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Posted 3/17/2018 2:24 PM (GMT 0)
I recently went to a family gathering. Most of the family know I was diagnosed with lupus last year. My sister in law seems to think that all i need to do is take vitamins and double up on vitamin D. She is a hyperactive adult and is always taking on multiple projects, keeps a perfect house, shops, grocery shops etc. Up until about 5 years ago I kept a nearly perfect house, did my own grocery shopping, enjoyed all day outings and had no problem confirming dates for her togethers, weddings, vacations. Surprise, I can't do any of those things anymore. Was supposed to be on the road to my brothers house right now with my husband and granddaughter. Yesterday was spent in the bathroom. When sitting on the toilet or throwing up in the toilet, I lay on the bathroom floor. Today, my joints are on fire, my feet and face and hands are swollen and I have a migraine. Give me some vitamins and vitamin D to cure my lupus and bring my kidneys back from 40 percent in just a year. So long winded as this is, how do I convince those who think this
Posted 3/17/2018 2:28 PM (GMT 0)
Sorry, computer going bonkers. Convince family and friends this is real. I'm not lazy and I'm not avoiding responsibility.
Posted 3/17/2018 4:48 PM (GMT 0)
It is sometimes very difficult - I gave up trying to convince anyone and just started doing what I could (and what was most important to me) and ignoring the rest. It's not easy when they are harping on you to do more, or calling you lazy, wish I had a solution for that.

The only thing I know of that has helped anyone convince those who don't accept our limitations is "The Spoon Theory" /cdn.totalcomputersusa.com/butyoudontlooksick.com/uploads/2010/02/BYDLS-TheSpoonTheory.pdf

Maybe some of our other members have some thoughts?
Posted 3/18/2018 1:04 PM (GMT 0)
Thank you for your quick reply. I did actually ask my granddaughter to read The Spoon Theory, hopefully she will. Have decided to give everybody a two hour window before we go to see my brother. I had an ongoing appointment with the dog groomer. I've decided to cancel that. She told me I could just call in the morning and bring the dogs in. I'm learning that the only thing that I really need to keep are doctor appts. And even just those are difficult. It still surprises me the number of people who have no idea what lupus is, although until I finally got a young doctor who told me something wasn't right. I shouldn't have 3 blood infections, the first turning to sepsis, in 6 months. She ( the doctor) said she loved puzzles. She ordered a ton of blood tests, went through 20 years worth of my medical records. (military base facility). I never expected a call back with a referral with a rheumatologist. She said she thought this might be lupus. More tests with the rheumatologist, and a lot of waiting. For Valentine's day last year I finally got a final diagnosis of lupus. Since then I've been gathering as much info I can find on this disease. So I guess I need to give friends and family a break. I really had no idea what lupus can do to your body until it attacked mine. I wish it was as easy as taking some vitamins. I'm going to hang a copy of The Spoon Theory in my house. Again thank You for responding. God Bless.
Posted 3/19/2018 5:55 AM (GMT 0)
Hi!

I can totally relate reading your post. When some of my friends found out about my Lupus diagnosis, their words were "at least it's not cancer". I was speechless. But you're right, I find many people, medical staff included, don't know or understand Lupus and the ill effects it can have on day-to-day life and activities of daily living. I'm sorry you're having a hard time with those that don't understand you. I know this won't make you feel better, but I can relate. I'm wishing you strength and health.
Posted 3/19/2018 3:08 PM (GMT 0)
I would agree with Lynnwood. Speaking from personal experience of having a diagnosis of 22 years now, as difficult as it is and as much as their words hurt there comes a point you have let the words of others roll off your back because the stress of trying to educate them becomes too much. Do you have a mobile dog groomer in your town/city? Reason I ask, I too became too exhausted to keep appointments other than my own doctors appointments for awhile, still try to keep commitments low because with lupus you just never know what I will feel like; so I now use a mobile dog groomer. The lady has an RV that literally pulls up in my driveway, she comes in and gets my yorkie and brings her back to the house! It’s wonderful! There are many times I greet her in my pajamas because I’m having a bad day, I don’t feel bad about it at all. She knows I have lupus and actually has contacted me on several occasions because since she’s been grooming for us her sister in law was diagnosed.

Gentle Hugs,
Melissa
Posted 3/26/2018 11:39 PM (GMT 0)
Hi, It sounds harsh but people don't care enough, even family members..thats my take on it anyway. If they could see a broken arm or leg they would sympathise but because its something that they cant see they have no patience for it.

I agree with the others that I would stop trying to convince people that you are feeling like crap, because just doing that makes you feel worse!

Best to you.
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