living with lupus, day by day, moment by moment

The assumption is that since I do not work, and I have a toddler at home, I must be a “SAHM” – a stay at home mom.

Yes, I am a mom and I do stay at home.  But this belies the real truth of why I am home . . .  I’m sick!

I am sick all the time.  Not just some days or parts of the day, but 24/7.  Whereas, most people are healthy and are sick occasionally, my baseline is that I am sick all the time and become ill very frequently.  I walk a tightrope all day and it is a full time job to keep my health in check.  So sleeping in, resting during the day, getting massages, and doing restorative yoga, all sound absolutely wonderful but I am not doing these for enjoyment, I am doing it so I don’t become ill and bedridden.  In between all these activities, I have to keep up with my doctor visits and take all my medications.  The thing that takes up most of my time, however, is being really sick.  Staying up all night because I am in so much pain, or because I am vomiting.  Not being able to eat because I am too nauseous.  Not being able to get up because I am too tired.  Having to lie down because I feel dizzy.  Being absolutely miserable because I have a splitting headache.  Not being able to walk because i have difficulty breathing.  The list goes on, and with lupus, you never know what will be thrown your way.  It’s like playing Russian roulette with my body everyday.

As much as I would like to be, I am not a SAHM since I am not capable of taking care of my son on my own.  I need full time help.  To many outsider, this might seem pretty nice . . . to only have one son, not work and have full time help.  It does not help that I do not look sick.  So I just let the assumption continue and many people do not know what goes on behind closed doors.  Many people would just not understand but I wish they did . . . .


5 thoughts on “SAHS (Stay-At-Home-Sick)

  1. zakia says:

    I can remember very clearly, as if it happened just last week, the first time we met. It was 7th grade French class. I was new to the school and was so afraid of meeting new people. You, on the other hand, were a vibrant, bright eyed girl who sat behind me in class. You made a comment about the drawing I was doing, instead of listening to the lesson, and we became instant friends. You have always been a bundle of energy and laughs. As I read your posts, I can only imagine the suffering you have been experiencing. But I still see that vibrant soul without a doubt! ♥


    1. Thanks Zakia — and we became a partner in crime 🙂 Precious memories!


  2. brandi says:

    I’ve been diagnosed with mixed connective tissue disease , I’m a 30 yr old stay at home mom with 3 under 4. It’s definitely a scary hard thing to swallow that my body won’t ever feel normal to me , I don’t know anyone with this around me to talk to about it. I read your post and can totally relate. Just wanted to say hi and take care .brandi.


    1. Hi Brandi, It’s so nice to “meet” you. I am really happy when I meet moms who are dealing with motherhood and an illness. Having three babies under 4 must e so overwhelming!!! I hope that you keep in touch.


      1. brandi says:

        Thank you I don’t know really any moms with this disease. I thought and was wishing it was chronic body pain but it’s not so it’s definitely taking some getting used for sure.


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