Thursday, January 20

You Gotta Put Up With the Rain If You Want To Have the Rainbow

Something I've been telling my friends and family for years - if you feel sad sometimes, it's OK. It really is. As human beings, we were created to feel: happiness, anger, sadness... we run the gamut of emotions, sometimes in just a single day.

Sometimes the emotions span a longer period of time - like a few weeks, for instance.

December was a quiet month for me emotionally. I intended to describe myself as depressed over the past few weeks, but it wasn't depression that kept me quiet and thoughtful during the month. I think that I was mentally and emotionally drained. Taking some time for myself in December allowed me energize my thoughts, examine my emotions, and meditate on events that took place during the year. It also allowed me to plan for this year - take steps to make things even better for my family.

I don't believe in the tradition of "New Year's Resolutions" but I do like to use the beginning of a new year as a sort of catalyst for change. My primary goal is taking better care of myself so that I can keep supporting my husband. Like it or not, I'm a caregiver. Although that may not be my professional title, it is a role that I respect and am determined to do well. In 2010, I saw the demise of many marriages, which saddened me greatly, and made me all the more determined to work towards my marriage's success. I am also determined to have a more positive attitude about our situation. Last year, a dear friend told me what her marriage was like in living with her chronically ill husband. He was sick for most of their 30 year plus marriage, but they remained deeply in love and the best of friends. Another friend is married to a really nice guy who has been ill for many years. He was recently hospitalized, but has since been released. She is now dealing with his uber-expensive medication, live-in help, and the machines he needs to make it through the day. You might think that they'd be stressed out or depressed, but they aren't in the least. In fact, the last time I visited, he lovingly referred to his wife as his "life-saver." They looked into each other's eyes and shared a wonderfully romantic secret smile.

I borrowed a book from the library about managing your marriage when one spouse is chronically ill. I returned it without finishing it after I got to a chapter that talked about separation or divorce being a fair option. I won't quote the author directly because I don't want to mention the name of the book, but I'll give the gist of it. She said that one has to think about themselves, what sort of life they'll really be able to lead with the weight of an sick spouse constantly on them. 

I disagree completely.

Marriage is about so much more than arranging things to avoid unpleasantness. A marriage is like the weather - there are good days, and there are bad days, there are absolutely beautiful days, and there are lulls in-between. It's so selfish to be willing to bolt when the bad days outweigh the good. Unless your spouse's illness threatens your life or the life of your children, it just isn't fair to leave. What's that quote about rainbows? "You gotta put up with the rain if you want to have the rainbow."

Maybe last month was more about introspection than sadness.


  1. This post made me cry.
    As a partner in a 32 year marriage, I can say with confidence that this is not possible without commitment, and unselfishness. If I were looking for "reasons" to quit, I would have had them many times over.

    Instead, I enjoy the companionship and accomplishment only possible from toughing it out and truly working toward a common goal. Every minute has been worth it to be where we are now.

  2. I totally agree with you, Susan. If you look for reasons - sure, you'll find them. But if you look for reasons to stay involved, committed, and in love, it's so worth it. :o)

  3. I have narcolepsy with cataplexy, along with several other chronic illnesses. My husband confessed recently that my narcolepsy specialist took him aside at one of my office visits to quietly encourage him that it was ok to leave me. Wow! If your narc specialist isn't in your corner, who is? Thankfully, my husband's commitment to me is unfailing, although he certainly reaches his limit at times. Thanks for sharing your thoughts!

  4. I know for me I could not make it thru this life I have been handed without the support of my husband. I do have narcolepsy with mild cats and I am a Thyroid cancer survivor. Unfortunately I tend to be a pessimistic person and thankfully my husband is an optimistic person. Due to the combo of both illness I have had to quit working and we had to file bankruptcy. Both of these events were made much for bearable for us due to my husband's support. My neurologist/sleep doctor is not a very supportive person, and by his own admission I am his only narc patient in 15 years and he still doesn't 100% believe I do have it. I was dx by another doctor. I just had the HLA-DBQ1 gene testing done as per my doctors request, I really can't figure out how to read the results( my GP"S office drew the blood so she gave me a copy) and if it is negative for the gene I am not sure what my doctor will do, as he has told me that in his opinion Narc is black and white-- no gray areas and when he asked me to have the test done, he said that was the only thing left he could think of to do! I am on Adderall XR and I am afraid he will stop prescribing it. Oh well time to stop the pity party! Thanks for blogging it's a great way to share.

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  6. Miss Diagnosis & Cheri, thanks so much for your input! Cheri, you call it a pity party, I call it encouragement for all of us. Sharing really does help, doesn't it?

  7. Thank you. Thank you. Thank you. I cannot thank you enough. My husband is my bestfriend and he has narcolepsy. It is hard. I wish I had a support group. No one else in the family understands...think he's just lazy. Its hard with the kids and the house...I just want to scream that some times I'm tired too. This blog has helped me so much. Please...please...don't ever stop writing.

  8. Betty, I am with you... I would never leave my husband, but I am so tired of taking care of him and there is not much left for me. I haven't slept normally for last 2 years checking on him at night (he falls out of bed when xyrem wears off, needs to go to the bathroom at night and take the second dose of xyrem, sometimes he vomits, pees himself). No one understands it. Not even his family. My husband doesn't consider himself chronically ill and me as his care giver. I wish there was a support group.
    Hopefully I work from home and I am still full time housewife with all the chores and special diet he follows(we agreed I'd take care of it and will do everything to help him keep a regular job), but sleepless or interrupted nights made me a zombie, who battles a headache each morning, muscle pains, mood swings. Last week I managed to sleep 2 night in a row. I was so happy! I've done so much!
    I just found your blog. Please don't stop writing. You give us relief. Thank you so much for that.