By: Tiffani Burnett-Velez
A fellow Young Urban Mom shares her story on raising children and running a household while battling CFIDS
I lived with Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) for many years before I even realized I had it.
All I knew was that I was extremely exhausted, to the point of feeling like I was fighting an eternal battle with the flu.
This made every little effort (and often still does) an event to be reckoned with. Nothing is easy when you have CFIDS – especially raising children and running a household. Often, something, many things, get neglected.
Dishes go unwashed, clothes get worn if they are “not too dirty”, school events get missed where parent participation is required. You stop making your children’s school lunches, and you start letting strangers step in and do what is natural for a mother to want to do.
I have learned some tips during my own battle with CFIDS to help mothers reconcile their never ending fatigue with parental duties.
- Take Care of Yourself First: Make certain that, no matter your obligations, you make time for yourself every day. This is infinitely important. Do not let that moment pass (and often all we have is a moment) to sleep in, read a passage from an inspiring book, drink a cup of coffee or herbal tea during nap time, sit on the porch to watch the sunrise or set. Whatever you do in life, no matter the amount of support you have, find a moment to sit in the closet or sit on the couch – just to rest alone with your thoughts. Women with CFIDS suffer every manner of fatigue at a much greater expense than most other women. It is important to realize that chronic disease is life-sapping. Take some of your life back with your own time.
- Shorten the Workload: Do not do everything. So many mothers believe absolutely everything is their job. This is the lie that makes any sort of illness that much worse, and it creates stress that slows down healing. Make capable children fold and put away their own clothes, clean their rooms, help wash the dishes, care for animals, vacuum, etc. Every member of a household should help to keep the home running. If you are a single parent, this can still apply. Even toddlers and husbands can be taught to help pick up toys. Insist on getting help from your family and friends when they use your home for living or entertaining. Remember, not everything is your job.
- Exercise: Studies have shown that exercise does help those with CFIDS. If you are in the middle of an especially virulent relapse of the disease, it is imperative that you speak with a medical professional about any exercise program. However, even just a brief walk with a balance aide or device, a trek up and down your stairs for five minutes, a stroll around your own backyard, etc. The fresh air will do wonders for your spirit. Take a moment to, at least, breath in the fresh air of an open window (even in the cold of winter) to awaken your senses a bit and make you feel somewhat human again.
- Don’t Feel Guilty Sleeping: I have had friends who are overweight, and they tell me that they always feel guilty when they eat in front of others, because it appears as though their eating habits are what got them in their predicament. But this is not always true. Metabolic disorders, surgeries, various medications can cause anyone to put on weight. The same applies to CFIDS. Sleeping too much is not the cause of your great need for more and more rest. Medical science has not truly discovered the cause of this disease. It appears to be part emotional stress, part adrenal fatigue, part immune system. But getting enough rest will make your day better – even if you do not feel like sleep replenishes. Not getting enough is worse, and those with CFIDS know this.
- Don’t Be Afraid to Tell Others Why You Suffer: Don’t be ashamed of CFIDS. You didn’t cause it. It is not your problem if others do not understand it, if they choose not to be educated about it, and if they expect you to get better on their schedule. Be who you are – CFIDS and all.
- Talk to Your Family and Friends: Explain to children, spouse, immediate family members, and close friends why you may not be able to attend all family functions, why you don’t want to answer the phone for every conversation, why you cannot participate in many physical activities. Let your world know that everything for you is energy-draining, and ask for their verbal, physical, and emotional support. Ignore the words of those who do not support you. Not everyone will understand, but making your needs clear is imperative for survival.
- Apply for SSDI: If you cannot work, take complete care of your children, cannot clean your own home or self, long lost your ability to complete even your favorite hobbies – apply for Social Security Disability. It’s available for people with Chronic Immune Dysfunction Syndrome. If you have worked enough in the past, then you have put money into the SSDI system, and it is there for you as an American citizen. Use it. You are disabled, and there is nothing wrong with such and admission. If others condemn you for your application of disability, ignore them as you would those who sneer with remarks such as, “I’m tired a lot. Can I get disability?” CFIDS is real, and not at all anything like the tired days that come with regular motherhood. Chronic medical fatigue is far different than the average American’s struggle with getting enough sleep. Don’t be bullied by those who do not understand your struggle. Walk away from such thoughts.
- Be Proud of What You Can Accomplish: I have spent so many years struggling with the fact that I have not completed my college education, though I have gone back more times than a graduate student. I have worried that I am just being lazy, or somehow stupid because I can’t figure out how to just get more energy. But CFIDS has put me in wheelchairs and makes me use my cane for walks of more than a few minutes – when I cannot take my large dog along as a stabilizer. She is hefty and provides an excellent balancer to my balance problems. But without her, I cannot go for more than a block without some sort of walking assistance. It saves my energy and keeps me from falling. When once I was ashamed to suffer from CFIDS, today, I am proud to be the person I have been created to be. CFIDS and all.
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