Saturday, June 27, 2009

Love Intimacy and All That Jazz

All around us we are surrounded by relationships. Our proximity to friends and family, to our activities, to our bodies, even to our minds. Yes, I sometimes think that my relationship with my own brain and body changes with the tide.

Do we always know what is waxing and what is waning? Or must we wait until the time has passed to reflect and analyze? Perhaps I’m just in a reflective mood today.

My multiple sclerosis is of the waxing-waning type. Depending upon which points in time I choose to delineate, I seem better off or worse than another.

Two weeks ago I was demonstrating an MS relapse to the neuro.
Four weeks ago I was treating a suspected UTI.
Six weeks ago it seemed that my RA was flaring up a bit.
Eight weeks ago I noted looking through an increased veil of floaters.
Ten weeks ago I felt great!!

Today, I am mush. Physically, mentally, spiritually. Steroids and MS will do that to you.

At least the raging stage has passed somewhat and I might be sidestepping the weeping stage. Hard to tell just yet. But cry is something which my soul wants to do.

Is it crying for any particular reason or is it crying for a loss? Or maybe for a potential loss in the future.

Right now I am safe. I am loved. I am taken care of. I’m good.

I can walk, talk, eat, dress, think (mostly, lol), see, hear, bath, etc. So what’s the problem?

I am weak. I am wobbly. I am scared of becoming worse in the future. I am afraid of disappointment, in myself and of disappointing others.

Last week during the IV steroids, Rob would ask how I was doing. The day that I said I was walking a bit better, he responded, “I didn’t know that you were having problems.”

Yes, I don’t always want to say - today my legs are crap and my balance is worse. I just try my best to move smoothly and use the correct muscles. Right now my hip flexors are weak and not yet with the program.

Then there’s the numbness. Physically numb and emotionally numb (primarily from the steroids).

The surface of my skin on almost my entire body is still numb. It’s kinda funny with the safety pin test. Poke, poke, poke. Wait, wait, wait. Until a spot feels almost sharpish. It becomes a game. “Let’s find where Lisa will actually think about saying OUCH.”

But one thing which doesn’t OUCH is that Rob knows just how much to be there. He is supportive and patient. On the days I was trying really hard to contain the vile words and emotions, he backed off with the soft voice.

He wanted so badly for me to announce that things were better and better. I just wanted for nobody to talk to me or ask any questions at all. Together we made it through.

Intimacy. Give and take. Wax and wane. Flow with the tide. That’s life.

Two weeks from now, I’m sure that I’ll be feeling much better. It is inevitable.

No matter what happens in the future. It’s ok. Life is a learning experience.

Sweetie, thank you for being here for me. And Happy Belated Birthday!!!

(yes, we can blame the steroid-mush-brain on forgetting the BIG 40.)



  1. Hang in there! Steroids are a hard long week.

  2. Hi Lisa,

    Think that it is good to not reflect too much beter to take each day as it comes and enjoy everything you can enjoy.
    Have a good Sunday.

  3. I would like to show this to some of my friends who think their lives are so much harder and NEVER (for one moment) imagine how SEVERELY impacted their schedules--- taking full-time classes, mothering, working full-time--- would be if they had one (or TWO) chronic, debilitating conditions. I don't think outside people can fully comprehend all of this.

    Thanks for this honest post, Lisa, and I'm really sending a lot of good thoughts your way during this challenging time.



  4. Happy Birthday 40, Rob! You are a good guy. MS is hard for EVERYONE to fully understand and deal with. Lisa, you and your loved ones/friends will pull through. It will never be as bad as you can imagine, so stop imagining. Just find something fun in each day, no matter how silly or small. I met with a woman, former prof. of English, bedridden, can barely talk, she has only her canary and laughed at all my jokes. She and I agreed we have what we have and what will be will be...she still laughs. (The best medicine next to love, no?) I love you, Lisa.

  5. Hi Lisa,

    Sorry you are still feeling crappy, but happy that you have someone by your side to give love and support. Without it, where would we be?

    Excellent honest and heartfelt post. Thinking of you as you get through the steroid days.


  6. Lisa - thanks for your post. Skip (my wife) is pretty private and I don't get too many glimpses into the feelings you describe so eloquently. Glad you have Rob. He sounds like a keeper.

  7. Lisa,
    Thank God life and this disease are only one day at a time and tomorrow, we get a new start. I am hoping you will have a better day tomorrow, my friend. I'm so glad you have such a wonderful, supportive husband.
    Lazy Julie

  8. Sorry to hear that you are going through a rough stretch, I hope things start to look up soon. I too hit some lows this week, so I can relate to a lot of what you write about.

    Another thing in common is that we both have spouses who understand and support us in times of need. They are true heroes.

  9. Wish you were feeling better. I'm reaching maximum frustration with my MS docs.

  10. You have one good man there Lisa! Happy Birthday to Rob! I'm sending good thoughts your way for a speedy recovery. This disease is exhausting isn't it?!

  11. You are so well thought of and surrounded by incredible love...but then again, you already know this. :-)

    Thinking of you and wishing relief in this difficult time.

  12. I was single when I was diagnosed with cancer at 27. 9 years later I am still living with cancer and finally met a man - my now husband - who knows how to be there for me. It is AMAZING to have that kind of love and support and I am so glad you've got it too!


    blog -

  13. Lisa,

    Thanks for sharing such a beautifully written post with all of us. I think it takes real courage to talk openly about these kinds of emotions, and you express what so many of us feel so well.

    I'm sorry you're flaring, and hope you're already starting to feel better. But I'm glad you've got such a lovely, supportive husband!

    Hang in there!