midnight hour, Love gives, releases, and sends forth with peace. Love, the deep connection between two people. Love is when I am at home, when I am me, and you are you… safely with each other.
I think this need becomes greater and felt more when facing any life difficulty and narcolepsy.
Best to all tonight!
Ranger