Safe Harbour

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safeharborWhen you live with an autoimmune disease like lupus, your overall health and well-being is usually in an ongoing state of flux.  I don’t expect to feel crummy when I wake up in the morning.  I never take for granted the days without complications or reminders of my limitations.   Some days, however, I wish there was a safe harbor where I could go for rest, comfort, love and reassurance.  Life with lupus is often an unpredictable crap shoot.  And the long-term odds are never on the side of the  patient.

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A good day for me is when the medicine is working, pain is manageable, the weather cooperates and the mind is untroubled.   Most of the time I am optimistic.  Most of the time I am fully engaged in the here-and-now.  Most of the time I can laugh about almost anything, especially myself.  I feel creative, energetic and productive.  When I can reach out to help someone in need, I am acutely aware of the blessing and grace that enables me to give.

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There are other days when I feel vulnerable and exposed.  Today is one of those days.  I hate the way that makes me feel.  I resent feeling weak.  I walking with a limp.  Anemia gives me a pasty complexion.  The cutaneous vasculitis lesions continue a slow, persistent march across my torso and extremities, despite all the drugs and all the infusions.  I have bruises in unexpected places, courtesy of steroids.  Chemotherapy and steroids have taken their toil on my appearance.  Sometimes I feel as dumb as a box of rocks …  “lupus fog”  caused by small vessel vasculitis or middle age or heaven only knows what else.  I see all too clearly the downward slide of  my baseline health and it scares me.

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I often wish for a safe harbor; a loving partner who would comfort and reassure me during storms caused by lupus.  I hear stories about how spouses pair up for doctor appointments or keep watch at the bedside of their loved one in hospitals.    Someone who keeps their promise in good times and bad.   A partner who is willing to  clean and shop when the other one is too sick to handle it alone.   What does it feel like to be loved for who you are, with or without a chronic disease?  Will I survive without this type of love?  Of course.  Would it really make a difference when lupus has the upper hand?  I wish I knew.

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There are other types of safe harbors in my life … my home is often a refuge.  I love to read and can easily get lost in a good story.  When I’m buzzed on steroids, I often set about cleaning out dressers and drawers.  I don’t take my friends for granted and truly enjoy the safe harbor of their company.  For years, I have spent quiet weekends at home, and don’t think about the fact that I’m alone.  But on bad lupus days when it’s painful to walk and getting out of bed is a big ordeal, I wish my life was different.  I wish it wasn’t so hard to reach out to people instead of opting for self-imposed isolation.  I don’t want to expose my insecurity.  This is my pattern when lupus has the upper hand.  Maybe there is no such thing as a safe harbor when I feel like crap.

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I have insecurities and fears, just like everybody else.  I am also a strong, intelligent, independent woman who appreciates the blessings in my life.  I’ve been divorced, unemployed, raised a child on my own and started my life over more than once.   And I have faith to keep trying.

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I have lupus.  And some days are not easy.

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7 responses »

  1. The fact that you manage to stay so well-balanced and focused in a positive direction says so much about the strength of your character.

    This post breaks my heart in so many ways. I hate knowing that you suffer so much despite the advances of medicine and medical treatments. I also hate knowing you are going through all this alone or basicly alone, without a life partner. That’s so sad.

    You are an amazing woman and I wish you peace, love, and happiness… in whatever form you can find them.

    Hugs.

    Thanks, Trish. You are so sweet.

  2. I know it isn’t easy. As a matter of fact it truly sucks. I hate that these diseases even exist. Nobody likes to expose their insecurities but I love and appreciate your honesty. I wanted to say “we all have our days,” but I know you already know that and I don’t want it to sound like I dismiss your feelings because I don’t. I just want you to know that it is okay for you to feel the way you do sometimes. You are strong so much of the time that you are certainly allowed those times where you want a safe harbor from your pains and concerns. It’s tough to put on the face and fight the fight each and every day. You don’t have to though and you don’t have to feel one bit bad about it. I think it is healthy to acknowledge your fears, pain, and struggle as long as it doesn’t make you dwell on it. Okay, I think I finally wrote what I meant to say. 🙂 Hugs to you and may better days come your way. You certainly deserve them, my friend.

    I’m blown away by your lovely comment, Teeni. And yes, you made your point so very well. I am blessed to have wonderful blog buddies like you! Thank you so much for your hugs and support!!

  3. Thank you for this post. You’ve put into words what so many people feel and can not or do not express. I’m somewhat speechless – it’s such a beautiful expression.

    Also seeking a safe harbour,
    -Q

  4. You’ve just stated my life, almost perfectly, although I never had children. I have had lupus for over 14 yrs and done the chemo and flares and meds alone. I have the support of friends and family, and I feel tremendously blessed for that. So, I am not entirely alone. I count my blessings and “gratefuls” a lot. Thank you for gracefully putting into words what many feel.

    Wishing you blue skies and “good days”.

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