"A word in earnest is as good as a speech"
~Charles Dickens: Bleak House

Tuesday, July 19, 2011

Summer and Lupus ..... how to find a balance!

Today I blog with a sore throat & a bout of sneezes! Summer colds stink! But it is working its way through my house & so I guess it is my turn. I blame it on air conditioning!

Lupus makes any cold worse. I am tired most of the time anyway, and the fibromyalgia makes me achy and sore. Getting out of bed on most days is a process of talking to myself and willing myself to move. But I do it, because really what are my choices?

The day I was diagnosed I made a choice that Lupus would not control me, I would control my Lupus. I was naive. One of the important lessons I learned early on was what little control I actually had over my disease. But what I could control was my reaction to it. I had a choice: was I going to lay down and say poor me, or was I going to be strong and positive? Most days I am positive, my rheumatologist and nephrologist think that is why I have done so well, why my kidney disease is in remission and why I am on so little medication five years in. I don't know if that is true, but I go with it. I would argue that today is not my most positive day .... I am having a fit of the "poor me" syndrome (although not well researched I am sure it is a symptom of Lupus).

I used to follow a lot of Lupus discussion groups, but I stopped. I found that many of the people were suffering from the "poor me" syndrome and it was contagious. My life if full of enough negative, I did not need to seek more negative from others. I have recently found some really good blogs written by people with Lupus - very positive women who deal with the disease with humor and positive energy .... I have found that this too is contagious and I am good with that!

I have learned to listen to my body. If I don't feel right I call the doctor or try and relax. I even attempt to go to the gym occasionally, but life has a way of getting in the way of that. I don't take as good care of myself as I should. I work too hard, push myself too much & don't eat as well as I should. But I listen and my body tells me when I have crossed the line and need to step back and reevaluate, and I do.

But I digress .... this post is about summer and lupus.

This is the time of year that I am really reminded that I am sick. Extreme temperatures wreak havoc on my body: instead of being tired I am exhausted, instead of being achy I am in pain. And I get frustrated! I want to be at the beach with my kids. I want to be at cookouts and parties with my friends; and there are so many days I just can't. There are more days than I care to admit that I just come home from work, turn on the AC and head to bed. I am not supposed to be in the sun at all, this is not an option for me .... there are soccer games to go to, there are zoos to visit, but there is a price to pay for these excursions and I have to make choices. I understand that if I go to the zoo on a Friday I may not be able to get out of bed again until Sunday. Often times I use what energy I have to go to work and spend time with the kids (I don't think either of my children understand what mom being sick means - and I am ok with that).

Life with Lupus is a series of choices & cost/benefit analysis. It is about balance and taking a long look at what is really important to you. For me the most important thing I can do is create happy memories for my kids of time they spent with their mom. I am fortunate to have a great family behind me. When I over exert myself and have to take it easy, my husband picks up the slack. When I am stressed and can't deal with the kids, they have a day at Yia-Yia's house. Life is good. I am fortunate and that is really what keeps me going.

So today stinks! The expected temperatures of 95 degrees on Thursday and Friday are not something I am looking forward to. But the two mottoes of my life "It is what it is" and "it could be worse" will get me through as they always do. So, bring it on summer! I am ready!


  1. i think you're entitled to a 'down' day every so often!!! and then you get on with life...

  2. Everyone deserves a day. The balance is how to make sure a day does not turn into a lifetime! My Nana always said you have 15 minutes of self-pity for any situation and then suck it up and move on. Advice I try to pass on! :)

  3. Your Nana sounds like good people! I'm so sorry you caught Lee's cold...I had thought he was past the point of being contagious, then phase two hit...not fun! Hope you feel better quick!

  4. You are an amazing woman and mother in spite of it all. I am so grateful that you finally listened to me and became a part of my family :) Please don't hesitate to call me if you ever need help. I love you and your family and would be there in a heartbeat.

  5. We have a mutual blogging friend in Tony Beale Leann who introduced you to me. I do take this opportunity to wish you all the very best in your fight against Lupus. Your positive attitude I greatly admire. I couldn't agree with you more on the horrors of little girls wearing padded bras. Whatever next? They are just being deprived of their precious childhood. My love - Betty (Blessings in Disguise). Please keep on blogging.

  6. Excellent Betty! It is very nice to meet you!!! Ironically I was following your blog already! It truly is a small world!