If you are not familiar with Spoon Theory from But You Don’t Look Sick? then I will summarize it for you. Basically, someone with a chronic illness like lupus has to make choices every day about how to make the best use of what energy they have. If they use more energy than they have available, they will probably pay for it the next day.
The problem for us as a family is trying maintain a balance between coping with the effects of lupus and having a normal life. This morning my wife took the kids to the zoo with a friend. This is a totally normal and fun thing for a mom to do for her children, but when the mom has lupus, it’s a major undertaking just because of the sensitivity to sunlight. Considering that taking a group of kids to the zoo would wear out a regular person, you can understand how it totally exhausting it was for someone with lupus.
My question is how do people manage this balance between the acceptance of the illness, and the day-to-day business of life?
I’ve come across this spoon theory before and wrote a poem about it that I stuck up in my bathroom…It helps illustrate my condition to friends etc., I do find it hard to accept though that a day out can lead to losing time through fatigue, sore hips or headaches. My husband often reminds me to rest and relax.I think that your family have to support you, mine do, and both my children accept that I sleep during the day, can only do certain things and this enables me to not use all my spoons too often.
Could you share your poem?
I’d really like to read your poem too.
Wendy
I would love to read your poem, my eldest daughter is 25 and has been diogniosed with Lupus.
Deb
I know this was written in July, but I wanted to comment. I have to make sacrifices, like if I want to take my kids to the zoo I ask someone else to drive and I nap on the way home (usually it’s a close friend that understands). not driving is worth the few dollars I give them for gas. I also sit. when the kids are doing something that I can see from a bench I sit. This works for shopping too. We were looking for shoes for my 8 y/o this weekend and I would walk to the shoe department sit and then my husband and son worked on finding shoes. I think it’s just best to find times to take a break. My kids & husband totally understand and as hard as it is sometimes I just remind myself that I’m saving my spoons for something later in the day. I also work full time and have a carpooler that drives every other week so I can rest. It is possible. and with the support you give your wife I am sure she can find that balance. I don’t know what I would do w/o my husband and all his support… sometimes I wish I could show him my appreciation- nothing ever seems to be enough.
There are so many ways to manage living with lupus, it doesn’t mean its going to be easy but with awesome support (like you) one living with lupus can be a bit more comfortable. It’s hard to articulate how grateful having a support system is for a Lupie! I “RAHHHHHHHHHHHHHHH” and flap my butterfly wings for your awesomeness!
I’d like to share my blog with you, it only has a few posts, but all are about my journey with Lupus. I was diagnosed this january of 2010 and its been a rough but educated road since then! Let me know your thoughts on it if you do take a peek
Stay strong!
http://www.hersilverlinging.blogspot.com
This is amazing. I have suffered with this absolute exhaustion for many years. I have always felt embarrassed that I can’t keep up with other people and make excuses all the time. If I go out for a day it can take 2-3 days in bed before I have the strength to keep going. I try to do what needs doing in the mornings and have a rest in the afternoon otherwise I don’t have the energy to cook dinner. I will know late next week if my blood test shows I have Lupus but I certainly have most of the symptoms mentioned. Please keep telling your stories.
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how life has lupus is that a full blown for 2 years the last time she stayed in remission for 5 year. now we are separated we never make love any more she don’t even want me to touch her she says she sick. I love her but I don’t know what to do
we live like roommates not a marriage couple please help
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