Do you have a supportive spouse or family members?

General
21

Ranger, thank you for your beautifully written, thoughtful and insightful reply to Angie! I wish for you a shared life with a partner you deserve and who deserves you... :-)

Ranger said:

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

22

I have trouble with my family understanding. I feel I am always being told to get more sleep. They don't understand that with the way Narcolepsy affects me, it doesn't matter how much sleep I get. I am still going to be sleepy. Plus with all of my other health condition, I think it is overwhelming to those around me. I can't blame them, I feel overwhelmed most of the time too. How can someone understand something the doctors don't even understand?

23

Memedawn, in one part of your post you said that if you’re constantly interrupted doing things that others can do for themselves, then you’ll never accomplish anything, and that’s very stressful. Yes, that happens to me, too. My adult kids aren’t usually home, but when they do stay awhile, before I know it I’m exhausted. I automatically do little clean-ups I’d normally do for myself (and hardly notice the little bit if extra work) and then things I asked for help with but didn’t get help with because he’s looking for jobs… Then my son commented that I rest a lot. (Quite happy to.) Although I like his company I became com

24

…completely exhausted. It takes a long time for my narcoleptic self to recover because my hard-won “sleep hygiene” and routines get turned upside down as well. As a treat for MYSELF I pick him up from the airport if possible. He knows if I ever fly I take the bus and rail to/from the airport, planning accordingly. He “naturally” :\ will ask for the ride rather than plan his trip to my house on bus and rail.
Texting is the answer - it takes the emotion out, but I still speak Mom language: Please take some extra time to plan your trip including bus and rail time. Thanks, sweetheart. !lol.
When he visits this time he will look for apartments immediately. My ex-husband and I exchanged rare e-mails about it, and I got his support! That’s a success! (I think it will happen) :slight_smile: looking forward to a miracle!