Tuesday, 28 May 2013

Slow Recovery

One of the really annoying things about living with lupus is the time it takes to recover from good things.

It's one thing to have to spend time recovering from being sick, but having to spend days or even weeks recovering from having done something nice is just annoying.

My daughter's wedding was Saturday, and yes, I did do a fair bit in the week leading up to it.

For days now, I've been tired, sore, brain fogged, depressed, and clumsy.  It's just how it goes. I used up more energy than I actually had available and now I have to pay for it.  Yesterday, it wasn't until my son asked the usual late-afternoon question "what's for dinner?" that I realised I had forgotten to eat all day.

At least I remembered to eat breakfast today, and I don't feel particularly depressed, just a bit overwhelmed at the things I need to catch up on.

I'll actually start doing things today, in between naps. I need to start slowly, to "potter around", just doing little bits here and there and resting in between.


  1. Spend time to recover from good things is annoying, but still being able to take part and live good things is great and enjoyable.

  2. Your posts on Sometimes it is Lupus have been a godsend for me. I came across you on facebook a couple of weeks ago and became a fan immediately! I was diagnosed with SLE January 2012. Up until that point I had been taking care of my family, working full time and never stopping. I had issues for a couple of years, but was able to ignore them or work through them without much notice. I developed a rash every time I went outside and was always sick with sinus infections. I felt like I always had the flu or was about to get bronchitis. I started to get depressed about the whole photosentivity issue (love the beach and gardening is my therapy) when the fatigue started to kick my butt. After many discussions with my husband, I gave in and agreed for him to have the gastric sleeve done so he could be healthier and care for me. The surgery was not successful. My husband died as a result of complications the doctor caused that could not be managed. He fought for two and a half months with me at his side. I didn’t realize that during this long continuous stay in the hospital, I was in a flare. All of my issues were easily attributed to stress, pure exhaustion, poor nutrition or just from running on adrenaline and caffeine for too long. He died in June 2012. Every issue, was chalked up to grief or depression. I started realizing everything couldn’t possibly be because I was in my forty’s and fat! Here I am almost a year to the date and I am constantly asking myself: Am I imagining this or making more of this than it is or is this Lupus?! I’m frustrated and disgusted at how this disease has weakened and limited me. I was unstoppable and a force to be reckoned with and now I have been reduced to someone who naps, sometimes can’t open jars and someone who can get a sunburn while driving in a car! I’m 44 and every Sunday night I have to sit down with a basket of pill containers to plan my meds for the week and oh yeah, I walk like an 88 year old!!! Reading your posts and the comments that follow make me believe that I haven’t completely lost my mind in some surreal pity party that I’m hosting for myself and it validates my feelings and concerns. My rheumatologist is wonderful, but she doesn’t have Lupus. She is sympathetic and thorough, but living it, is understanding it. Before my husband died I would say I could understand what widows were talking about, but it is only now that I am a widow, that I understand how wrong I was. The same holds true for Lupus. Keep up the amazing work. Your words of encouragement and FYI posts are awesome! If you come across some helpful tips to deal with photosensitivity other than sunblock(I use a 60 block with UVA/UVB) and long sleeves and pants( I rash out when I am overheated) please post them. I have adapted to gardening in the evening, accepted that I will never go to the beach during the day(even though I live on the Jersey shore) and have strategically place holes in the concrete around my pool for umbrellas so I can swim during the sunlight hours, but driving is an issue. Anyway, thank you for all you do and congratulations on your daughter’s wedding!
    Stephanie Luchnick

    1. Oh Stephanie,
      I'm crying here - I can't imagine what you have gone through, losing your husband in the midst of this.
      You're not imagining things or having a pity party, lupus really does this horrible stuff to you. Adding grief on to that has got to be overwhelming at times.
      I'm glad to have been able to help in some little way, and will keep you in my prayers.
      Grace and peace


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