My mother's neck....

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Well, it was a rough week. Rough. I got my period last Monday. Don't you men just love knowing my monthly issues and schedule? NOT! Sorry, it comes with the gender. Anyway, I had a migraine the day before and my friend was here from NYC and I basically stayed in bed all last weekend while he was here. What a joy I was. He is such a nice guy though and swears he had a good time with me crying and in pain, unable to sleep and seeming semi nuts!'s over.

It's a week later and I now feel like a human. And not a scary one. Tuesday I was supposed to do my volunteer position at the museum and I went in only to leave. The shift was from 10 am until 1 pm. I had 6.5 hours of sleep, which a few years ago would have sustained me. Not anymore. I was dizzy and lightheaded and feeling this feeling of panic. I was there for 30 minutes and started feeling like, "I have to go now!" So, I did just that. I came home and crashed. A major nap.

Last week was one of readjusting. Getting down to the basics. My friends who have CFS feel that I push too much. They have all told me that I do way too much. This past week, I listened. I really listened and decided to get rid of what I don't need. That meaning; friends that aren't essential, this volunteer position might have to go; to really step back and check into what it is that I "need." I need space, quiet at times and sleep. I need food, I need warmth, I need some love and that is it. I pretty much didn't leave my apartment all week. It was hard, but I did it and tried to rest even if that meant not sleeping. To just be.

I have too many normal folks in my life who call and want to hang out or get together and while I think it's nice that they see me as a vital part of their life, the reality I see them as a vital part of my life? Not all of them. The phone has been turned off a lot this week and I like it.

Yesterday something vital to my well being did occur; I had customers come and purchase jewelry. That was vital and today selling to stores was vital. That made me feel good and I can now pay off some medical bills or buy food. Not to mention, today was the most beautiful day. The sun was shining and it was brisk out, but driving was lovely. The blue skies and the fresh spring air really was a dose of paxil. Better than any antidepressant and no side effects.

I came home and took a nap. A nice peaceful nap that was helped by darvocet. I was in pain today. I try to stay away from pain meds but I am allowing them more because what a difference they make in taking away the pain and then causing rest, which is what we all need the

The best day though, was one that didn't involve sales of jewelry, or driving. The best day was when I saw my mother. She came over for just a small visit. She is 80 and has essential tremors really bad. She had a hard time climbing my 3 flights of stairs. But, she did it. We went up the block into my cute little town, which looks like a New England town and went for a walk. I was exhausted. My mom had more energy than I did. We sat in this restaurant that is quiet and old fashioned and there were only a few people in there. I sat next to her on this bench. We talked and laughed and made fun of the owner because he was talking for everyone to hear him and he acted like he knows everything...full of hot air!

We left and went into a consignment shop and then afterwords, we sat in the brilliant sun. It was 73 degrees with a slight breeze. I leaned into my mom's neck, my favorite spot on her and breathed it in. She wears Shalimar. I love the smell of my mom's neck. It's like being a baby in a blanket. That familiar "mom" smell. That comfort it brings me. To smell my mom. My mom can drive me crazy, but I love her. Adore her actually.

She said something to me the other day that totally surprised me. I said to her, "Mom, I love you," and she said, "Why? I don't like myself?" I asked her why and she said, "Because I am sensitive...too sensitive and I am selfish." WOW! Stop the presses. Yes, my mom is selfish. She can be extremely selfish and cold. But, I know why. I look at her childhood and there it all is. I told her that I am sensitive too and that has always been a problem of mine.

To me, that one moment which lasted less than 10 minutes, was priceless. It made all of the bad moments, the fatigue and pain and just misery seem bearable. That one intimate exchange where one admits their foibles and her smell that triggers my memory of happy times and beautiful family dinners; you just can't buy that. No medicine or supplement provides it and thank you for that. THANK YOU.

I love my mother, even though there are times I would like to pull a lever in which she would vanish from sight. And I am sure I will write a blog about that too. But for now, my mind is set on loving her until her selfishness rears its head or before I have another hormonal mishap.

It's the little things. Sometimes, that is all we can be thankful for. A 10 minute happening, can be a memory you will never forget. A moment in which you cherish. At the same time, it can be a memory you want to forget. Either way you look at it, it lets you know something are still alive. As much as I feel like I am down and out with CFIDS...I am still here.


Great post, Spitfire! Shalimar. My mom wears Shalimar too...always has. She's 93 and I've been her caregiver since 1980 (when she suffered traumatic closed-head brain injury from a devastating car accident.) It was always pretty easy for me to take care of her when I was well - I enjoyed the time together (and was proud I did a good job)....a different story in the years I've been ill myself with me/cfs. Each day becomes more and more of a struggle. Now I mostly "manage" her care from my own bed! Many days I get up and down long enough to fix her meals and snacks, give her daily meds...and make sure she has her knitting supplies and the books she wants for the day. She can sometimes become intractable and stubborn and a bit childish - which is to be expected. And on the "dark" days (especially when even walking is awkward and painful for me)...I must admit I feel quite desperate for some help!...ANY help!
But your story of your special few minutes with your own Mom...smelling her familiar perfume and the memories that came flooding back...resonated with me.
On the days when I think I just can't go on any strength or energy to give her what she needs (AND deserves!)....I quietly go into her bedroom, and open her bottle of Shalimar and remember the times LONG ago when I'd sit on her bed, watching her dress for a night out with my father - her jewelry box on my lap and covered with her necklaces, bracelets and every ring she owned - the room filled with the scent of that perfume!
And what it felt like to nuzzle her neck as she kissed me goodnight.
It helps me to remember that she was once quite beautiful, adored by my father and me...when I'm caring for this tiny, bird-like and frail white haired woman. It helps me to remember to cherish her and treat her with gentleness, compassion and the respect she needs!
One of my biggest regrets is that she and I are no longer able to go places and enjoy the outside world. Ironically, we are both confined to the house - she by the frailities of her age...and me by the disabilites that seem to grow worse each day.
I'm so glad you wrote this...and that I read it! Tomorrow I will try harder to give just a little more....sometimes I need a gentle "reminder" to look beyond myself - while there is still time!
So glad to hear you are feeling much better than last week. It's in these better moments, that we realise how hard & unbearable the worse times are.
Hope that tomorrow morning you wake up & feel even better still..................
WOW. That story is so similar to mine. I have had to take care of my mom a lot. Right now it is REALLY hard too when I can barely care for myself. She is in a retirement community and has assisted living if she needs it. I have had to tell her that if anything truly traumatic happened, I would not be able to be there as much as I would like to. This breaks my heart and makes me feel awful. I have always liked being there for her but I am not well enough. When things go wrong, she wants me "right now." She lives a half an hour away and it can be exhausting. She wants me to go to the hospital and then to her apartment and back to the hospital.

Anyway, you are so brave and an AWESOME person to take care of your mom. I am not alone in that with being ill. It's not an easy task especially when they have dementia.

I, like you, used to love to watch my mom get dressed and put on jewelry and SHALIMAR. It is her sent. So yup, when you wrote how beautiful your mom is; that is how I felt about my mom. When I smell her neck, I remember that she was once this beautiful vivacious woman who danced to Frank Sinatra and was the classiest yet jazziest woman in our neighborhood.

Going anywhere with my mom is a task because she gets overwhelmed and walking is too difficult for her.

I love her. Thank you for writing what you wrote because I can so relate.

I am sorry your mom is unwell.!

Thanks Jackie!

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