My tired is tired! Fatigue is one of the most difficult symptoms of my fibro. It’s what keeps me in bed, keeps my social visiting to a bare minimum, and well, it just keeps me from SO MUCH!
I enjoy working on my home business, blog, website, and groups. But as I’m working on things, my fatigue meter moves closer to the sign that says, “you are done, stop what you’re doing and turn on Netflix.” There are so many things I want to accomplish but I really need to listen to what my body is telling me. If I don’t, well, you know — I’ll pay the price.
I try to go grocery shopping with my husband even if I’m exhausted. He enjoys my company and it’s more enjoyable for both of us. It’s my job to push the cart, because I need it to help me get through the store. Maybe you’re like me and once you’re on your feet, you need to just keep moving. So, if hubby stops to look at something or talk to someone, I just keep slowly moving. Standing in place is just exhausting; is it the same for you? I know some of my friends use a stool in the kitchen to sit on while they cook. What shortcuts do you use to enable you to do the things you need to do?
I’m learning the art of just being still and quiet. I tend to fill up my moments with various things to keep me distracted. But I do my best thinking when I close my eyes and just be still. I keep a notepad nearby to write down things that come to my mind that I want to remember.
I’d love to crochet, knit, or do cross stitch, but my arms are in too much pain to allow for that. If you can do those, I encourage you to. There’s a sense of accomplishment in creating something beautiful. Perhaps you enjoy painting, writing, drawing, or some other art form. Do what you enjoy and bless others with the fruit of your labor.
It’s completely exhausting to go for a five-minute walk, take a quick shower, sit in a comfy chair for an hour or two, or carry on a long conversation.
What people don’t understand is that fatigue and being tired are two different animals. Tired is a result of working hard or coming to the end of your day. Getting a good nights sleep or taking a nap will make you feel refreshed and energized. With fatigue, you are running on empty all the time, like your gas tank is constantly leaking. Sleep is not refreshing and, for me anyway, I feel as tired when I awake as I was when I went to sleep.
What’s your tired meter reading?
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I have had Fibro and a host of other diseases for 25+ years. For the past 20 I’ve hurt 24/7/365 with no relief of pain. It’s enough to get anyone down but I keep trying to live this so called life I’m leading. To us in chronic pain there is nothing we can depend on to help us! I use a stool to cook when I can manage it. I use wheelchairs in stores and am not ashamed to do so including heated throw, heating pad, all kinds of rubs, a tens unit and many more. So to me it’s not really living a life it is existing!
Terry, I hear your pain and frustration ? Feel free to email me anytime, you can also join our supportive Facebook group: http://inspiteofmyillness.info
As I read your article I couldn’t help but think of how tightly I’ve hung on to my cart at the store or wondering if I had the strength to keep going or would end up leaving the store by stretcher. But I am determined to be strong enough to do the things I want to do. Maybe the time frame is much slower but I will do these things that I enjoy. Not every day is as difficult as the one I am going through. I will make memories with my kids. I want them to have something to remember me by other than laying on the couch watching tv. I know God has called each of us to do great things. Use the strength you have but be kind to yourself in the process. Think positively. Change the things you can change. Eat healthy. Exercise even if it is laying on the couch using progressive muscle relaxation. Use five minute increments when walking. Pray. Be spiritual. Love everyone and thank everyone for anything you can think of. Normal the positive. Today is a gift that’s why it is called the present.
Caroline, very well said, I completely agree!! Have a blessed day. Keep in mind that your kids would target have you on the sofa than not at all, perspective mom
My tank is WAY empty today. Did too much this weekend and did not listen to my body. Instead, I listened to my mind say, “Go do this, this needs to be done, don’t forget blah, blah, blah!” That’s the most important thing for me to remember…I just can’t do what I used to!
Denise, sometimes we just want to be who we were, even if only for a little while, even though we know we’ll pay a price. Take good care of yourself ?
Wow! A mirror of myself! Sometime my husband comments “you must be on a roll today” because I Ostwald him to the car with the cart. I tell him “no, it’s just if I slow down I’ll fall down and you’ll have to call the EMTs”. Thank God he understands!
I use to cross stitch….I’m going to try to do some again. We’ll see how it goes. I feel depressed not being able to be ME. But, there is no other choice now with other health issues that have now been added to my Fibro journey.
Terri, sounds like you’ve kept your sense of humor intact ? I used to enjoy cross-stitch as well
I think that should read “out walk”. ?
Sounds like me at Christmas. I kept making this cookie and that cookie, and on and on…..hubby finally put a halt to it. Never getting to the candy I wanted to do.
THANK GOD!!! After building our 2 traditional giant lasagnas for the family, the day after Christmas was a crash….what the heck did I do to myself day! (Plus a few days after that)
Terri, I think as women we tend to push ourselves even when we know we shouldn’t. Letting go of that need is a good step toward better self-care
I think that I feel in my mind I have to keep up with what my Mother did every Christmas. She and Dad always did so many cookies and candies for the family. When we would show up the table in the family room would be so full! It would be something everyone looked forward to seeing. It is something embedded in my brain it’s so hard not to try to “measure up”.
I know, my mom did the same, but there’s no way I can do that anymore. I let my husband do any baking ?
I feel like that often. Except I never do actually collapse. Somehow I just keep moving. However, there is no sense of pride or accomplishment, just anguish and exhaustion. Like we are in shock after a majorly traumatic event.
You ladies are very lucky to have such understanding husbands. My wife holds it against me that I’m “not manly enough” to do all the things that are stereotypically a man’s job. It even gets to the point where she withholds “affection”. Mind you, she is not the picture of health. Except everything that is wrong with her is 100% preventable, if she wanted to.
John, why not share the columns with your wife, it might increase her understanding and compassion
John, I think that most people don’t understand that men can have this disease also! Your wife needs to be educated about this disease and all that happens or can happen to a persons body. It is not just a woman’s disease! Sounds as if your wife needs a “mental adjustment”. There is no “man’s or woman’s job” in marriage. My husband has been so understanding and helpful since my diagnosis. Over the years we both are still learning the restrictions, effects, etc. of it. He has issues too that we have to take care of (diabetes, pacemaker, etc). We take care of each other! Your wife needs to get priorities straight!
I agree with you, John as I have Fibro plus many more processes and it’s hard when your close seat ally doesn’t believe you. I was married before now and my ex was always making fun of me or saying things like I didn’t hurt as bad as I acted! Thank goodness I divorced him and met a wonderful man whom treats me with respect and if I do not feel well he does what I can’t!
Hang in there and do show her the different posts and maybe if she sees them and reads them she will begin to understand what we go thru!
God Bless and I hope you’re doing well!
I had a car accident 3 and a half years ago causing whiplash injuries in my neck, shoulders and back and Fibromyalgia symptoms set in a few months later, adding to my pain. The nature of my injuries have made it difficult for me to sit or stand for long periods of time, and the only activity I can do for any duration is walk. It is one of the few times I actually feel energised which is saying a lot considering I don’t sleep well at all! The exercise is wonderful for my health and peace of mind, and makes me feel whole even when my body rebels and the inevitable flare-ups try to beat me down again. I am always amazed at my body’s endurance when we go for walks or hikes although I will usually pay for any longer trips later on!!! I understand that my experiences are much different than others and that things may change as I get older. I want to do what my body is allowing me to do now, just in case I am unable to in the future. I have bad days too, like everyone else, where I break down and cry because the pain is overwhelming, but when it’s good I am thankful and happy to be alive!
John, I know what it’s like to have an UNSUPPORTIVE spouse. Not only did mine not “get it,” he wasn’t really interested in learning anything about it. His loss. Seriously. I left him. Dropped 210 pounds of stress and haven’t looked back. (By the way, he still calls around once a month letting me know how much he misses me. I’ll bet he does!) I am truly better off without him than with him…although the struggle continues daily. I would try and help educate your wife. If that doesn’t work, life does go on! I would rather be with someone who has fibromyalgia than someone who doesn’t care to “get it!”
I agree with all you have said. Had a little giggle along the way. Whenever I stop still to talk I look longingly at the floor as a place to sit. I find having a shower and washing my hair so exhausting! I know that there are certain times of the day that I just have to push through and get things done because I know I’ll feel worse later. If I sleep during the day after 11am it’s even harder to sleep at night. I have a low dose sleeping medication to make sure I at least sleep reasonable well at night. Never feel refreshed though….
Denise, glad you had a giggle ? It always amazes how completely exhausting doing something as simple as taking a shower can be. Have an awesome day ?
Wow, am new to the group and have read a lot. In my head the logical side says you can do this you can do that. So, rather than listen I push through and wonder why I am in bed for days after…so then I say yes, I can do this and that, crafts, shower, etc…but I have to space it out, and make sure I have time. I am always amazed at how many people have this horrendous disease, and are still positive. FM started with me about 27 years ago. I pushed through, had kids, raised 12 of them, worked, travelled and in the last 5yrs things have started to worsen. I now ask for help more than before and am working toward not feeling guilty when I have to ask. I have amazing grandchildren who help with baking and vacuuming and in turn I teach them crocheting, embroidery, cross stitch, etc. which there parents don’t have time for. I am very greatful for those that understand and don’t judge me when I am laying down again and those who help me even when I don’t need it. Surround yourself with positive and love and living with this disease is just a bit easier
Welcome Becki!! I am impressed that you have done all that and raised 12 children!! You’re grandchildren are blessed to have you. I think guilt is one of the hardest things to let go of
I couldn’t get through my day without heating pads. I have found what I think is the best heating pad on the market for anyone with pain issues. It helps my aching fibro muscles, my arthritic pain and the soreness in my legs from mucular cramps, so I wanted to share with you all. It’s called Thermophore and it’s true moist heat. They are a little expensive, come in several sizes but are oh so soothing. I love them and hope they help someone else as much as they do me. You can find them on amazon or just google it.
Sara, thanks so much for sharing, I know it will be helpful to many ?
It’s mentally and emotionally exhausting pulling my storm cloud around everywhere I go…..always feeling that I have to explain to people close to me “what’s wrong with me today” or “what’s hurting right now” at the risk of being looked at as just a lazy person. At 40 yrs old my quality of life is as an elderly person most days. I’ve had the fibromyalgia for about five years now. The pain, depression and fatigue controls me… even all that being said..I want to be more hopeful…I want to count my blessings…so many people are dealing with much more tragic situations…everyone has their own cross to bear…this just happens to be mine… I need to gain more knowledge…I need to regain some control… I hate being such a “pitiful” person. I hate complaining and mopping around. I looooove good days!! I feel like a superhero when I get things done. ☺️
I get that, bad days are so tough! Have you ever thought about doing a gratitude journal? It’s good to look back on on those bad days when everything seems hopeless ?
I have had fibromyalgia for four years now. It is really been a blow to my system. I used to do stained glass and this Friday I am selling all of my material to my local Stained glass store. I don’t have the strength to cut the glass or grind the glass and it kills me not to be creative. My friend tells me to keep the stuff because maybe one day I’ll be able to do it again. But I never see that happening again. It also takes me every effort I have to take showers. I am exhausted after them. I have been on disability for a long time for something else, so usually I just watch TV and do nothing. It’s hard to even just stand and make a meal. I usually just opt for cereal. Since I don’t do much of anything, I don’t take too many showers ( also the showers hurt me because of the water hitting my nerves). I live in my pajamas (I do change them every day though) because the thought of even getting dressed is exhausting. I also wanted to let everybody know if they are interested that there is a store online, it is also in some states and countries called Cariloha. They sell sheets, towels, clothing, socks, etc. They are made out of 100% viscose bamboo. I have the sheets and the towels for right now. They are the softest sheets that I have ever felt. My skin does not hurt when I get into bed. And the towels you just need to touch your skin with them to dry off. No need for rubbing. They are priced a little on the high side, but to tell you the truth, they are so worth it for me.
Janet, thank you for sharing! I can really relate to the showers and I’m usually in my pj’s unless I’m going to an appointment. I’m going to check out that site, thanks so much for posting about it. I’m in bed 95% of the time, but I use that time to write and connect to others on social media…and of course watch tv