March 4, 2016
Flares, for Lupus patients, are a way of life. One of the lessons we Loopies learn is that flares, mild or severe, can happen anytime and anywhere. They can creep up slowly, or hit us like a bolt of lightening. One minute we’re out and about, and the next we’re flat on our backs in bed. We can only do so much to prevent or control flares. What we CAN do, however, is prepare ourselves in advance. If you want to worry less, and heal more, here are some easy tools and techniques which may decrease the effects of flares.
We’ve all been there. You’re flaring, you feel absolutely miserable, and all you have left in the cupboard is an old can of soup and a sleeve of stale crackers. Does this scenario seem familiar? It’s an argument for preparing for a flare before it even occurs.
Make sure you are always stocked up on healthy groceries, current medications, personal care/first aid items, and anything else you require regularly. Perhaps it might help you to keep easy-to-prepare items on hand; who wants to cook when you can barely stand up? I myself try to keep protein shake ingredients in the house; even when I am hobbling around from fatigue, I can usually rally enough to blend something.
Organize easy access to your important contacts (family, friends, medical professionals, support groups, SLE resources, etc). The last thing you want to do while you are suffering is hunt for anything! Be it electronic or paper, be certain that you always have up-to-date phone numbers and email addresses handy.
Don’t be a hero!! Ask for and accept help. In meeting many Loopies over the years, I have found that we are often overachievers who strive for perfection. But perfectionism is impossible when one can barely wash one’s hair or one’s teeth! Perfect? How about adequate?
For many of us, delegating tasks to others can cause anxiety. Learning to accept assistance will, in the end, lessen worry. If family members and friends are offering to help, LET them. Many of our loved ones want so much to be of service. Sometimes giving them a job is as helpful for them as it is for you; they may feel helpless and powerless over this disease and need a mission to feel that they are positively contributing to your wellbeing.
Prepare for and engage in what doctors like to refer to as “pleasant activities”. This could be anything that puts a smile on your face and takes your mind off of your symptoms (journaling, listening to music, watching movies, catching up on your recreational reading, to name a few examples). Personally, I indulge in the guilty pleasure of watching tabloid TV specials. If there is a “Dateline” anywhere on television, I will find it. For some reason I am able to lose myself in someone else’s drama for a little while. Am I proud of this hobby? No! But it does the trick and helps me focus less on how the SLE is plaguing me hour to hour.
Be kind to yourself. Accepting that flares are a way of life is not defeat; it is simply acceptance. We must now take comfort in the little things we can do to be good to ourselves. The WORST thing you can do is beat yourself up about what could have been. You deserve gentleness. You deserve peace. This can start with you. Remind yourself, over and over if the need be, that you are valuable, important, cherished, and loved.
Acceptance does not mean that this disease has triumphed over us; it means that we must take a detour from our former plans and create a new life for ourselves. We must change our game-plan and brainstorm new and different ways to navigate life. Remember that you are not alone. There are others traveling this rocky terrain with you.
By Alexis P. Markowitz, M.A.