Seven Things That Blindsided Me When I Became Ill

Seven Things That Blindsided Me When I Became Ill

Through the Fog

As I imagine would be true for most people, chronic illness took me by surprise. Here’s seven ways in which fibromyalgia radically changed (overtook?) my life:

1. I was unprepared for the unrelenting fatigue

I was used to moving furniture around, taking my kids places, cooking, and cleaning my home. Chronic, unrelenting fatigue put an end to all of that. We live in a small house now, where the furniture pretty much stays where it was originally put. My children are grown and out on their own. My husband does the cooking, and we recently hired someone to do the cleaning. I just want to clarify that fatigue is not the same as being tired. When you’re tired, you get a nap or a good night’s sleep, and you’re re-energized. With fatigue, no matter how much sleep you get, there is no relief.

2. I did not anticipate the loneliness

I was used to a busy household with teenagers coming and going, the noise, and the comfort all of that brought to this mama. Now that it’s just my hubby and me, well, it gets really lonely for me and way too quiet when he’s at work. Friends are too busy with their own lives, and I understand that. They may think people come and hang out with me, but the truth is they don’t. I’m so thankful for my sister who comes and hangs out with me at least once a month.

3. Shopping has become an endurance sport

I always loved shopping, especially grocery shopping. Now on the days when I feel good enough to accompany my husband, I usually have to go sit in the car while he pays. My energy has once again been depleted. It can take hours and sometimes days to recuperate from a 30-minute shopping trip. I’m so thankful that my husband lovingly steps in and does what I can no longer do.

4. Showering needs perfect timing

I need to take a shower (when I’m able) at night, because it totally wipes me out. For most people, taking a shower wakes and energizes them. For me, it’s just the opposite. I become more exhausted.

5. An unmet need for community

I’m so thankful for the gift of social media. It has connected me to a community of amazing women, who are also chronically ill. It’s a community of mutual suffering, understanding, and compassion. Belonging to and facilitating groups on Facebook has given me an important lifeline of connection.

6. It lies to me

Most of the time I’m very aware of how ill I am, but on those good days, I question it. Am I really sick? Do I really have what they say? Maybe I’m getting better! Then the weather changes or stress enters the picture, and once again I’m reminded of the truth. I truly am sick. But I’m SO thankful for those good days.

7. Getting advice that’s not helpful

I know most people come from a place of caring when they make suggestions or give advice. But it’s usually not helpful, and can make me feel worse. Such as: maybe if you change the way you eat, exercise more, get out of the house more, get a job, you’ll feel better. They also want to know if you’re feeling better yet, not understanding that “chronic” means lifelong. It’s better to seek to understand than to give unsolicited advice.

I have been strengthened and challenged in ways I never could have anticipated. It has mellowed me and made me a more compassionate person.

Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.

79 comments

  1. Kim W. says:

    Robin,

    I am not even sure how to say how thankful I am for your articles. They portray this illness just as it is. Unrelenting yet silent. Thank you for sharing and putting into words what so many of us feel. I always feel better after reading one of your articles as I feel like I am not alone.

    Thank you.

  2. Mary Ann Meyers says:

    All of your comments in this post are right on point for me.

    Two surprise me: On that rare day I feel good, I ask myself, “Can this feeling good be real? I thought I was alone in this feeling.

    In terms of isolation, I had to actively turn down meeting with friends because I could not be reliable in making social dates–how would I feel that day? Who could say? I felt I could not be fair to the sharing experience of friendship.

    Your column is like still having a friend visiting or calling.

    Thank You,
    Mary Ann

    • Miriam says:

      I also have a chronic illness, and cannot predict whether I will feel up to going somewhere. I would be reluctant to schedule something with just one friend, but I think your friends would understand if you tell them “I’ll come if I can” to group activities. That way, two or more friends can go ahead without you, and you won’t feel like you ruined their plans. And if you are feeling well enough, even better!

      I bet you even have friends that would schedule one-on-one and not get upset if you had to cancel. But that may put too much stress on you to worry about it. You could also ask them to come visit you instead of going out, if that is something you could handle (or use that as a Plan B). You could have a pizza delivered, or ask your friend to pick something up. A lot of restaurants let you order take-out online, so you could have it all set up and paid for, so you don’t feel like you are putting your friend out. It’s also easy (& free) to pay a friend back online with PayPal.com or PayPal.Me (all you need is their email address).

      Maybe you could also try sending out a text or Facebook message on a good day, and ask if anyone is free that day. I’ve seen friends post spontaneous activities before. Even if they aren’t able to come spur-of-the-moment, at least they will know that you are thinking of them and want to spend time with them. If no one can hang out, you could make some cookie dough, and either have a family member drop cookies off at a friend’s, or shape & freeze the dough for your friend to pop in the oven for you when they come visit & you’re not up to doing things.

      It’s good for us to remember that our friends & family are busy (& often overwhelmed!) with their jobs/families/responsibilities/etc., so we need to reach out to maintain our relationships and let them know we love them!

  3. Steve says:

    All pretty accurate. I would add, no one gets the pain and bizarre symptoms except another fibie, no matter how many times you tell them. And how any exercise, like walking up stairs, results in pain.

    • Erin S. says:

      Exactly! No one gets it. They see you outwardly looking fine and assume you are. I don’t want to everyday list all my issues, “so, today my back, knees, and ankles hurt, by bones hurt, my joints hurt,I can’t think clearly and feel foggy headed, and I’m so fatigued I can’t keep my eyes open.” If I listed everyday how I felt that day I feel I sound like a complainer or that I’m looking for sympathy. However, people like my mother will complain I’m not working and why can’t you do this? I have to repeatedly state my issues. They haven’t changed and they’re not going to. The most I can hope for is that it doesn’t get worse!

      • Miriam says:

        I know what you mean! I have Lupus (& other chronic illnesses), and usually have multiple aches/pains/symptoms as well. I don’t even like to list them out to myself, because it just makes me feel even more tired! If I start telling all of them to someone else, I feel like an old person. I feel the same way about not wanting to complain and I try to stay positive.

        When people complain or don’t understand about us not working or doing things–what makes it worse is that we WISH we felt good enough to do them! We’d be happy to have enough energy to be able to accomplish something!

        My family tries to understand and are usually sympathetic. They do forget sometimes, and my mom has even said that she’s jealous that I can sleep whenever I want. (I had to quit my job last year.) I had to bite my tongue and tell myself not to let it hurt my feelings. I wanted to say that I’m jealous that she is able to go to work and take care of herself and others, and be independent; that often I get lots of sleep and still feel too drained to to anything. For a second, I even wanted to be mean, and ask if she’s also jealous of my dislocated fingers that hurt whenever I pick something up, and don’t work very well. But she has Diabetes and probably a little arthritis, and mild depression; and she’s often overwhelmed by her responsibilities. I know taking care of me adds to her burden and stress, and she didn’t mean to belittle my condition. She works hard to take care of me even when she is tired.

        Instead of reminding your mother verbally, maybe it would be easier to make a checklist of all your symptoms and slip it in a sheet protector, so you can check them off with a dry-erase marker. Then you can just show her the list or put it on your door or the fridge or something. You could put, “I wish I could help. Unfortunately, I’m feeling…” at the top and “Thanks for helping me and taking care of me!” at the bottom.

    • John Anderson says:

      Yep, I bought a lawn vacuum this weekend. It looks like a lawn mower excepts it sucks the leaves up.
      Want to know why?
      I am unable to do the physical chore of raking. Yes, I can drag a plastic rake across the grass. For about 30 minutes. Then struggle to bag that singular pile. Then I am done for the day. And too sore to do anything else for days.
      It used to take me about 5 hours (one afternoon) to do the entire yard. Now, it takes weeks.

      • caroline says:

        hijohn i know what your saying
        everything takes forever sometimes i push myself on only to end up going around with pain in my hips back and feet so bad im beside myself .even lying down im still pained and feel awful like i had runa marathon .its like you feel after a exerciseclass next day x100
        i now just get someone to cut the grass complete with leaves so they are cut up and go into the collection box /i used try and do this myself but is totally wipes me to cut the grass now spend the next two days in and out of bed .

  4. Denise Bault says:

    Great article! You should add one about the “friends” you lose and the family members who are clueless, despite your attempts at educating them…

  5. Sha'ula says:

    Awesome! You nailed it. Thank you so much for your blog. I helps me realize even after 30 years w these diseases that I am not alone and someone else truly TRULY understands! Keep up the fantastic work. These get me through rough days.

  6. Alysha says:

    Thanks Robin, you’ve described my life, especially number 6. Fibro is a tricky little bugger isn’t it? It really does make you question yourself. Look forward to your next post!

  7. Patricia McGhee says:

    You are so right in saying that people don’t understand how you really feel unless you have this terrible FB. I had it for many years & did
    not know what it was. Finally, I had an Allergy Dr. that knew what was making me hurt & so tired all the time. I am so grateful to him & still see him.
    I want to Thank You for telling people that have FB that they are not alone!! It is so good to read something that hits this FB on the head.
    God Bless You & may you have many Good Days!!

    • StevefromMa says:

      You know, I always feel a tiny bit better knowing other people have the same awful symptoms, at least you all understand and we are not alone.

      But Ihope all of our symptoms disappear.

  8. Monica says:

    I was surprised by how difficult it was to get doctors to believe me. I kept trying to figure out why they thought I was telling lies.

    • Patrice says:

      I’m with you here Monica. My doctor of 18 years never did believe I had fibro. I had to find a rheumatologist she could refer me to, who then diagnosed me. Even though she had the words of this doctor she still didn’t really believe me. Finally I have a new doctor who does believe in fibro. What an incredible relief it is to go in to see her her and not have her treat me horribly and with repect!!

  9. Heather says:

    Hi Robin!

    You said, “Most of the time I’m very aware of how ill I am, but on those good days, I question it. Am I really sick? Do I really have what they say? Maybe I’m getting better!”

    I go through this a lot. Sometimes I think maybe I’m getting better and then at the end of a work week (only 3 days outside of my home for me) I feel it– shopping too. But, I love grocery shopping so much I just can’t give it up no matter how bad I sometimes feel afterward.

    I track with you on a lot of other points too. Like showering! And sometimes hot water makes me feel worse. This is off the subject, but have you tried Matcha green tea? I recently started drinking this and it is a God-send.

    Many hugs to you!

    Heather

      • Heather says:

        Hi Robin!

        Well, I have only started drinking it this week, lol! My sister insisted that it has changed her life 🙂 So, my dad, who is concerned for my well-being, sent me a batch of Matcha. I discovered that it does give me energy and improves my mood. As you well know, with fibro, many things are not fool-proof or long-lasting. However, even on a temporary level, it’s well worth it for me. I have heard that it also boosts immunity and has a wealth of health benefits. I think for me, it will be best appreciated in my early to mid-afternoons when I am often most fatigued. If you don’t drink coffee, for sure, a great way for starting the day, You can google it and learn how it’s prepared or watch a YouTube video.

        Anyway! Just a little love to pass your way. Can’t hurt to try. I’m pretty much open to anything these days, lol!

        Heather

          • Halley says:

            There is a prescription med that has literally saved my life called Provigil. I started it about 4 months ago after my pharmacist told me about it and told me to ask my doctor about it. That day I had come in to the pharmacy to get meds refilled and broke down in tears when the pharmacist asked me how I was feeling. Even if I could get the pain under control for a few hours, the fatigue was still robbing me of any type of life and I’m only 33 years old (34 now????.) After talking with my doctor about it, he gave me a script for it. I feel like I actually have a fighting chance at a semi normal life now and I’m actually able to function and even have a little fun too. It doesn’t give me an overabundance of energy, wire me up or make me feel jittery. I don’t even really feel it “kick in”, I just start to feel like, what I would think, a normal person feels like in terms of energy. I’m not trying to push another prescription med on anyone or help deepen the pockets of these pharmaceutical companies anymore than they already are. I just want to share what has changed my life because I wouldn’t wish this on my worst enemy so I want everyone to know of anything that has helped me. I have Fibro and Mixed Connective Tissue Disease and I know all too well the suffering that comes with each. God bless and be with you all! Thank you for this wonderful article

  10. Gray says:

    Hi Robin, I read your writings most of the time. Although a lot of what I have read, is obviously in agreeance, as most of the symptoms are the same whoever and whatever we are.

    I know that ‘fibro’ is predominantly found in women all over the world, wherever they may be.

    My wife has had and still does have serious inoperable spinal problems, and I am her 24/7 carer. BTW, I am her male husband and I do the washing cleaning etc, oh yeah, and I have ‘fibro’. They always said I was one in a million!

      • Sha'ula says:

        Nope, again. Three in a million and so grateful everyday that we are together for the long haul. We are both 60. If not, I fear I would have long ago done myself in. It is so hard going it alone without a super support system. My heart goes out to those who do not have that. I have been there. It took much time and effort to cultivate the right group of people who understand. Hang in there. It just takes time to find fibie partners and friends.

        • Gray says:

          Well, this makes sense of the comradery that people in similar conditions tend to migrate together! Even if they are ‘x in a million’!
          My heart goes out to you both, I don’t know how I would be if I was alone, my wife & I are a great team, in the sense that she keeps me grounded & I do the physical stuff when I can. I am 55, & my wife is a spring chicken of 42 years of age, this month! 😉

  11. Erma Lopez says:

    I’d like to know how is it that you can still make lemonade with your fibromyalgia? And it says that you have found ways to make money from home…, would you like to share what you do, and how you do it. Because I have family members that would read this posting and would say “well if she can do it, then all fibromyalgia patients should be able to as well. I’m not a pessimist, but I like to say it like it is!!! Please let me know if I’m wrong on my comments.

    • Robin Dix says:

      Erma, I would never say you were wrong. When I do work, I work from my bed. I’ve been an entrepreneur for over 20 years and was diagnosed about 6 years ago. I enjoy direct sales, I have an Amazon affiliate store, I get paid to write. Please don’t hear me say that because I can or can’t do something, it’s a blanket statement for everyone with FMS. Gentle hugs ????????

  12. Sha'ula says:

    Agreed. Having CFS/Fibro for 30 plus years a positive attitude goes a long way, and there are ups and major downs with this. Some years I have felt almost normal (albeit I think I have forgotten what a true normal is). There have been years when I could barely lift my head off my pillow and could not work anywhere including from bed and I sobbed because of the constant pain. Currently most pain is under control and I can work virtually on computer from my bed. Please understand that your fibro is not my fibro because it changes every year, every month, every hour. It is an elusive disease that is so misunderstood. Being positive has helped me get through the roughest times. Hang in there.

    • StevefromMA says:

      Actually, my fibro pain changes every minute, though some familiar pains don’t leave. I don’t have a positive attitude anymore, just black humor that gets me through. My wife has heard every bad joke and comment about fibro, living, dying, you name it. I tell her to go on a trip by herself for a break but she won’t travel alone. I’d go a trip for a break if I could LOL!

    • Halley says:

      You are so right about that, my fibro isn’t everyone’s fibro and it does change year to year, month to month, week by week and day by day. I think a lot of us also have other health issues along with Fibro and even other autoimmune diseases that complicate the disease and therefore makes everyone’s experience so different. I was diagnosed with things caused by my autoimmune diseases before I even knew I had autoimmune diseases so many others could be suffering from other undiagnosed issues that cause their experience with Fibro to be more severe than another person with Fibro. I often don’t lead with my Fibro diagnosis when asked what is wrong with me because I have often been compared to others with Fibro that are able to continue working or that live a more active lifestyle than I’m able to. I don’t take Fibro lightly or think that it isn’t a serious illness, I just know that it’s so misunderstood and it’s easier for me to avoid the “well so and so has Fibro and they work and live a normal life” by leading off by saying I have Mixed Connective Tissue Disease. Since I have multiple autoimmune diseases (RA, Lupus, Fibro and Sjogrens), they call it MCTD and therefore that’s what I give as my diagnosis when asked instead of going through the list and people looking at me like I’m the 8th Wonder of the World or either a complete liar and hypochondriac. ????

  13. Vivia says:

    Thank you for the 7 surprises. I was in tears, finally finding someone else had the words to express what I was feeling – even things I didn’t know I was feeling ! Well over 30 years battling Fibro and osteo arthritis with both hips replaced and both shoulders. Often, my pains were sloughed off as the arthritis but I had no voice to get through what I felt. Self doubt followed me around and sat on my lap daily. Now I am not alone. My Husband read the article when I asked him to and he gets it. He has been my rock for 47 years.

  14. Maureen Rogers says:

    Robin, I just came across this article and your comments.It’s nice to know someone understands. Thank you Robin and I look forward to reading more from you. Maureen

  15. Susan Adams says:

    Thank You. You validated for me everything I am dealing with that I am not able to for myself. I am called a whiner, a hypochondriac and that I am mentally ill……….but you said it all.

  16. Trudy Abelson says:

    Robin, you definitely spoke for me in all seven instances. I was never high-energy, not even as a child, and always required a lot of sleep, as I do now. You made me feel that it’s OK to feel the way I do and that not every day it’s going to be a good day – so not to expect it. Thank you again for your help. ????

  17. Kelly Sievert says:

    Thank you for putting this into words!! I’m curious as to what type of work you did at home. Not who or where you worked for, just the type of work? Thank you!
    Kelly

  18. Maureen Doran says:

    Good morning. I have just come upon this web site and a weight has been lifted off. I am 73, diagnosed with ADD, clinical depression and fibro finally at age 50. I probably experienced all these as a child, can remember back to age 7. There is so much familiarity in all the comments that I cannot sort them all out right now.
    Something I have been pondering lately is an increase irritation to smells and others’ noise. These irritations have been taxing my love of neighbor.
    There is a small voice that is questioning, is this part of an autistic spectrum.
    I see my doc annually now and will present this but am wondering if this is merely another ‘old age’ factor creeping in. The affront to these senses is not as worrisome as my angry reactions.
    You are now in my ‘favorites’ forever. maureen

    • Robin Dix says:

      Hi Maureen! It’s not unusual to become very sensitive to lights, smells, sounds. Go easy on yourself and give grace to your neighbor. Perhaps explaining and having an open and honest conversation will help. ????

  19. Sarah Gilliland says:

    I am 50. Worked construction most of my life. Then the kids,grand kids,then…FM.. For 7 years I thought ,what are they talking about ,after my first diagnosis I went to 2 other dr to make sure the first was right..come to find about a year ago BAM! All 3 were correct. My FM exploded. Pain,fatigue,..etc.. I went and had a sleep apnea test,also started a HRT my HRT is a pellet the size of a grain of rice. The point of this is to say that with finding the HRT pellet ( bio.T) and having a sleep study done has helped me tremendously with the intensity of pain,and fatigue,and fog. When I forget that it’s time for my pellet (every4-5 months) or forget to wear my sleep device ( somni mouth piece) my day is severe. I am couch bound,and must take extra meds.
    Otherwise most of my days are 1/2-1/4 as painful,and tiring. I enjoy kayaking ( slow lazy river type) on these days I’m able to get my boat in and spend a few hours relaxing. Of course the next couple of days I am more tired but it is so worth it. I was hiking the Appalachian trail,doing really well 10 years ago. I took my gkids hiking for 2 nights we ended up staying for 3 because I was having difficulty at times being able to pick up one leg and put it in front of other,due to the severe burning pain in my legs ( not the typical I’m old,what the hell am I doing here pain) but incapacitated type pain. Which scared me thinking my teen grand daughters are going to have to carry my rear end off this hill. So I found that stopping every hour or so gave me about 30 minutes of slow methodical walk and I finished the hike. I FINISHED. It felt great!
    I truly believe,had I not went and had,sleep study,HRT, and a micro nutrient test ( I found I was low in several vitamin and nutrients) this test showed I was extremely low in magnesium,so I have added these to my diet. I take no alcohol,and do my best to eat healthy.
    I take lyrica and pain meds. I am just sharing the things that I found that helped with my pain and other symptoms. I still spend about 3 days a week plastered to the furniture BUT I am able to spend 4 not.

  20. i see what my life has become i have fibro, im 60 an no one understands how i feel even my dr. isnt sure if it is fibro but i know. my problem is how do i live, what am i going to do if my dr. releases me from my short term disability an i have to return to work. i know they are going to let me go. i am unable to do the work and have been told that fibro is not a condition to get ssdi so what will i do. no one is going to hire a person this sick. stress is a major problem in my life. i am alone no wife no one to help me pay bills. any helpful words

    • Robin Dix says:

      Charles, I’m so sorry! Ask your dr to refer you to a rheumatologist, they specialize in fibromyalgia. What kind of work were you doing? What do you consider to be your strengths? ????

  21. John Anderson says:

    I had a conversation with PCP 9not my rhuemotologist) one time during a flare up. I told her I wish I had cancers. She was aghast! Started talking on and on about how I shouldn’t wish for that. I interrupted her with one simple statement: “Doc, I can beat cancer. This crap will be forever. Cancer wouldn’t stand a “fornicating” chance after this “crap”.”

      • StevefromMA says:

        Afraid that’s true. Someone somewhere said FM isn’t a death sentence, it’s a life sentence. Unless they get better meds, it’s a very tough ride for me.

  22. MyaLech says:

    this is so true but you also need to add in the emotional side of things too… we suffer more than just pain and fatigue, there is also emotional pain not only for our own feelings but also that which others inflict upon us, my recent life is the perfect example…………………….. I guess the worse part for me is I recently broke up with the man I love because he is can not understand why I can not do a lot in one hit or why one “simple” chore can make me not be able to do anything else sometimes for hours and sometimes for days and constantly gets mad and uses profanities to try to make me do things and calls me names when I dont do what he wants when he wants and always says FM is just an excuse, he also calls our daughter lazy and good for nothing and other just as horrid names and blames me for her laziness and says I am going to ruin all of my kids lives, he doesnt physically abuse me, but treating me like a child and saying nasty hurtful things to me because of my FM causing me to be limited in what I can or can not do is worse than any physical pain the FM itself causes… the emotional pain when friends or family treat you like this can be just as real, draining and harmful as the disease itself, this is why some FM sufferers end up depressed and often become suicidal or become closed off and self harm, especially the ones who do not have people to support them or do not have access to community help or support groups.

  23. Anita Gyojin says:

    I am new to this group, and am finding the article and comments helpful. I’m 73, and not really an ‘old lady’ mentally, but, like others, I’ve been low-energy as long as I can remember, and have struggled with guilt all along, beating myself up for being lazy. I am still unclear about how much I can actually do because I’ve always erred on the side of resting/sitting around rather than pushing through the tiredness and fatigue. I was diagnosed with FM nearly 30 years ago, and take Gabapenin for it. Depression, anxiety, IBS, ADD, sleep apnea, arthritis, hypothyroidism, and now foot neuropathy are my comorbidities, and I take antidepressants, thyroid meds and use a CPAP. The fog is probably the most disturbing symptom. I’ve always valued mental sharpness and it hurts to see it going; I hate reaching into my mental dictionary for the next word to drop into a sentence and finding I’m no longer online. My husband is supportive, or wants to be, but he is high-functioning Asperger’s, which makes it hard for him to understand, and when there’s a miscommunication, which are frequent and sometimes explosive, I blame myself and get very depressed. He is large and loud, yells when frustrated, and can’t understand ‘why I’m doing stuff to him and then blaming him for it’. He claims I misread him and that I’ve sort of crushed his former cheerfulness out of him, and I feel pretty much the same; the truth is that we’ve made this mess together. I could tolerate this better if we were living in a clean and neat house, but though it’s a lovely house, neither of us has the energy to declutter or clean. We could afford to have it cleaned but it can’t be done until we sort through and move all the many boxes of stuff, and again, neither of us has the strength or willingness. I feel a bit like a prisoner of my FM and other pain, a sad marriage, a messy, dirty house, and of myself, of course. I do get out for volunteering, Yoga, political meetings, counseling and other things, but I don’t have any real friends outside these things, partly because I can’t invite anyone over, and because many people are put off by my husband’s non-stop talking (he’s brilliant and knowledgeable but can’t read cues that it’s somebody else’s turn). It’s a kind of guilt by association thing, here in the Midwest. This is all so difficult.

    • Robin Dix says:

      Anita, thanks so much for sharing! ???? Except for the CPAP and ADD, you and I have the same issues. May I make a couple of suggestions? Hire someone to come I and help you declutter, then hire someone to clean. Regarding your husband, perhaps you can come up with a cue, like tugging on your earlobe if he needs to stop talking for a bit ????

    • Tim Bossie says:

      Welcome to the community Anita! Battling with a chronic illness – and all the contributing effects and problems – definitely put a major strain on relationships. We are very sorry to hear that your marriage is not as good as it use to be. I hope that you are able to find some comfort in this community so please engage as often as you like. Many times for those with a chronic illness online friends are a blessing. 🙂

    • StevefromMA says:

      Being married is very tough and maybe an undiscussed aspect. After about 30 just annoying fibro years, mine got almost unbearable at 65, three years ago and I, too, feel like a prisoner (good word), now can barely walk, hate to go out to eat or movies, drive, dropped all travel plans to see the world. In two weeks I will probably start oxycodone, desperation med for me. Life just has gone downhill and marriage is greatly impacted. You have my sympathy, for sure.

      • Anita Gyojin says:

        Thank all of you for the encouraging words. On reflection, despite my marriage being difficult, I do feel grateful for my husband’s willingness to be helpful. FM sufferers whose spouses don’t even try to be supportive, such as those who blame the FM partner for their illness, and accuse them of laziness, should seek counseling. No one with this condition should ever be made to endure abuse, verbal or otherwise, because of and on top of their FM pain. My counselor is helping me not to blame myself for what I can’t get done.

    • Angela says:

      Hello Anita,
      I’m also new to the site. I was diagnosed about 10yrs ago by the only person who believed in me, shockingly from people I hear, my Doc!
      The fatigue is the worst for me and because I have/had physical hobbies, situational depression. My first hubby decided it was in my head and I just didn’t care about him and after 18yrs,the lack of support ended our relationship. The one I have now sounds familiar to what you describe at your house. Mine,for the most part, won’t let items leave the house once through the door lol.
      As always wonderful supportive suggestions given here. I’d like to add one more thing about the house. Yes have someone come help organize and clean. You shouldn’t have to have the strain on either of your mental health. You both may feel better when done.
      My 2 cents I wanted to say was never worry about how people will react to either the extra convo or anything else!
      At first I was suitably blushing by my guys never ending babble and stories as well as his lack of edit button. The big picture? He’s the most open honest person who is just trying to relate to others. It’s up to them to learn to deal with having a chat with a person like him…I say good luck!
      Mindfulness tip… when possible, do only one thing at a time =)

    • Em says:

      The “FOG” is terribly embarrassing. People think I have taken something and say unkind things. It doesn’t bother me like it once did. I do not even bother trying to explain. Others just don’t understand and they don’t even want to try. they have formed their own conclusions and best to allow them this privilege.
      Okay, bod is begging for the rice bag and maybe even some more pencil play-like a child I do not want to stop. Peter Pan Syndrome perhaps.
      Please excuse rambling-much preferable to ranting.

  24. John says:

    Another great article Robin. Thank you! I identify with all of it but I was particularly surprised to read “It lies to me”. I thought I was the only one who experiences that. On a good day, I will begin to think ‘Maybe I will remain in this state. And maybe now I can get back to my life!’ Four years of FM and I still fall for that every time. On good days, it’s easy to forget how bad it can get on a bad day.

    Another struggle of mine in addition to the physical issues is planning. I can’t plan anything without inserting the warning that I may not be able to follow through. And just when I think others understand, I find when I do have to cancel, most don’t get it and they will try to talk me into doing it anyway, as though I have a choice. Other friends and family, I avoid completely because I don’t even want them to know I have FM. I manage to present an engaged life on social media but the truth is, I am in bed most of the time.

    I am a male by the way. We get it too!

    • StevefromMA says:

      True for me also but infrequently, John, I get up and it’s not too bad and it’s straight down hill, sometimes slower, conning me also, sometimes faster. That is absolutely true about planning. My wife tries but still has trouble realizing I don’t want to see an old folk singer, hear an apparently interesting talk, etc. not worth the pain and I probably won’t want to go. One time recently I couldn’t meet someone at a movie at last minute, just didn’t show up, no way to contact. I first told him I’d had a family emergency, few weeks later the truth, was not a close friend and most people, rightly so, don’t want to hear about your pain or difficulty.

  25. Vivian Keel says:

    I have just re-read the 7 things… and again it helps to know how many of us are out there. I am often angry and frustrated that I feel so clumsy and sore. I fell flat on my face on my way to the drug store last week and there was noone to help me up. It was 10 minutes before I was able to flag someone down to help me up after I had struggled to at least get myself up to sitting. I am stiff and sore and angry that my life has come to this. Now I must gather myself and try some relaxation and begin again.

  26. Est says:

    The best and only good advice I have ever gotten came from other patients. Rest. Get a shower chair. Get a heated blanket. Forgive yourself.

  27. Angela says:

    Oh my goodness!!
    I find myself both laughing and crying at so many of these…
    I’m new to the site but in the first reading I used the word validated. It IS hard to explain to non sufferers! Even though i know better, i still hurt myself to my old expectation due to simple shame. You know”doesn’t SEEM like anything is wrong with ya” lol
    Then I shake it off and remember to be kind to myself, it’ll get done tomorrow. And I’ll figure out somehow why my old friends can’t understand what chronic is defined as! I’m not a teacher but I’m adarn good person so I’ll keep any new friends that came along, especially if they’ll help do my nails =)
    This is a wonderful site with not just insight in to dealing with my feelings but others.
    Fabulous ????

  28. Em says:

    I am not sure how I have missed this article. Your words are so mellow and soothing. I have found comfort and understanding here and even feel safe which is a huge statement coming from one who trusts so little.
    I so enjoy drawing and painting and do find solace here. I have come up with a way to work although not at all traditional-it works for me. Also enjoy writing.
    The “wind with a wolf’s head is howling at the door”. A line from Edna St. Vincent’s “Ballad of the Harp Weaver”. Her poem “The Scrub” holds so much meaning for me.
    Perhaps it is the weather or the coming of a New Year that has me nostalgic and wading about in maudlin mush. Not depressed. An inner peace and some past reflections.
    Blessings and Peace to all coming here. Thank you to all for sharing and for continuing to carry on-yes, I skipped the shower today. Just required too much effort and this is okay. Keeps my gas bill down…grin.

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