Rhonda Hodges

@rhondahodges | contributor
My daughter, Crystal Hodges, is a Contributing Editor for The Mighty. She sees my daily struggles with my illness and the illnesses of her dad. She encourages me to express my feelings through writing.
Rhonda Hodges

Lessons From My Daughter With a Facial Port-Wine Stain Birthmark

The first time I can recall seeing someone with a facial port-wine stain birthmark was when I was pregnant with my daughter, Crystal. I was in a department store shopping for baby supplies for this new little one who was going to be entering our world soon. When I saw the lady with the birthmark, I remember thinking, “I’m so thankful my 6-year-old daughter, Amanda, is healthy and doesn’t’ have anything like that.” Little did I know the little baby I was carrying would have the exact same birthmark. Now, I am so ashamed that I could not look past the birthmark to see the beautiful woman in the baby aisle. I’m certain she is loved and respected by many people and is making a difference in her circle of friends and family. When Crystal was born, we noticed a little bit of additional pinkness on the left side of her face. We didn’t think anything about it at first, but within a few hours, it became increasingly darker. The pediatrician who did her first baby check while in the hospital came in to see me when I was alone. His words were curt, sharp and his bedside manner was extremely in need of improvement. He only offered medical terminology to explain the birthmark and was not patient when I asked for further information. He said something to the affect of, “She has a birthmark, there’s nothing that can be done about it and you’ll have to deal with it.” He left the room and I never saw him again. It should go without saying that I looked for a different pediatrician for Crystal. Once I found a new pediatrician, we began talking about options to lighten her birthmark. Since this was over two decades ago, the information about port-wine stains was limited. The technology to treat these birthmarks was being developed, the specialists that we saw made it sound as though with just a few pulsed-dye laser treatments, her birthmark would barely be visible. In my excitement to see what she may look like without it, I asked a co-worker who worked with computers if he could digitally remove her birthmark, so I could see what she’d look like. Computer technology was quite different 26 years ago, so it took him a while to do it. He removed her birthmark, but she didn’t look like my baby. My initial request seemed harmless, but as I think about it today, I wonder, did I want her to look “normal” for me or for her? I am now ashamed I ever asked him to digitally remove the mark. As she grew, my husband and I had many conversations about how she would adapt to the world. Would she be able to “fit in?” Would she be accepted by her peers? Would she be withdrawn and anti-social? How are we going to manage her growing up “different” from other kids? I am now ashamed that we ever questioned her ability to fit into the world. If you know Crystal, she is loved by so many people and her social life is much better than mine! Our concerns and thoughts limited our own ability to see her full potential. I am so thankful we never expressed those thoughts to her. As parents, it was (and still is) our job to encourage our kids to dream and see their dreams come true. Today, Crystal’s motto is, “Making a difference with my difference.” And making a difference, she is! When Crystal was about 12 years old, someone told us about some makeup that a lot of burn patients and other port-wine stain bearers wear. It does a wonderful job to hide flaws and scars. I told her about it and she was excited to try it. I was too. Maybe a part of me wanted her to like it so I wouldn’t have to watch others stare at her when we went to the store or out in public (I am known to stare people down as they stare at her. Notice, that’s not in past tense. Crystal still catches me doing that today, even though she’s taller than me). She tried the makeup and was excited to show her “new look” to our extended family. On this day in the public, I was not looking to stare people down. I was more interested in how Crystal felt. She looked so different and I wasn’t sure I liked it. I was ashamed that I’d encouraged her to try it. She was comfortable in her skin, why couldn’t I be? I’m so glad she decided it was too much work, the makeup was too heavy, and she liked the way she looked without it. I wish my shame over how I felt melted away like the makeup did when she washed it off. But it didn’t. She was and is still today very comfortable in her own skin — her face is not flawed. Even through my thoughts and actions, Crystal has become a self-confident woman. She can do anything she sets her mind to accomplish. She is considerate, loves others and shows compassion in more ways than I can count. I believe God made her different so she can reach people and show them love when perhaps no one else does. She can show them that they, too, are beautifully made. She confidently tells people that we are all different. Some people just wear their difference on the outside for everyone to see. She is using her difference to make a difference in so many lives. I am blessed to be her mother and would not change her for the world. I was entrusted with this beautiful baby and have had the privileged to watch her grow into a beautiful woman. If you want to read more about Crystal’s story, visit her website:  www.crystalhodges.com. You’ll be able to read her blog and get to know her humor, fears, heartaches and dreams. You, too, will be encouraged by her difference. We want to hear your story. Become a Mighty contributor here .

Rhonda Hodges

For the Grandmas Grieving Their Grandbaby

Today, we are celebrating the third birthday of my second beautiful granddaughter. She brings so much joy and happiness to my life. I now understand what other grandparents meant when they said, “You can’t understand the joy a grandchild can bring to you until you have one of your own.” Or, “You’ll understand when you have a grandchild yourself.” Seeing her grow and thrive so quickly is absolutely thrilling. Hearing the word “grandma” brings happiness to my heart every time she says it. Happiness that can’t be explained by mere words. With this wonderful celebration, it made me realize I’d been missing for five years prior to her birth. Physically missing – no, but emotionally missing – partially. You’re probably wondering why, so let me explain. The year 2011 was a difficult one for my immediate family. My husband was hospitalized several times and during one hospitalization, the doctor used the words, “if he makes it.” Those words stung very deep. I’m extremely happy to say that he’s still with me today. But during this dark and scary time, we learned we were going to be first-time grandparents. Our daughter and her husband had been trying for a while, and we were excited to welcome this little one into our lives. It was a joy to announce it to our church family, and they rejoiced with us. Fast forward a couple of months. My husband’s health had improved a bit, my daughter and her husband had moved to California, and things were looking promising. We were getting ready to have a low-key celebration for Independence Day. I was busy doing laundry and other various house chores. My daughter called me into the living room where she was sitting and said, “Mom, I think I just peed my pants.” That’s odd for a grown woman to say, but occasionally, especially when a woman is pregnant, that does happen. She got up and took a shower, but she said, “It’s still dribbling down my leg.” It was at that point, we realized something was wrong. Since it had been 20 years since I’d had my last child, I couldn’t remember everything to consider. We called my sister who’d just had her first baby a few months earlier and told her what had happened. Her words burn in my memory: “Call your doctor, and get to the hospital.” It still didn’t dawn on me that this was potentially a serious issue. I’m not sure why. Maybe I was being optimistic. Maybe I was thinking  my daughter was wanting attention. Maybe I didn’t want to face the obvious. After talking to the doctor, we returned home with instructions to return if my daughter started running a fever or continued losing fluid. Sadly, the next day, July 4, she had to return to the hospital due to a fever. The next day and a half were heartbreaking. My daughter’s water had broken, and after several hours of labor, she gave birth to a beautiful baby girl, Ashley, but our baby girl would never take her first breathe, get her first tooth, take her first step, say her first words. So many other “firsts” would be missed. Because of this painful loss, a part of me went missing as well. I wasn’t sure what to do with my grandma status. Yes – I was a grandma. No – I couldn’t show the cute pictures, videos and share milestones of this precious baby and her parents. So how do I handle this status that doesn’t have a label? I found myself stepping away when a new baby was introduced. I was absent at baby showers. The one baby shower I attended was cut short on my part. The only reason I went was because there was no one else from our extended family in town. I felt obligated to representus. Once I felt my obligation had been met, I quietly slipped out and went home, tears streaming down my face the entire way home. The first time I held a baby was about five months after our loss. I was at a family reunion in Florida, and my cousin’s wife knew I was hurting when I saw new babies. On the last day, she handed a baby to me, and I couldn’t get away. She said, “Holding this baby will help heal you.” Even though I cried almost the entire time holding this little precious baby, my cousin was right. Holding a newborn helped this missing grandma’s healing. So, what did I do with the extra love I’d been getting ready to share? Remember that my sister had just had a baby a few months earlier? That baby girl got a lot of extra love. She was part of my healing. I wasn’t Grandma to her, but my mom (who is a wonderful grandma) shared this precious Rayna with me. I spoiled her, loved her, taught her to say important words like “diamonds” and “piggies.” We had so much fun – and still do. Children are a gift from God, and we need to cherish them as gifts. There were times when it was harder to be the aunt rather than the grandma. It felt as if those “firsts” we experienced with Rayna should have also been experienced with Ashley, and that hurt. With the birth of my second granddaughter, I have continued to heal and find my inner grandma! I love being a grandma. My Madison lights up when she sees me, and I light up when I see her. I love watching her grow, learn, play, be serious, explore and all the other things that she does. The grandma who was missing those few years has been found. She knows now whatall those grandma sayings mean. When my granddaughter comes to me to kiss the boo-boo or when she wants me to read to her or rock her, I’m there! When she spends thenight, it may wear me out, but I love waking up to her smiles and silliness. She’s such a happy kid, and I’m so glad I get to wear the “grandma” label as Madison’s grandma! Maybe you’re like me. Perhaps you’ve had that heartbreaking experience of losing a beautiful grandbaby. There will be times when you’ll cry while holding another child as you think about your grandbaby, and that’s OK. It’s part of healing for missing grandmas (and grandpas). Perhaps there’s someone in your circle who doesn’t have a grandma. Maybe you can be their “adopted” grandparent. Share their firsts as best you can. There are many ways to fill that hole that missing grandparents feel. Find what helps heal you, and share it with others who are experiencing the same pain our missing labels create. Helping others will help return joy to your life. If you or a loved one is affected by infant loss, you can find grieving resources at The Grief Toolbox . We want to hear your story. Become a Mighty contributor here . Getty image by NADOFOTOS

Rhonda Hodges

Struggling With Insomnia Due to Fibromyalgia

100, 99, 98, 97, 96 – Hey, I bet you know what I’m doing. Lying in bed, very tired and ready to go to sleep. At least my body is ready. My mind, on the other hand, has other things going on. Now, where was I? I don’t remember, I’ll just start over. 100, 99, 98, 97, 96, 95 – Maybe I should start at a lower number. I’ll try to start at 90 next time. But since I’m still awake, I’ll make a mental note of the things we need at the grocery store. I probably won’t remember them in the morning, but here goes anyway. Milk, eggs, flour, fruit – wait, I need to make banana bread with the bananas we didn’t eat this week. They’re way too ripe for me to just eat. I don’t know when I’ll feel like baking, so I’ll put them in the freezer tomorrow. OK, let me try this again. Starting at 90. 90, 89, 88, 87 – If I go to sleep now, I’ll have five hours before I need to get up to go to my appointment. Ugh, the dentist. Although I like my dentist, it’s just the dentist. What are they going to find this time? I brush like I’m supposed to, but it seems they always find something. Umm, trying again. 90, 89, 88, 97, 96 – Wait, that’s not right. I’m so tired I can’t even think straight to count sheep backwards. I guess I could try counting up, but that’s not worked in the past. Let me try the relaxation exercise I learned at the seminar. Lie still and envision a peaceful place like a meadow and a warm light is flooding over me as a healing hand. This healing light is working its way through my system calming my nerves. Yeah, that helps some. Oh, I wish it would really work on my neck and shoulders. That’s what has really been bothering me for the last month. Oops, now I’m tense again. I wonder what time it is now. I’ll bet an hour has passed. Nope, just a few minutes and I’m still wide awake. OK, one more time. 100, 99, 98, 97, 96, 95, uh 94, 93 – It might work this time. Oh man, why did I even think that? This counting thing isn’t working for me tonight. I should just get up and write the story that is keeping me awake. I’m sure others will be able to identify with this one. So, you know how it goes. You lie in bed tired and hurting from the day and can’t find a comfortable position. It takes a while, but one finally works. You lie there waiting for the sweet release of sleep, but it evades you. Why? During the day (if you’re like I am), ideas do not come easily. It’s a struggle to keep focused and get the chores done. But the minute you lie in bed, your mind goes in all directions with things you want to do. Perhaps you’ve seen or heard the comic where ideas are running from you during the day but running to you at night when you’re trying to sleep. That’s me. This is my definition of insomnia: I N eed S leep O r M y N erves I ncreasingly A che It’s not much fun and I know you agree with me. Whether your insomnia is a symptom of fibromyalgia like mine, depression, anxiety or other issues, it affects us all in similar ways. We grow weary in body, spirit, mind and emotion. How can we divert this weariness? I wish I had the answers. If I did, I wouldn’t be up in the middle of the night writing this article. Ha! However, as always, I’m learning how to deal with it in my own unique way. Like tonight, I figured I should just get up and write what was going through my head. It’s kind of therapeutic anyway. Some nights, I’ll get up and read or explore Pinterest for that next project I probably won’t actually do. Other nights, I talk to God and pray for my family, friends and the issues that are going on in the world. I remember positive things that happened throughout the day and things that brought a smile to my face. What ways can you find that peaceful sleep without tossing and turning? Write a letter to a friend, draw a picture of how you’re going to plant your garden, read a book, color or simply meditate on positive things in your life. It will probably take a few things to help you avoid insomnia but keep looking. If one doesn’t work, try another. You’ll be more refreshed and hopefully you will eventually overcome it on a regular basis. I hope this article found you sleeping well! I think I’ll try to get some zzzz’s now. Good morning. We want to hear your story. Become a Mighty contributor here. Getty Image by AndreyPopov

Rhonda Hodges

How Fibromyalgia Can Change Your Life

Hi, my name is fibromyalgia. I’m here to introduce myself and to let you know how I’m going to change your life. I want to be involved in your work life, social activities, family life, household responsibilities, rest time – every aspect of you. Initially, you won’t know that it’s me. You may think you’re just getting older and some things are changing naturally. However, you’ll soon find out that I affect every part of your life and things may change drastically. I want to get to know you – every fiber of your being. What makes you tick? What gets you excited? What keeps you involved with social activities? Who are your friends? Is your family supportive? Will your friends and family embrace me the way I’ve embraced and stuck to you? Let’s see, what can I learn about first? I think I’ll focus first on your work life. Have you noticed that after sitting at that desk working for a while, it’s a struggle to stand up and be steady? Yep – that’s me! The pain you feel is not just the effects of growing older, but the effects of me, your new buddy. What else is changing at work? Are you finding it harder to concentrate and follow all the changes going on in your department and business? Are you confused easily and unable to concentrate very well? These are all me interjecting myself into your life. Before long, you may find that you’re missing a lot of work and your performance is being questioned. If this happens, be sure to see your doctor and get the required notes to protect your job and/or your benefits. I hope you have the type of job that gives you those benefits. You’re probably going to need them. One thing I’ll change for sure is your sleeping habit. You’ll probably not feel very rested after a full night’s sleep. Even if you slept through the night, you’ll still feel tired. That’s me, again, poking my head into an area of your life that will affect all the other areas of your life. Along with the aches and pains, I bring fatigue with me. At first you may actually enjoy staying in bed longer, but after a while, you and I will have words about how lazy you feel. It’s not my intention to make you feel that way. I really just want to be noticed and fatigue really gets me noticed. I like to be the center of attention. If you’re going to be spending more time in the bed, do some things that may make it more pleasant. For example, get a few sets of your favorite soft sheets. Put a few easy to read books, word puzzles, coloring books and other easy things you enjoy by your bed. When you have the energy, do something you enjoy. Don’t forget to keep water by your bed. You’ll need to stay hydrated. Next, you may find that your social life is being messed up. I will interfere with your weekend plans whether they be hanging out with friends, going to church, playing on a sports team or just enjoying a weekend at the coast. If your friends accept me in your life, they’ll understand. They may even work around your new schedules to spend time with you. Those are some great friends you have! Be thankful for those types of friends because many people I live with tend to slowly lose contact with friends that aren’t understanding. You know, it may be helpful for you to tell them all about me and how your life is going to be affected. I know it’s embarrassing, but that may be the best piece of advice for you. Perhaps that’ll help your friends understand that it’s not the way you choose to be now and that you’ll fight through when you can. Your family is going to get to know me extremely well. There may be days you don’t see them even though you live in the same house. You’ll probably spend a day here and there in your room sleeping because just the thought of getting up is exhausting. If you can, let them know ahead of time when I’m bothering you more. Times when the weather is changing, cold or wet seems to be my favorite time to intrude. Make sure your family knows you love them and you’re not really trying to avoid them. Maybe on days when I leave you alone, you can work with your family to make meals ahead of time. Then all they need to do is warm food up. Of course, running out for hamburgers or tacos may be an excellent choice also. Try to keep fresh fruit and vegetables in the house so there are healthy options for not only us, but for the whole family. Some families I get to know are very supportive of each other. Unfortunately, not all are that way. Have an open discussion about who I am and the effects I have on you, so they fully understand me. If possible, see if there are in-person or online support groups for families of people I encounter. That may help them understand my full impact on your life. I love your house. We’ll be staying there a lot now. Sometimes it’ll seem like I keep you from doing what is necessary to keep it organized and clean. Have patience with yourself. Let’s get up together and do a little bit at a time. Dishes for example, can be done in steps. First, empty the dishwasher and put the clean ones away. Do you need to rest? Then do so! Next, start filling the dishwasher with dirty dishes. Take is slow and easy if you need to. If there are dishes that need to be washed by hand, let them soak in soap and water for a bit. Once you’re ready to get up and do a little more, they are easier to clean. Do the laundry the same way. Do the loads when your energy is high. It may take you a day or two, so plan to do the necessities first. Can you ask for help from family members? After all, it’s their clothes and dishes, too! When you accomplish something, do a celebration dance or simply look in the mirror and congratulate yourself. You are awesome! Even with me by your side every step of the way, you got some things done. Sometimes the best self-care involves encouraging yourself with positive thoughts and looks. Now that I think about it, make a list of all the things you love about yourself. Keep that list close by for those times you’re not really feeling that great about yourself. Keep a journal close by and acknowledge yourself and the things you accomplish on a daily basis. Maybe it’s just going from the bedroom to the living room to watch TV. Maybe it’s getting a shower and washing your hair. There will be those times that I’ll try to prevent you from even brushing your teeth. If you feel like that, get up and brush your teeth and write that down as an accomplishment. While you’re at the sink, look in the mirror and tell yourself “good job.” Remember, my name is fibromyalgia. Yours is not! You are simply someone who is learning to live with me. Some days will be better than others, that’s true. However, you are always a gift. You are always loved (even when you don’t feel like it). You struggle through to make your life and the life of your family the best you can and that is wonderful. Just as we try to speak uplifting words to our children that are learning (and sometime failing) to do new things, you are learning to live with a condition. You are not the condition. Find ways to keep those positive thoughts about yourself coming your way. After all, you are amazing! We want to hear your story. Become a Mighty contributor here. Getty Image by CentralITAlliance

Rhonda Hodges

How to Take Care of Yourself When You're a Caregiver

As a caregiver, many times I’ve noticed I set my needs aside to make sure my husband or daughter gets what they need. My husband has been disabled for about 11 years, and my daughter has had several ankle surgeries that prevented her from taking care of her everyday needs. So there have been times during these years that I’ve been caring for both at the same time. In addition, my mother has gone through breast cancer and emergency spinal surgery due to a fast-growing cancer. During her recovery, my sisters and I helped our dad take care of her. It was difficult for him to allow our help at first, but he soon realized he needed our help. I think it was at that point I realized  I’m quick to help take care of someone but forget I need to take care of me, too. My sisters and I were adamant that my dad allow us to help him because we could see he was beginning to be worn out. Caring for my mom 24/7 was too much. He wanted to do everything he could for her. After 56 years of marriage, (58 years as of this writing), it was hard for him to give in and let us help. Since she had spinal surgery, there were medications, braces, special exercises, assistance getting up and down and a plethora of other things to take care of. He would sleep in the bed next to her, and if she made any noise or slight movement, he was awake to tend to her. So even when he was resting, he wasn’t really resting. My sisters and I set up a schedule for one of us to spend the night every other night, so he could truly rest. We also made sure he was getting out of the house to meet others for coffee or simply go for a walk. One thing I’ve learned is vitamins are a must. As a caregiver, we must make sure our immune system is strong and that we are not deficient in any vitamins. Of course, the typical vitamins include those typically covered in a multi-vitamin. But that’s not the type of vitamin I’m talking about today. Recently, my daughter and I went to the coast for a week. It was a much-needed time of rest, relaxation and revitalization for me. I needed to reflect, meditate and think about how I want 2018 to be different than my last few years. My daughter made a post about how hard it was to leave the beautiful California coastline to go back home. Someone responded to her post by saying, “You look beautiful and refreshed. I think vitamin sea is having a good effect on you.” You guessed it – “Vitamin Sea” is the vitamin I’m talking about. Obviously, it isn’t an actual vitamin, but the comment made me think. As caregivers, we need to have some of that type of vitamin to restore and refresh ourselves. I know what you’re thinking. “But I’m a caregiver. How can I take time for myself like that? Who’s going to take care of my family member?” Those are both extremely good questions, but a very important question you need to think about is this: if you don’t take time to get some of that time away, how is your health going to be affected and how well will you be able to really care for your family? I have been a caregiver for approximately 11 years. My husband’s health began to deteriorate after working longer than the doctors advised him to work. In 2007, he was diagnosed with congestive heart failure, which is compounded with other medical problems he’s had for many years. Finally, in 2012 he medically retired from law enforcement. The reason he waited so long was to make sure his retirement income would be enough to sustain us. I can’t express how grateful I am for his dedication to our relationship and financial stability, but I am extremely grateful he has finally retired. His health has not improved, but I do believe he’s still with me today because he did retire. During these 11 years of caring for my husband, he has understood and actually encouraged me to take time for myself. He’s encouraged me to take a cruise with my mom, go across the country with our daughters and granddaughter as well as shorter trips to the coast. My “Vitamin Sea” has helped me be restored and able to come back home ready to continue helping him and taking care of his needs. Before my trips out of town, I prepare microwaveable meals for him. I also purchase easy-to-heat-up food. He is not completely reliant on my assistance at this point so food preparation, laundry, a full tank of gas and anything else I can do to make his time easier is done. Don’t get me wrong. I’m not fully comfortable leaving him for longer than a few days. Therefore, I confirm that friends and family will check in with him and I also make arrangements for his sister to come for a visit during that time. It’s good for them to see each other and good for me to get away. Let’s get back to your questions about how you can take the time you need for rest and relaxation. Maybe your “Vitamin Sea” isn’t an actual trip to the coast. Perhaps it’s simply an afternoon to get a manicure, pedicure or a massage. Maybe it’s taking time every day to go for a walk to clear your mind or to the gym to pound out some frustrations. If you are a full-time caregiver and someone must be with your loved one all the time, reach out to your friends, church and family for some help. Explain that you need some time to yourself. Even if those hours need to be split between several people, schedule that time for you. You are important to your loved one, and I’m pretty sure they want you around for a long time. I know not everyone can take days or weeks away from their family member to go on a cruise or the coast, but it is important for you to find what your “Vitamin Sea” is. Do you like to draw or write? What encourages you? What about dancing? Want to find a dance class and get exercise while having fun? Is there something you always wanted to do like start a business, take more classes or sell your items on Etsy? Do you have other ideas that help you relax and restore you physical and emotionally? Start or join a support group for caregivers. Share your ideas with them, and allow them to share their ideas with you. So, find your “Vitamin Sea.” Soak in the sun, sand and water. Take your vitamins so you can be the best caregiver you can be to the one you love, and show yourself some of that love as well. Your loved one will be able to tell a difference in you and will love you even more for taking the time you need. We want to hear your story. Become a Mighty contributor here . Photo by Ethan Robertson on Unsplash

Rhonda Hodges

What to Remember When You're Experiencing Fibromyalgia Fatigue

Yesterday was one of those days. I had so many things planned to get done, but my body had other plans. I could only get out of bed to use the bathroom and get a drink of water. Once those necessities were done, so was my body. My mind wanted to remain alert and try to get through the fatigue; however, even my mind was fatigued from the efforts. If you have fibromyalgia, you know the drill. Laundry needs to be done, bills need to be paid, rooms need to be organized, the house needs to be picked up, dinner needs to be prepared for the family and many other chores. Maybe not all in the same day, but hopefully some get done. But then it hits. You try to get out of bed and the moment you sit up, you realize nothing you planned to do was going to get done. For me, these are some of the most frustrating days. In addition to feeling crummy physically, I begin feeling emotionally beat up with the guilt. The guilt that laundry must wait another day or that spare bedroom and office are still a mess weigh on my mind. The worst guilt by far, though, is that I’m not taking care of my family. Even though my daughter is an adult and my husband can provide for himself if necessary, as a mom and wife, I still feel some responsibility to prepare meals, take care of the house and do the laundry. I know that part of my feelings about this is generational and younger generations may not feel this type of guilt – and that’s good. I’m thankful that household chores are now typically shared. As clarification, my husband does try to help around the house as best he can. He is also disabled and has trouble standing too long or walking too far. When he helps with the dishes, he typically will empty the dishwasher in stages and then fill it up in stages. What would take me about 15 to 20 minutes to do, can easily take him an hour or more. I appreciate the help he gives, but I don’t want him to risk falling to help. My daughter has a back injury that prevents her from lifting anything over five pounds right now and keeps her from being able to bend down very much. Her healing will be slow and steady. So now you know a bit of why they rely more on me than a typical family would. When I have fatigue days like yesterday, my family understands. I know I’m fortunate to have their understanding and patience, and wish that all fibromyalgia fatigue patients had the support that I have. I’ve learned over the past year to keep the following in mind: 1. The chores will probably still be there tomorrow. 2. My family can pitch in and help – even though they may not do it the way I do it, or it takes them longer. 3. It’s OK to keep the doors closed to those messy rooms. 4. I must have patience with myself! 5. Doing a little bit at a time still gets the job done. 6. Meals don’t have to be elaborate – which is good, since I’m not a chef. Sometimes breakfast is a great dinner! There are many more lessons I’ve learned, but the one thing I still work on after those fatigue days is the guilt. This is not the way I’d planned to be at 55, but as usual, plans change. I must adjust to this invader that has entered my life. I must continue to do my best on days that are good – but not over do it. That, too, is a lesson I am continually learning. If guilt has a grip on you by our common friend named “fatigue,” do not let that guilt bring you down. You are doing your best and that’s what’s important. If you do not have the support of your family, talk to them and make an alternate plan when those uninvited days come. Find either an online or an in-person support group to join. On these days, celebrate the little things such as getting up to get a drink of water or going to the bathroom. Celebrate brushing your teeth or your hair. Celebrate responding to those texts that seems to take all your energy. Find something to celebrate when those days show up. Let’s keep our fatigue days guilt-free! We want to hear your story. Become a Mighty contributor here . Gettyimage By: m-imagephotography