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What To Do On a Bad LEMS Day
Not every day is a great day when you have Lambert-Eaton Myasthenic Syndrome. Heck, not every week is a good week. Sometimes my week going into IVIG can be pretty bumpy as those pooled antibodies I receive every four weeks, leave me. My days can vary from pretty strong, to really bad hip weakness for no apparent reason. Sometimes I just don’t feel well, period. The bottom line, LEMS patients have bad days and don’t feel well. Many of us also have other medical issues, besides LEMS, that play a part in how we feel.
Because we know there will be days we are not at our best, a little forethought and planning are in order. Here are some strategies for those bad days.
If you’re having a bad day, cancel or postpone activities that aren’t essential. Dial back time and communication with others so you can concentrate on some quality self-care. Pamper yourself, and don’t feel guilty about it. Listen to music or watch some streaming TV, catch up on a series, or watch a rom-com. Make that bad day a holiday.
Other things we can do to make bad days easier include keeping easy to prepare food on-hand in the fridge. Having a few frozen meals or calling in a take-out order from your favorite nearby restaurant can make your life easier, and warm your heart with comfort food when you need it. Also, consider a long, luxurious bath or shower to pamper yourself, followed by some quality couch time. Finally, make sure you set yourself up for a good, restful sleep. Whatever your routine is, make sure to do it. A great sleep can get you back on the good road.
Do you have any strategies I haven’t mentioned? Maybe I can incorporate one of yours.
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2 Replies
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Thank you for the tips. I am pretty hard on myself when it comes to listening to my body. Pushing myself only makes the situation worse. I do try to accomplish things early morning because I tend to go downhill by afternoon.
I transitioned from Ruzurgi to Firdapse about 3 weeks ago and do not think it is as effective. My weakness has worsened but I am trying to give my body time to adjust to Firdapse.
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@wanda-king-grischkowsky I think you hit on two key things. The first, don’t beat yourself up. Second, listen to your body. Both are key to making the best of a not-so-good LEMS day.
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