Making important decisions about your life is hard enough when you're healthy. When you have fibromyalgia and chronic fatigue syndrome, there's a permanent wrench in all of your plans.
I'm having to make a tough decision right now. For the past few years, my husband and I have been involved in an organization that has really meant a lot to us. Our involvement has made us steadily busier, and we've agreed for several months that after the organization's yearly convention (which just concluded), we'd scale down our involvement to a more manageable level.
However, now it's become clear to us that a working relationship between us and someone in a position of authority has become toxic. To do the jobs we want to do, we'd have to work closely with a person we don't trust and who has shown us incredible disrespect.
Some of my recent dealings with this person have been stressful enough to aggravate my fibromyalgia symptoms and I fear that any more episodes like it will threaten my remission. In fact, I had to spend a portion of the convention in a wheelchair because of the stress this person caused and the resulting lack of sleep/increase in pain.
The top priority in my life is maintaining my remission. I was going to say that maintaining my remission is second only to taking care of my children, but since my health is intertwined with my ability to do that, I have to say that my remission is number one. (I'm certainly not saying we can't be good parents when we're severely ill - we absolutely can be - but we all know that it's a lot easier when you're feeling better.)
Still, when I think about how far I need to pull back from the organization in order to minimize my contact with the toxic person, it breaks my heart. I want to do many of the jobs I did for the past year, but I can't. At this point, there's no one to replace me, which makes it even harder. I've made a lot of close friends there and I feel like I'm letting them down.
Putting myself and my family first makes it clear what I need to do. It doesn't make it easy.
I have to keep reminding myself that all of us, sick or healthy, should eliminate toxic people from our lives. If your food were poisoning you, you'd throw it out. With illnesses that are made so much worse by stress, we especially cannot afford to have people around who poison our environments. I have to trust that once I get some distance from the decision, the improvement in my health and my life will be worth it.
I went through a much worse time five years ago, when deciding whether to quit my high-stress job. At least this time, my decision won't mean losing 40% of my family's income! (In fact, I'll have more time to work and could very well benefit financially.) On top of financial considerations, leaving a job can mean giving up something you love and have poured your heart into, and feeling like you're leaving a piece of yourself behind. It also involves the loss of independence and guilt over how the lost income impacts the people closest to us.
What difficult lifestyle decisions have you had to face since you developed fibromyalgia or chronic fatigue syndrome? Did the decision help you improve your health and/or functionality? Did it make you happier? What helped you get through it? Leave your comments below!
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Thank you for your insightful post. It is really hard to accept the changes forced on a person when circumstances change such as an illness. Traditionally our family always came together at my house to celebrate all things festive and I loved it and coped well. Since the illness and persistent fatigue I can no longer cope with this arrangement. And although people were ok to change this scenario I felt I was letting every one down. I felt ashamed that I could no longer do the things I did before as though I wasn’t pulling my weight etc. With therapy I am learning to change this unhelpful thinking but it still impacts on my feelings of self worth and competence. No easy transition from capable to tired
Thank you for writing this. I enjoy your blog.
I had to make the difficult decision to allow my daughter, who has primary juvenile fibromyalgia, to withdraw from her our local public school, a school which she loved but which she could no longer physically tolerate. We had to give up the school for several reasons, part of which was, as you mentioned, a toxic environment of doctors and school administrators, all confident that they understood the situation (they did not), and each of whom had their own opinion of how best to manage it (they were clueless) and part of which was the sheer physical strain of getting up early (mornings are not good with fibro) and working day after day without breaks (she needs frequent days off) and the assault on her senses.
Good post this morning. Very insightful. I left my job when my fibro symptoms became unbearable about two years ago, and returned to work in a much smaller capacity eight months ago. my symptoms are slowly returning and I am afraid I may have to step away again, and it is frustrating because my income allows us to do things I enjoy that we cannot do if I don’t work. so for now I am pushing and hoping I can manage.
Think back to 5 years ago and the wrenching decision you made back then and then look at all the positives that came after you made that decision.
You know what you have to do, but you also need to realize that new things await you that are better than what you have now.
Stress is always our worst enemy. Never ever put your remission at risk.
When my first Fibro symptoms really started 8 years ago, I was serving as a pastor of a church in addition to my full time job. I was also raising 4 children. While everyone was supportive, I had to step out of ministry at that time. I needed to work full time to support my family, but I felt I was letting God down most of all. It was tough,.
However when I did step down, I could devote more time to taking care of myself, my family and my work. I also can do ministry anywhere as there are people in need. I have focused on what I needed to do. and one was my health. and my life has been blessed because of it.
I was proud of my work in real estate, it enabled us to buy a house for the first time. We are still in it and I am so grateful that with one good summer of work, we could afford it.
Now it’s hard not to contribute money to the family, and needing the kids to help us has been painful. I worry that they will love us less, be resentful and angry at times. They shouldn’t have to help us out financially, most of their friends do not. But we are not earning and my illness makes it hard for us to work as a couple, which was what we were good at.
Sometimes I even feel less valuable as a person and have to have a stiff talk with myself, straightening out my values. I would love to tell them, it’s not my fault, I didn’t choose to have this illness. Haven’t said it, yet. Today I am in a flare, flat on my back, no job could tolerate my sick days.
It would be so much better, will be, I hope, when fibromyalgia is considered a serious and debilitating sickness. It’s just not happening yet. You have made a serious difference in making us legitimate. We do suffer so much more than people can imagine. Thank you, Abby
Great post, the overall life changes have really hit me hard since my diagnosis in 2000. I loved my job as the Manufacturing Manager of a car parts facility however it was a large job that was very stressful. I took 2 months off in 2003 in hopes of recouping and getting back on track with my responsibilities at work however upon returning to work I was only able to do half days. 4 months later I was no longer working.
Between the loss of ‘what could have been’ and me having to learn who I was without my job… My personal life also took a hit because our future plans went up in smoke thanks my medications it makes it impossible for my husband and I to move where we wanted to move (Ontario has a great drug plan for those who need it even once your 65) and my illness limitations changed so many things.
I am still working on myself to accept the many changes and limitations in my life… However the wheelchair and walker still get me angry…
All I can do is keep working on my acceptance of what is and rewriting ‘the future plans’.
Adrienne, I hope your stressful situation gets resolved soon.
I was approximately half way through my training as a homebirth midwife when my illness knocked the wind out of me. I was just at the point where I would begin managing clients myself, under the supervision of my preceptor. That was my hearts purpose, my biggest passion, and my life’s calling. I stepped away, with many tears.
It feels as if the related losses come slowly. I continued to occasionally assist at births, and served as a doula for women who chose hospital settings. I stopped taking on clients, then slowly started referring even friends to other doula’s. I still attend 1-2 births a year, but it is agonizingly difficult with long hours, little sleep, and the physical stress of assisting a laboring woman. The recovery from one birth can take weeks. Some times I wonder if the feeding of my soul is worth the price on me and my family.
I began working in community health, helping the Dr’s manage the prenatal care for at risk women, but slowly even working full time, and then 30 hours, became too much. The emotional toll each day as I watched others do what I was created to do was too much. I now work in a non-medical non-profit organization for 20 hours a week, and some times I wish for disability (not working), but my wonderful team helps me pull through.
The losses that come with coping with this illness are profound. The process of learning to keep my hand down instead of volunteering for everything has been slow for me! I have to live a different life than I intended. darn fibro!
Great article! I’ve had to make these kinds of decisions before, and while they are never easy to make, I’ve always ended up feeling much better after letting go of toxic relationships. We have enough to deal with living in our own bodies, managing a chronic illness, and doing the many, many other things that are required of us. I’m glad to see that people are able to advocate for themselves and to leave these unnecessary situations and relationships behind. It’s an investment in our health to do so. Once again, good work.
This is a great topic. I’ve worked since I was 15 yrs old and finally had to admit that I needed to stay home and limit my stress level. I was in a constant flare and so exhausted that all I wanted to do every evening was sleep. It was so unfair to my 11 yr old daughter. She’s my last child left at home and I feel so guilty that I’m too tired or hurting to do anything with her. I left an amazing job as an admin assistant at an orthopedic surgeons office. It was the type of job I always wanted and I excelled. But after a nervous breakdown and several procedures, I finally had to make the decision. I feel so much better mentally, physically, and emotionally. The financial situation sucks right now, but a happy family life seems so much more important to me.
Well I have come to the conclusion that i’m not able to do the things i want to do.I have pity parties sometimes. I don’t know what i would do if it wasn’t for my family. My girls are all grown and families of their own , but they help me all the time.I feel so bad that they come here and do my housework I can no longer do anymore, My husband is retired now and that helps out a lot too. Bless his heart he cooks my breakfast for me every morning now. but at first they did not understand my illness, So I asked my doctor what i could do because nobody understands the pain cause they cann’t see it, He told me to get on the computer and print out what it is and I did . My husband read it and he said “Baby, you are nothing but a big ole pain”, with tears running down his cheeks, I knew then he understood. Thanks for all the stuff y’all post it really means a lot to me and me knowing I’m not going absolutely nuts!!!!! I can’t even be around a lot of people at times. so that has stopped me from going to church, but thank God for SBN on the Dish network , I feel like I’ve gone to an actual Church service!!!!
I enjoyed reading your article. I am in a very tough situation right now. My husband and I are getting a divorce and I have a very stressful job as a professor. I left my husband because he was having an affair and was emotional abusive towards me. He basically abandoned me when my fibro became worse after the birth of our daughter. The worst part about it all is that I became pregnant despite my horrible pain because he promised me he would be there for me. I know, stupid me. I can not leave my job because I need the income since I am a single parent. The job, for the most part, makes me miserable and it really is getting hard to find any positive about it anymore. I used to focus on teaching as my source of happiness, but I seem to have lost my passion for it. Teaching seems to really aggravate my symptoms. I devoted my life to this job and now I have no way to escape. Besides, my ex would never let me leave the area since we have joint custody. I truly wish I could escape this toxic situation, but it seems impossible. I always read advice from various sources that emphasize approaches to minimizing the pain of fibro, but people do not take into account individuals life myself, who are almost completely on their own while taking care of a young child (2 years old). For people like myself, there is very little social support.
Major changes in my life over the past 5 – 10 years especially. Had to leave nursing. My family is scattered over the world, but I cannot travel even in planes. Housekeeping chores are almost impossible, do not shop anymore. Use cart in grocery store, but then struggle to get it from the car to the kitchen. Used to walk a lot, cannot do that any more. Cannot do day trips like zoo or going to BBQs. No social life.
Am not able to put in a full day at work. Cannot stand in lines, or sit for long times eg in church. Because I look well to others I feel like a hypochondriac with nothing to validate how I feel. Fibromyalgia can only be diagnosed by a tender point exam. Symptoms come and go. So what I could do one day I may not be able to do it the next. I also have the strong sense that I am wasting my Dr’s time. Have too many complaints etc. Poor insurance coverage is inhibitory along with poor income. No real treatment. So frustrating. etc
Thank you for sharing your story, Adrienne. I think you are being wise, because if you do not care for yourself, I makes it so much harder to care for your family. From my standpoint, as a woman who has chosen the model of the Virtuous Woman in Proverbs 31 as my role model, you are choosing your family first. I believe this is my first service to God. God is on top, but my family is next.
So many of us that have FM have other health issues as well. If I start listing them, I feel I am going to bore someone or forget one. LOL. My health issues have kept me from one of the most important services in my church that God has given me — singing in worship. And my husband is a MInister of Music, but he understands that I have been so very sick the last few years, I could not go to church often, much less sing in the choir or sing a solo. The good thing is I think I am about to get to the point, I may regularly be able to get back to going to church and serving. It has been many baby steps for me, and I have made the decision to let go of the false guilt that used to flood my spirit, and make me more ill.
Furthermore, it is an exercise in futility to worry about what other people think. What they think is their business, and they may not even think what we imagine is in their minds. I could be wrong, but I think most woman care quite a lot about what others think of them. But they have not walked in our shoes, nor do they know all the stresses and complexities of our lives. There is only one person that totally understands, and that is God. Sometimes, I don’t even understand, but He does.
If anything, I have to say I have learned to have more compassion and be less judgmental. Unfortunately, we still have to deal with people that do not have a clue what our lives are really like. Chin up, Adrienne. I am so proud of you.
I know that this is true. Having worked for an extremely toxic individual for several years, this individual knew about my condition and used it to their advantage. This took its toll on me, eventually I lost my job. It took time for my body to heal. Then another issue presented itself through personal business dealings. That business ventured came to an end, which was followed by another issue which is still going on. All this in less than 2 years.
What I learned from these three situations is that I need to put myself first.
Releasing toxic relationships in our lives is a must, whether we have a chronic condition or not, it is not healthy for anyone.
One more thing, which I just forgot –ha, ha. Oh now I remember.
I remember driving home from work (teaching) , and I was thinking, “I feel like my body is dying.” I really did feel that way. Needless to say, I am not able to work outside the home. And it is only recently, I have been able to do more around the house, which I am thankful for. My husband’s happy too. Mama’s cooking again.
Lizzie, you are so right about toxic relationships. It’s not a matter of us carrying bitterness around; because you can still forgive someone, but choose not to be around that person. Some people suck all the energy out of you; and being around them is like irritating a scar. You may have healed, but being around some people brings thoughts and feelings back that are better left behind.
So many loses over the last 20yrs that are directly related to my RSD; my husband, the chance to have my own family, my job, financial, sports, friends, confidence, purpose – crazy major changes. Then, over the pain, trying to find your way, your new place in this world – it is not an easy journey.
I can unfortunately completely relate. Last year I had surgery on my foot which led me to having RSD. At that time I was a catering supervisor for West Point. I absolutely LOVED what I did. It was my dream career. However after being diagnosed with RSD I could no longer be on my feet 40 to 60hrs a week. I had to accept the fact that I could no longer have my career. I found another job (sitting @ a desk) w/in West Pt and am currently still there. Just recently I was diagnosed with Fibromyalgia and it has been a very long and debilitating process. My boss and co workers lack the understanding and compassion when it comes to me being sick. I was in the Hosp for 2 weeks, had a surgery and was out for another week. I used up all my sick and annual leave. I try my hardest to get myself and my 2 boys (1 of whom is autistic) up and out the door on time in the morning, but some mornings its just impossible. My boss is constantly on me about being on time and could careless about what I’m dealing with. I hate to let anyone down, and not be able to do the things that need to be done, whether its around the house, helping a friend, or @ work. All of this just creates more stress, which in turn creates more pain. I like to consider myself a strong person, but this illness is stronger than me. The worst part is the horrible fatigue. I just don’t know what to do anymore. I can’t quit my job because there is no way we could afford to live w/out my income. All I can do is pray that once we (my drs and i) get everything under control, that I will get to the pt where I go into remission. Thank you for giving me a place to express how I have been feeling. Good luck to all of you and I pray that one day Fibro will be understood as a REAL disability. (((HUGS))) to all! <3
Thank you for all of your comments – it always helps to know others understand and are dealing with similar issues. To Quinn – my heart goes out to you and other single moms dealing with this. My children are older now, so it’s at least less physically demanding, but in the beginning, it was all I could do to get through a day, or sometimes, an hour. I hope things will transition for you quickly and smoothly, and I hope you can find some support, at least online if not in your community. I know it seems like one more thing you don’t have enough time for, but it sounds like it could really help you. Best wishes to everyone.
As I sit here, my Mum and Dad who are in their late 70′s are visiting for 2 weeks to celebrate our 7 year old daughter’s 7th birthday. Mum is doing our washing and cleaning up in the kitchen. Dad has put the rubbish out. I’m battling my “should” feelings. I should be packing away the dishwasher, I should be doing the washing, I should have put out the rubbish, I should be looking after my parents instead of them looking after me! But my shoulders are aching, I’m coming down with a cold, I’m sick. I hate being sick. I’ve given up my job, my hopes of being an active parent doing things with my daughter rather than just watching as others run and jump with her, my intentions of keeping a clean and functioning home.
Ok, focus on the positive – at least I can get a good meal on the table at least once a day most days. At least I can be there with my daughter for her activities and her school functions most of the times she asks. At least I can pick her up each day and help her with her homework. At least I can type and write. At least I can choose to say no a lot of the time to things I used to say yes to and regret later. At least I’m having more good hours than bad hours. And at least I have some patience back again that allows me to be present for my family.
It’s hard to put yourself in no 1 place on the priority list, but if this condition has taught me anythig, it is to make my health no 1, and to accept the help of others whenever it is offered.
Thanks at least for that Fibro.
I have a 16 yo daughter and a 3 yo daughter. A year and a half ago I had to make the agonizing choice to let my baby live with my sister who has younger children. I had my baby when I was 35 and symptoms started appearing 8 mo later after I had a hysterectomy. Some people don’t understand the decision I had to make. For me it seemed obvious when I was in bed again another day and my younger daughter wanted to lie there with me rather than go play with my teen who was watching her for the umpteenth time.
3yo comes often too visit when I feel up to it and she knows mommy can’t pick her up. She knows I love her so very very much but I am sick.
Nine years ago, my husband and I finished the house we’d built from standing timber on up. For five years, I’d been a dynamo-running a sawmill, hauling huge stones from the pastures to create retaining walls, fish ponds, and flower beds, clinging to the steep roof in 90+ heat to help put on metal roofing, and so much more. All this, while working overtime as a hospital RN, to pay for as much of the housebuilding costs out of pocket as possible. I felt like superwoman. Not long after we moved in, I started having fatigue episodes, brain fog, unexplained pain, and serious depression. I thought it was the inevitable letdown of completing such a huge task. I sought help for the depression, but the pain, fog, and fatigue only got worse-especially after having had a brief loss of consciousness with a ladder-fall induced head injury. I had to cut back work hours, and spend considerable time in bed. My health continued to spiral downward, until I was barely working one day or two a week. I left my job of 13 years to try a full-time position at another hospital. Within six weeks, I was fired. I couldn’t remember, from one shift to the next, what I’d learned in orientation, and I found it increasinly difficult to make sound nursing decisions. It broke my heart, but I had to give up my nursing career, and go on disability. I still have frequent dreams of trying to return to work, but those dreams always end up the same-with me running like mad (usually on roller skates!) but unable to keep up. Three years later, I’m still trying to deal with my loss of identity and self esteem. I now have a new grandbaby (our first!) to help raise. We keep her three to four days a week when her mama works, but I’m starting to realize that even this is too much, and I may have to ask Vanessa to arrange alternate care for Tori once or twice a week. Acceptance of all I’ve had to let go, and continue to lose? When ya’ll figure out how that works, let me know, ‘K?
These stories are heartbreaking, and similar to my own. I often think of myself as having “failed”, but reading these stories makes me realize how incredibly strong we all are, even though we feel anything but. The sacrifices we have to make (careers, children/parenting, etc) would leave most people unable to cope, period. But we keep going, day after day, living with pain and fatigue 24/7, something no one can understand unless they’ve dealt with it themselves.
Thank you, Adrienne, for this forum you provide even though you are struggling yourself (and good luck with your current situation), and thanks to all of you, whether you’ve written or not, for continuing on. You’ve left me with the thought, “If they can do it, so can I”, and that is more important than many of you probably realize.
Peace.
I am going through the same agonizing decision. I have recently had to quit my job. My job was very stressful so I don’t miss that part of it. The part I am struggling with is the income. My husband has been the best support system I could ever have but to not contribute financially is a diiferent kind of stress I am dealing with.
I actually lost my remission 2 years ago because I was forced into a compromising position by a toxic, sabotaging underling. And I haven’t gotten it back.
At the time I felt that I couldn’t resign my position as president of the organization I was involved in until my term ended. Wrong choice.
Someone will step in or up. They may well not do as good a job as you have been doing in your very competent way. And you may have some grieving to do as you make this thoughtful and right choice.
In my case, after I stepped down and relinquished my role and involvement, others came to realize where the actual problems lay. I’ve just begun to become involved again and I will still take it easy.
Surprisingly, I didn’t miss my connections and the activity there that I had done well. The friendships that were real ones have been maintained outside the meetings and activities. And I’ve found other places that are not toxic to share similar interests and goals.
Wish I’d known then the risks I was taking with my health and gotten away from them sooner. pinhiller
I admire everyone who has had to reinvent themselves who have fibromyalgia. I am now attempting to re-enter the workforce after being approved for disability. I am learning new technology with computers and I will begin a college course after being out of school for 6 years. The adjustment has been tough, but there are also many blessings that have occurred in my life since being diagnosed. The hardest decision for me is the possibility of loosing a sibling’s support who is being influenced by another person. I am learning how to be more self sufficient and assertive with my needs. I can understand about dealing with stress and removing toxic persons from our lives. I want to wish all of you the best of luck with the new paths you have or will be taking with your lives. Please take care my friends.
My best advice is to file for disabilty right now and do so with an expert lawyer. They know the ropes. It takes 2 years so start now. Having a little income after a lifetime working and paying taxes! I relate to so many here. Understand what you feel. The hell of it is ,doctors don’t know what causes it. Nor do they know what to perscribe. This is some scary stuff,especially when pain meds stop working. Someone must figure this out. Did people have this codition a generation ago? Why is that? It is a ruff tow to row. If someone loves you enough to stay with you understand, you are truely blessed. I cant even write about all the neg things that have happend to me regarding FMS and CFS. I then contracted Lyme disease. Ten years ago and was tested 3 times using the western blot. Finally saw a scientist who found it immeadiately.he even showed the micro ticks eating me alive. Lyme is very illusive. Get disabilty now.
Judy
I own my own jewelry store. I have run it for the last 9 years by myself. I am a diamond setter and a goldsmith. The fibro diagnosis has rocked my world. I have hired two part time workers and a couple of goldsmiths do contract work for me. This winter my Dr. had me take 4 weeks off, for a medical leave. I took two more weeks at home. I sat and rested and came to terms with my fibro. ,up to that point. I am much better, but I can only work 12 hours a week in my store. I cannot do any bench work. If I do one job, my fibro hurts. I am in the process of morphing a couple of my jewelry lines into money makers for me. If that works I will have a retirement, maybe. Change is the only constant in life. Change is not always what we would like it to be. But, it is all we,ve got to work with.
This has always been my big question since I was diagnosed last year. How will I know when to get quit my job? I work full time as a crisis worker, very stressful job, but I love it. I know it is impacting my health, I spend my weekends recovering to go back to work on Monday. I don’t see my family & friends as much as I use to because I’m too tired. It’s tough. I’m now taking Savella 100mg twice a day. It helps some, still have to take tramadol a couple of times a week but at least I’m not having to take it daily just to get out of bed. Any experiences shared would be most appreciated! Thanks!
Having CFIDS forced me to quit working. Now my partner has to take money out of his IRAs once a year to pay down our debts. It’s less expensive than credit cards when you can’t pay them off all at once. Neither of us was ever in credit card debt before, and now it is a way of life.
In the US, you can go back to work making about $700 a month without losing your SSD income. SSD income is so low I don’t have to pay taxes (sounds great, but there’s no way to live on it either). If I were able to make $700 a month I would wind up having a yearly taxable income, in which SSD would be included! There would be no point to working!
Also, my partner of 22 years and I cannot get married because then our income would be combined and we would pay about $5,000 a year in income tax (estimate of two accountants). No, you can’t get out of that one by filing separately!
I was highly identified with my work (I was a psychiatric social worker running a day treatment program for drug addicts with mental illness). It took years of help from my partner in order to begin to disengage from that — we are not our jobs, our roles, or anything else we “do” in life. We are living individuals and we have a right to be here whether we are sick or well.
The trouble is, I don’t know who I am now. I don’t have a role, a “project,” a “direction,” beloved hobbies that I am devoted to…. I am in therapy and reading books that may help, but who knows.
This is a HUGE question for me right now because my mom died about 16 months ago but up until a couple months ago I was too busy dealing with various health crises to be able to get past the immediate situation. But now I’m not in a health crisis and I’m trying to sort through a whole slew of things, including how I stand with my various health issues now, how I stand with my brothers, who would be my closest family members (and who happen to live about 3,000 miles away in separate corners of the country – between us we have the NW, SE and NE corners covered), and what I’m going to make of my life now.
I’m really feeling lonely because I hardly know anyone here. I have some projects I need to work on that will require extensive computer time, but otherwise it’s hard for me to know where to start. I moved down here for work in 2006 and then promptly got sick and since then I’ve developed a whole littany of conditions. I’m originally from Seattle, but the thing about moving back there would be that the one thing that for sure gives me fibro fog is cold rainy day (cold meaning about 60 degrees and colder). I can get fibrofog so bad that it’s like temporary dementia, and that’s how I explain it to people.
So here I sit in a very nice two-bedroom condo in a 24/7 gated with a live guard community with a balcony overlooking a lake, but I’m terribly lonely. It’s really hard to make decisions. I’m not sure if I made the right one, but I hate that fibrofog too.
As a former military medic, I had promised my Mum that I would always take care of her & not put her in a nursing home. 4 1/2yrs ago I was diagnosed with Fibromyalgia, and getting progressively worse , unfortunately. January 23, 2010, My Mum had a stroke & ended up on dialysis (both due to diabetes & high blood pressure) within 2 days, and was hospitalized for 2 1/2weeks. She couldn’t walk or stand on her own, so my Dad & I decided to send her to a nursing home for a few weeks for rehab. She gave up on rehab after a week–she hated being in a nursing home & thought that we’d bring her home anyway. My Dad was working 12-14 hours a day & at the time I didn’t have the meds & control over my FM, so we couldn’t care for her at home. Couldn’t afford to bring in help–even with health insurance. My Mum & I went from being incredibly close to her hating me & blaming me for her being “stuck” in a nursing home. She passed away a year to the day of her stroke, she still hated me, & I’ve tried not to blame/hate myself for not being able to keep my promise of taking care of her rather than her ending up in a nursing home. So, my Fibromyalgia has cost me in ways I never expected.
In many cases people with chronic illness are not free to eliminate people from their lives, because they are financially dependent.
Conversely, we may lose social or financial support from family and friends who don’t understand our illness, or even take it personally that we do not have the physical and mental energy to stay in touch. Or people in our lives may not understand why we “are always late, depressed, moody, irritable…”
But if we are free to do so, I think it’s important to control the environment we live in, to make it as healthy as possible. I’m a big fan of being somewhat open about why, not making judgements so much as addressing the expectations or actions of the person involved and how they affected me. Key words: if possible!
There is much wisdom in this essay. I especially appreciate your understanding that leaving a job is not just a financial decision – you describe it very well with “giving up something you love and have poured your heart into, and feeling like you’re leaving a piece of yourself behind”. Also it can feel like failure, when you haven’t accomplished all you wished you could in that job. Thanks as always for writing so well about these issues.
All I can say is WOW WOW WOW!!! I am sitting here crying because so many of you are exactly where I have been for over 15 years now. I had to quit working in the mid 1990s because of the overwhelming fatigue and pain. I did go into remission and was able to work part time until being laid off in April 2010. I collected unemployment until April 2011 when my husband and I retired and moved to Florida. I did pretty well here for the first 6 months, then got into a very stressful situation with a neighbor and a family member. That situation has pushed me back into some fatigue and lots of pain. I am struggling now to get past this situation. I have been able to separate from it and that should help. Thanks to those who have shared your stories…..it is sad, but helpful to know that others are in the same boat and someone out there understands.
A number of years ago my dear son said “That is all in your head, isn’t it? It broke my heart, but it is what it is. I can only hope that he never has to understand fully because of suffering himself.
Hi, I am also crying about all I’ve read. It is so incredible to read about such life shattering suffering. I had a very toxic principal at the school I teach kindergarten. He used lies and giving me the kids that were so needy (needing much discipline) while the other teachers had the parents who helped and took care of their children.(bathing them, loving them by reading to them, etc.). My daughter came to see my class and said “these are lil “rag muffins”. I was sad that she noticed but it was obvious! Year after year I had this type of class. I loved them and taught them over and above what I could. All of the sadness and dispair most of these kids were in broke my heart. My boss and lack of confidence in him made me fill inadequate. I felt my health decline to the point where I slept all weekend to get up and give all I could to my sweeties. I am glad to say that prayers were answered and the principal and several others were moved to other buildings! I still have the “rag muffins”. But my health is improving every time one of them tells me they love me. I love them and pray for them daiily. I just hope I can last a few more years. I am blessed! Hugs and prayers to you all. We have a long journey with fibro, but blessings can still come from your “rag muffins”!
To Mary: Making the decision to leave my career because of my illness was one of the toughest in my life. I was 55 & living with this condition for over three years when I finally called it quits. I had worked full-time since I was 23 years old & truly enjoyed work. Like many others, I suffer from co-morbid conditions; in my case the other monster is osteoarthritis. The combination is brutal. From the onset of my symptoms, I knew I had something that was not only debilitating but would be life altering as well. Like many, I visited several doctors before getting the dreadful diagnosis. With each visit, I requested the doctor’s notes be mailed to me. In other words, I was getting my ducks in order knowing that I would eventually be applying for SSDI.
Over the years, I was very conservative with my finances & as a result, have a comfortable savings. Although I wasn’t interested in drawing on these monies at this time, I was prepared to do so in the event that my application for SSDI could take a long time.
I was one of the “lucky” ones as I was awarded SSDI on my initial application. I applied in July & was awarded the folllowing October. I attribute this to: my presentation of full documentation from numerous doctors over a three year time period; my thorough & efficient manner in completing all requested information in a timely manner; my age.
I have accepted the hand life has dealt me however I would much rather be healthy & working. My new “job” consists of managing my condition. I use the warm water therapeutic pool at the gym daily. I walk as much as I can tolerate & do stretching & light weight training exercises on a daily basis as well. I keep my weight low & eat a very nutritious diet.
You will know when it’s time to call it “quits.” The decision is huge & it won’t take away the pain & fatique but it will allow you to pace at a level that is crucial to our needs.
Good luck!
Big hugs to all, a lot of stories are very heartwrenching indeed! I feel as if there is always someone worse off than I and it is true since I am not a single mother. I too have to keep working in a extremely stressful job as a bus driver in the big city in Ontario. Sometimes, I feel anxious that I will be fired due to all the time I have taken off with the fibromyalgia and other ailments that I must endure. Fortunately, we have a union so if it ever came to that, I think they would help me but it is stressful all the same. I keep praying & hoping that there will one day be a cure for these tortuous diseases. In the meantime, I do the best I can by getting all the sleep I can which in itself is a huge job! LOL! I try any and all supplements, medications and crazy fads I hear about just to see if it would work thats why I just LOVE this website of Adrienne’s, she’s AWESOME just for sharing and giving us all a place to vent and find people who understand. I know it sounds desparate. Anyways, we are all survivors and we must keep up the good fight until a real good solution comes along. Keep strong all my fellow fibromites, hope is all we got!
My doctor has me on Tramdol 2 three times a day, Gavapentin 3 times a day, skelaxin 3 times a day,requip for restless leg, thyroid meds. I recently changed to a female doctor, hopeing she would understand, She does not think CFS is real. she checked me for menoupause because I got so frustrated when she told me I needed to be on Anti depressents. She put me on Lexapro. What a nightmare.
I have been in bed and a zombie for 10 days. I stopped takeing the 10mg now I am having hot & cold flashes. My husband i s great he is
supporting me in everyway. He loves to go out and dress me up but I an never up to it anymore. I am so sad to dissapoint him all the time. My work is not stressful but somedays I wish I could just stay in bed.
Living with CFS & fibro is very difficult. I will keep fighting.
After reading all these comments, I feel such empathy for u all! Im a fellow sufferer of fibromyalgia along with osteoarthritis, thyroid disease, depression, etc. I had to give up working also. I used to do nursing but made a few mistakes cuz of memory issues & felt I better quit before I hurt someone. It took me four years to get disability. I lived on $200 per month for 2 years. Had to separate from my husband cuz he lost his job & couldn’t pay the rent. There is so much more that happened but, there’s no use in rehashing the past. It took me a long time to accept my lot in life. I was diagnosed in 1998 & it’s been downhill ever since. Now, here I sit cuz for the past 2 days I haven’t been able to walk. I have a sharp pain that goes dowm my left leg & I can’t stand up straight. I just pray that I’ll be able to walk soon. I can’t afford to go to urgent care cuz I don’t have the $$ for the copay. Fibromyalgia & other chronic pain isn’t for the faint of heart. I hope there will be some kind of breakthrough for us soon. Thank u for this site!!!
Making these decisions are so difficult. I think you always have to do what’s better for your self. It always trickles down.
I was a psychotherapist. I had to give up my practice as well as working with people loving with AIDS. My brother died of AIDS. So I felt like I let my brother down. I’ve had this for what seems like for ever, at least 15 years. There has to be something we can do?
Thank you for a great post. I recently had to do the same thing for the same reason and sometimes I still feel guilty about it. I have to remind myself that I can not be involved in the organization for any reason as long as those toxic people remain there. It is just not good for me. Congratulations on making that decision and taking care of yourself.
I have always struggled with my health in one way or another and since the age of 10yrs old I had been diagnosed with all the associated conditions of Fibromyalgia and CFS, But it wasn’t until 28yrs old that I was diagnosed with Fibromyalgia and was diagnosed with narcolepsy which ruled out to be CFS at age 24. Anyways, It is nice to finally know what the heck is going on with my body and health and to have diagnoses but I still am unhappy with the healthcare I get and all of my doctors telling me that I have to live in pain and fatigue and there is not much they can do. I fell down a staircase at 28yrs old and hurt my low back (si joint dysfunction, 6bulging discs, a disc protrusion, an anteolisthesis, etc.) and my life has never been the same. It was 2months after that I was diagnosed with Fibromyalgia and I am now 30 and haven’t worked since and have been put on an FCE which states by doctors that I can not work fulltime. So my disability case is still pending after 1yr. I used to manage womens fashion clothing stores and model part time and was in great shape and in the gym regularly. I also had a great social life full of fun but now I find myself a homebody because I never feel well enough to do any of those things anymore. I pray that I can get my energy back and learn how to cope and deal with my life living with Fibromyalgia and CFS. I pray that God may heal us all and improve all of our lives whom live with any chronic illness.
I am always researching both conditions for any insight on how to deal with them, or improve them, So any suggestions or advice I would appreciate greatly because I have not quite got to the stage of acceptance or learning how to live like this happily!! thanks for listening..
Hi everyone!
Reading all the blogs, it seems that their are still alot of people out there suffering. I wanted to tell the group something that happened to me recently. I have suffered from FM for about 4 years now. Missng work, not able to keep up at home, and a husband that really doesn’t get it. He thinks if I exercise all the time, I will feel better. But I actually feel worse. I really try, but its hard. I found something interesting. I have been on Cymbalta and Tramadol for a long time. It really never made the pain subside, but I take it as the doctor recommends. Last week I became very sick, and it came on super sudden. I woke up from an afternoon nap (which I never take), and just like that I started to sweat, got light headed, and then ran to the bathroom and threw up! My side was hurting, and was like a constant tooth ache. I ended up going to the emergency room, and had a CT scan. They found a large kidney stone 6mm, which they said I would not be able to pass on my own. So surgery was schedule to remove on Friday. The got it out, and I feel much better now. The odd thing is — the swelling in my legs went down. In the past 4 years no one could even touch my legs, as I would be in pain. Now I can squeeze them and it doesn’t even hurt ! My stomach has been going down – no more bloat. And amazingly — my body is not hurting anymore. I am not saying the FM is totally gone, but I have been more mobile than I have been in years. If you can, have a CT scan of your Liver and Kidneys… I think if your body (Kidneys) are not processing fluids or food correctly, it could be why our bodies are in so much pain. I am going to track my pain levels for the next month or so. I have also been able to start doing Yoga again – my husband is doing it with me for the past 3 days – and I have more stamina then him. I hope my progess continues. Have a great Holiday weekend all ! Carol
I was on Fentanyl Patch 100mg, Percocet and Gabapentin (300 MG 2x per day) and had no energy, constant headaches and pain. I was scared of being addicted to the opiates and I cannot take NSAIDS due to gastric bypass. I changed doctors and asked if there was another way to control the pain. He changed my medication to Saboxin and increased the Gabapentin to 300 mg 5X per day. I feel so much better. I have very little pain and more energy than I have had for years. I also sleep better and my mind is clearer. I hope this helps some one else
Probably the hardest decision I’ve had to make is my livins location. I’m on disability/SSDI and the one sure thing that definitely leads to me going into terrible fibrofog is cold wet weather, and by cold I mean about 60 degrees F and colder. That seems to be the trend for me, at least historically. So, while it would be nice to live in Seattle around people I know and grew up around, I would be faced with that kind of fibrofog a good part of the year. And by fibrofog, I mean the kind the can be confused with dementia by the casual observer.
So, not wanting to experience that kind of fibrofog, I’ve opted to live in the city where I was when I first got sick, where I had just started a new job they’d brought me down here from Washington, DC for. Since I’ve been sick the whole time I really don’t have much of a support network.
Now both of my parents have died and me and my siblings are more or less estranged from each other, so I feel very much alone.
So in all this fibromyalgia has played a significant role in my lifestyle choices. Right now I have a nice condo that is nicely set up and is well suited for my health needs, but socially I feel like I’m living as a hermit or something.
Thanks for all the courage you have shown in how you are living your lives. I too have struggled with FMS and CFS. Most of my life, I worked, put myself through college and became a nurse and then a psychologist. Then, my mother became very ill 6 years ago and I cared for her. I tried to provide the very best life I could, for her, until she passed away 4 years ago. My health ultimately deteriorated and I went on disability 2 years ago. I had lived all of my life caring for others. However, soon after my mother passed away, I began remembering horrible sexual abuse I endured from my father while growing up. It was a blessing I only remembered recently, and I did not have to live with the memories for so long. I now am 60 and have never gotten married or had children. I have few friends due to constant focus on work and medical problems. The blessings I have received in life are numerous, though not typical. Any time I can give someone hope or help, that is a blessing to me. Any time someone helps me, the gift of themselves is a huge blessing. I daily have a lot of hardships, as do many of you, but God has always provided what really counts. I have been greatly blessed to live my life. I pray that you all keep the faith. Life is a gift. Whatever life you have, use it well. God bless, Mimi
Recently, my son and grandchildren have moved into the home I share with my husband. I am now thinking of leaving my husband of 15 years because he has steadily become IMPOSSIBLE to live with. At first this might appear to be my son’s fault, but months ago I told my son that my husband had become harder and harder to tollerate. He reminded me of how this man has become a real father to him and grandpa to my grandchildren, so I abandoned the thought. Since they have moved in, they now realize what he has become in the last year. In this last year my dear mother-in-law fell, broke her hip, moved in with us, became deathly ill and passed away. At first I was giving him the benefit of the doubt, but I’m beginning to think he kept me on just as a caregiver to her. Long story short, this man is not the man I married. I’m sure that I have changed too, but mostly due to my illness. My son has heard him tell people that I’m too lazy to cook and clean, (which he has done way before the mom-in-law thing. My son has been helping with all of that even to he has filed for disability because of a broken foot, bad back FM/CFS himself. I loved, even adored this man at first because he said he could live with the FM/CFS. It appears now that “in sickness and health” meant nothing to this man. We all need out because the man has become toxic to us. I can’t afford the house payments or I would ask that he leave. But now he has all of his mother’s money and can afford a good lawyer and I can’t. Can anyone say ‘HELP’?
The secrifice i made in my life out of FM is not to have children. At work they seem to understand but when the time come no one does. i have learn to accept thing that i cannot change. My family does nto know what is happening to me as they think i fake my pains. Unfrotunately my siblings don’t like me because they thing mother favours me than them. my mum is the best thing that ever happend to me she assist me when i cannot wash myself. i have also decided to leave love life alone. Man pretend to undersstand and when the FM seem to appear they run and hurt you. To me it is also bad because i also take methothraxate which causes more problems. Thanks to all who share their experiences.
i too have given up a part time job in a fast paced kitchen i loved my job but with constant pain in my upper back that got worse as the day went on and popping strong pain meds to get through the day eventually the fibro won so now i am not working and at 53 i feel like a waste of space ,to look at me you would not know i am in constant pain i try very hard to hide it ,i know that people who know i gave up work due to illness judge me and yhink i dont want to work if only they could experience my pain for a day they would soon change their opinions ,not to mention all the other symptoms that go with fibro ,im wondering if any fibro friends experience over sensitive teeth as im having a lot of this and im curios if this is another little fibro ;side dish; stay well fibro friends
I have wondered for years why I wake up so tired
Lyn I also have intermittent tooth pain. It feels like
My gums are swelling. I also had to quit my job in
A Waldorf kindergarten and I miss working so much.
I need to apply for disability because my husband
Moved out and I am trying to keep our two teenager
Headed in the right direction. The pain is hard to deal
With but the fibro fog is impossible. I have had this
Illness for a few years,but have only recently been
Diagnosed. I am still subbing at school occasionally
And have started giving people hand out explaining
My health FM so I don’t have to explain why I don’t work
Much to another doubtful person. Thanks for this forum
I have neen diagnosed with Fibromyalgia for 4 1/2 years but I’ve been hurting since I was 17 yrs old. I am newly married without children. I can only imagine what you everyone goes through b/c our lives are all different however we have this illness which we all know so well. I hope your sitiation got/getting better and you are enjoying life more. Making decisions for your health sometimes seem so selfish to others but they won’t understand. Im 28 and expected to have children but honestly I think I would go crazy. I can barely work a normal job and that is already heart breaking. I know my life is not what I expected but I want to make the best of it. Honestly a child would make things more difficult and the guilt of not being able to function as I once did would be worse. When I was a child I believe my mom had Fibromyalgia and didn’t know it. She did what she could but the older I got the less we went out the more she called me to do things *i thought were so simple for her to do”. She was always tired and would sleep for hours. I dealt with it but i did feel deprived b/c i was a child and i didn’t know what fibro felt like. Till this day she still hurts and I understand 100%. With that being said I don’t think it’ll be smart for me to have kids. No reason to create more tension for myself even though it was my dream. Making life long decisons based off our pain and support is difficult but it must be done. I’m glad I found this post. Everyone please stay encouraged and remember it’s not our fault.
I am a single women, struggling with Fibro, I HAVE TO work full time to support myself (rent, groceries, bills, etc). How do you bring in a full time income with Fibromyalgia? An income that will allow me to live in a safe nice neighborhood, have full benefits, save for retirement and have enough income left over to afford the good healthy food, supplements needed and housekeeping services to manage this condition? Oh yeah…and money left over to actually have FUN and attend social events or even take a vacation? Do you know that an insurance rep at a Fibromyalgia support group told me that I needed to find a man that worked in Corporate America so I could have all of the above? Are you kidding me??? That was the last support group meeting that I attended. Need REAL resources and action items that work from a woman who is currently achieving this. Not interested in hearing from women who are supported financially by their husbands, boyfriends or family. Need real solutions from single income women who are already achieving this. Unfortunately I have only heard from women who are stuck in miserable marriages or unhealthy relationships with boyfriends because they know financially they couldn’t do this on their own with Fibromyalgia. Been doing this on my own financially for 5 years now…and it’s wearing on me.
my marriege is going down the drain,he is tires of me being sick,because I can’t do what he wants, so we or I decided to get a devorce it will be better for all of us,I