Sometimes I think it would be so much easier to just be lazy and to not give a crap about life – then having CFS & Fibromyalgia wouldn’t be so hard and confusing. I am living the life of a sick person but it’s not me, it’s not who I am inside and it’s not what I wanted my life to be. I am 41 years old and I should be on top of the world right now in my career and in life and here I sit, in my living room, staring at the television, trying to figure out how I can set goals, achieve them, and make something of myself without making myself bedridden in the process. Just that thought alone is enough stress to send a CFS patient to bed for the rest of the day.
I am a happy wife and mother but I am not happy with my OWN life. I want more for myself, I expect more for myself, and I deserve more for myself and the only people that truly get that are my other CFS type A, domineering, go-getters at heart like me! 🙂 When I look back over my working years, I remember being happiest when I was striving to reach a goal and working towards promotions and breaking through boundaries. Those are the things that I strive for and have always lived for. I don’t know how to do that with CFS and Fibromyalgia.
I definitely can’t do that in the workforce any longer when I am only able to work 5 hours a week. I should be happy that I am able to get out and do that and yes, I am. But I have to admit that when I am working and I see a young manager walk by I will think to myself, “Hmm…I was doing YOUR job when you were still peeing in your diapers and now I can’t even work a regular shift. I’m a nobody here and that’s what I will always be.” No matter what I do, where I work, I’m not happy unless I am striving to move upward, forward, learn more, do better….that’s just how I am wired. And I don’t know how to change that. My husband keeps telling me that I have to change that thinking and believe me, I have tried over and over, but how do I change who I really am? This is ME. This is who I am but I can’t be that person because my body won’t let me.
After I hit my last big career high and low all within one year of each other, I not only completely destroyed my health but I also destroyed all confidence in myself and in my ability to take the risk to try again. I am now at that place where I want to do so many things, want to accomplish so many things, but I’m afraid to attempt them because I’m afraid that as soon as I start to get anywhere, I’ll have a flare and doom will strike again. It is a repeated cycle that I have lived over and over the last 20 years and I guess the last failure was just too much to take.
Some women live to be wives and mothers and that is what defines them. For me I have always known that I would need more for myself than that and I do. I just don’t know how to find it, accomplish it, and sustain it all while being so chronically ill.
I’m exactly the same, honestly. But you have to view your achievements in context of your situation. Buying a top of the line car isn’t an achievement for someone with lots of money, in the same way that getting up in the morning isn’t an achievement for a healthy person.
I have an ex boyfriend, who has depression related health issues. Apart from the depression he had all of the resources in the world – he’d been private schooled, he was very very bright, he earned a good wage, and his parents were very well off (helping him with deposits for houses and so on) and we were in a (for a long time) happy long term relationship.
But he couldn’t stop ‘forgiving’ himself for not being able to do something if the depression made it hard. If it was hard to get up in the morning he’d go to work 2 hours late. If it was hard to clean up the flat he just wouldn’t do it. If it was stressful to deal with the bills then he’d leave them unopened in boxes. If it was effort to wash himself, he wouldn’t. And so on.
Now, his life was always going to made harder by the depression, day to day tasks would always be more difficult for him and maybe some days they would be impossible. But not everything, every day. And that’s what it came down to – the only things he’d do were spend money, piss around on the computer and occasionally socialise.
I’m exactly the same, honestly. But you have to view your achievements in context of your situation.
I have an ex who has depression related health issues. Apart from the depression he had all of the resources in the world – he’d been private schooled, he was very very bright, he earned a good wage, and his parents were very well off (helping him with deposits for houses and so on) and we were in a (for a long time) happy long term relationship.
But he couldn’t stop ‘forgiving’ himself for not being able to do something if the depression made it hard. If it was hard to get up in the morning he’d go to work 2 hours late. If it was hard to clean up the flat he just wouldn’t do it. If it was stressful to deal with the bills then he’d leave them unopened in a box. If it was effort to wash himself, he wouldn’t.
Now, his life was always going to made harder by the depression, day to day tasks would always be more difficult for him and maybe some days they would be impossible. But not everything, every day.
Now he had so many resources at his fingertips, but because of one problem he gave up functioning. You have so little resources right now, and you’re still getting up and doing what you can despite them.
That IS a massive achievement – you haven’t given up even though you feel like the world is ending. Don’t knock that, it’s a strength of will that you can’t teach someone.
Sandy Robinson says
Thanks, Lily. You are right. I haven’t given up. I do keep trying to find a way to live and be happy with myself. 🙂 Your comment means the world to me!
As I read your post I feel like I have a twin sister! The adjustment we have to make due to this illness is very hard. Our priorities, interests, and life changes. I don’t believe people can truly understand the great impact this chronic illness has made unless they experience it. I was told “You are not your job, get over it.” However, much of what we are made of is what has driven us to the career or jobs we have had. The key to dealing with the change in career is focusing on what we have to offer and who we are. Sharing your experience has helped me realize I am not alone and that we have to grieve. We have lost a part of who we were and now God wants us open our minds and hearts and realize we have so much more to offer. We can share our story and help others along the way. Teach people how to balance their life because it isn’t an easy job. It does get easier to accept where you are, but you never loose that desire to get your life back. Perhaps some people are been able to forget, but I have lapses, hopes, and dreams. When that happens, I meditate, ask God for guidance, and work on my attitude. Hang in there! There is and can be a whole other world waiting for you to awaken and enjoy, just at a slower pace.
I hope and pray you have a pain and fatigue free day.
Sandy Robinson says
Thanks so much, Viviana. I appreciate your comment and your kind words. I can be really hard on myself sometimes and I do need to be happy about what I have been able to do. I just wonder if we ever get over the grieving process? It feels like it never ends.
Phyllis Dominski says
I found some people in 2010 I kept sending comments to old comment sections is that FM and CFS fog or not!. Thanks all of you for the comments you learn something all the time from people with our illness. The worse thing I have heard is that I am sick the next is because of it my now person is gone and you have to try for a much slower personality. Oh Sure!!! All I have to do is stop working after 20 years . I mean I worked seven days a week and some 12 hour shift I am making great money I have 2 kids and single, I have dances to go to,I have work outs to do, groceries to buy,kids to take to school, and some college to take and friends to go places with it just isn’t so I’ll show you well obviously that’s not so you watch I can do all this! Obviously not it wiped me out for 3 months I was in bed went to the kitchen went back to bed and gained 40 pounds. Now i wait for the days I feel good by the way I am 61 and still having a hard time dealing with this illness and all the many illness we get. On good days I try to clean my closets and my house. I try to exercise these are some of the things I start and never ever finish, I try to walk outside in the winter and the do the treadmill in the summer because I have a allergy reaction to the sun but I did try I got the worse sunburn I could ever get on my chest,stomach and down to my chest and I just went to Home Depot and back. Now I get heat rashes during the summer every year. Just a little more and I’ll be done. My brain I have been lost driving, once I got lost at a motel and had to go to the desk and I told her I was lost and she said I will have to call the room to find out if she could give me the room number to me lady I am in that room it’s a good thing I was married by then because my husband came looking for me you know he sure looked really good to me! And last of all, can any of you not go to a restaurant or a buffet not me unless I follow someone that I came with my anxiety goes into overdrive I just stand a few seconds to get my barriers together and look for someone I know and I’m not going to cry in from of all these people no way! I hate being in a fog now I want to thank you all for reading this but how about your experiences is there anyone like me out there? God bless you all. Phyllis Dominski As you can tell my brain is running rapid and I’m sorry!Bye
I sent the post to my mom to read, I also feel like we have twin lives, it’s so weird. I’ll be feeling something, or ill with something that they can’t figure out, and you post how you feel and it seems to be the same way I’m feeling.
I kept going to the DRs and telling him that I’ve never had mono, but if I did, this was how I thought it would feel. After reading a post you wrote about your symptoms a few weeks ago, I figured out that not only do I have fibro, and a long list of other things, but it also seems like I have CFS also. I always thought it was just being tired. It seems like each self diagnosis I put on my list, ends up being diagnosed by the Dr after I bring it up to them and tell them the same symptoms I’ve been telling them about for the past 10 years.
The worst part of all of this, is 10 years ago, other than endometriosis, I was fine, hardworking and independent. Then I had a 3rd set of lupron shots (not recommended, by me or the warning labels), and my body seemed to go into a fight against iteself. I rarely have a good day, and when I do and try to get things done, it takes me days if not weeks to get back the strength from overdoing it.
Now the only time I really get out of the house, is to go to Drs appts, and have to rely on family to drive me places. I’m just so tired of living like this.
Sorry for the pity party, but thank you for your posts, it makes me feel not so alone.
Sandy Robinson says
Hi Lynn, It is so hard to be independent, hard-working, strong-willed and not have a body that will do what we want. It is hard, I know. We do end up becoming advocates for our own healthcare and we have to bring many of our symptoms to the attention of the doctors and tell them what we think may be wrong because as women, it’s sad to say, but we are often stereotyped as hysterical, needy, whiny and depressed. I hope you get some relief and get some help. God bless you.
Ford Gambon says
hello i read your post i think you are disappointed with your life but friend life is going so. Thanks for posting this.
Sandy – My heart goes out to you. I’ve seen a lot of people in your kind of shape wanting to be on top of the world in life now. I am 42. It is your time. These people changed every aspect of their life through their consciousness using the techniques learned on The Avatar Course.
These techniques have worked for people who feel down deep there is a way out and yet have not found it.
Check out AvatarResults.com – I will not benefit from you going to this site. I just want you to know there is an answer out there for you. Keep striving my friend.
I am amazed to read this. I am ten years younger and I’m a male, but I am going through the same sort of situation. The pain medicine, muscle relaxants, etc … Just the stuff required to prevent insanity, they drag me down so hard. That of course is on top of the fibro + CFS.
My doctor tested my blood a month ago and reported a serious vitamin D deficiency. I read an article on this very site today about things that can result from this. Instead of eating indoors (I am vampric when it comes to sunlight) I sat outside. When i got back to my desk, i was more awake than I had been all week.
I know you have probably tried this, but I figured I would just share my experience and also my empathy to your situation. All I can say is, hang in there. Don’t give up. When you give up and go back to bed, it only pushes you down further. In my case, it adds a shroud of guilt. Guilt is a weight we have no business carrying, and i am certain that it makes the pain more intense.
Sandy Robinson says
Hi Scott, I have always said that it has to be so much harder for men to suffer from illnesses like CFS & Fibro. Thanks for your comment and sharing your story with me and others. Stay strong and continue to fight the good fight with the rest of us!
I’m in the process of a full official diagnosis after seeing numerous docs and I am only 35. I’m working full time but it’s a struggle. I had hoped to have a family but now that the FM has kicked in I am afraid to. My boss criticized me in a review for leaving the office at 5 pm (even though I also do some work from home too) and not being willing to drive a total of 6 hours to and from a satellite location, in one day. I also have 3 herniated disks and arthritis in my neck. I don’t have the energy to find a better job and I’m not sure I could keep up with one, I’ve managed to figure out how to look extremely busy and my boss even apologized to me for being so critical but I’ve given up on the career. I learned that if I keep papers scattered all over my desk (I prefer to work in an organized way…) then I look busy. I also pick up the phone when I hear her walking down the hall and I try to walk very briskly if I encounter her in the hallway but I’m actually doing maybe 4-6 hours of week per day. My boyfriend and I hope to have a family and I would be able to stay at home, I think that would be the best direction for me. Then I can still feel valued without the facade.
Hi lynn im sorry to read that u r going through the same things as me almost word for word,its a cruel illness that only seems to affect the caring and hardworking among us,i have had fibro and cfs mildly since i was 21,im 26 now and 2 years ago i went to florida,i was bitten 44 times by red ants an had a massive reaction to them,from that day my illness upgraded to chronic an i havnt had a day without severe pain since,im on 21 pills a day an it stil hurts..i hate the fact the life i once knew is over,i c all my friends living their lives around me an its hard,all i wnt 2 do is what i feel in my mind i cn do..yet its physicaly impossible..take care lynn,and thanx,ur post made me realise im nt alone in this x
I feel the same way Sandy. Unfortunately I CANNOT come to grips with my “new” life and while I know that doesn’t help anything something deep inside me will not let me accept this. Being a type A go-getter with fibro and CFS feels like torture some days and quite honestly I don’t know that I will ever be able to throw in the proverbial towel of the person that I used to be.
Asma Hashmi says
well my illness started 14 yrs ago when my first child was born ,it was flue like intense pain in my whole body that lasted 3 days,and then i was fine but gradually these episodes increased and after my second child got worse.My physician diagnosed me with fibro myositis,her prescriptions did not help me i was alo diagnosed with under active thyroid disease,then followed weight gain, and high blood pressure, i also started getting allergies and having difficulty in breathing in lots of places including grocery store and some parts of my house, work etc.in the meanwhile my pain threshhold got worse and worse fatgue became worse ,and after lunch i would be totally exhausted, thats where the strong pain killers and later muscle relaxants were introduced as i could not function anymore on over the counter stuff,to add to that i devloped diabetes,now for the last one year i cannot work,i m mostly in a extra airconditioned bedroom ,i take classes on line ,try to have fun talk with my kids because thats all i can offer them besides helping them in studies.i enjoy stuff on internet ,works of poet and scholars.I try to keep my spritual side strong,which gets me through the day.I take a whole bunch of medicines an supplements,i have temperamental flare which i regret later.I m a physician basically who opted for clinical research because of this illness and. when i was on top of it and time to cash my hard work i could not go to work anymore.Iapplied for social security which was denied so i hired a lawyer and working on it,i am also thinking of learning some vocation to work from home on my computer anything to keep me mentally busy.
But what helps mee is the courage of people in worst condition than mine and still smiling,being grateful and going on in life.
Love to u all and hopefully we will get a cure or this too.Wishing u all pain free and stress free days.
Leisa Swan says
Lynn I am 49 and have battled lupus, fibro and RA for 10, even tho my rhuemy says I have had it alot longer just didn’t know and was not diagnosed. I was a deputy sheriff for 12 yrs, always tired, and would have episodes of so much pain wanted to have someone tear off my arms and legs. I was promoted to Sgt over communications which was my passion, and then was up for 911 director of our county, then my whole world fell apart. I have always been a go getter in any job I have, the stress was the big trigger for me then and I was out alot. Then I moved after a divorce back to my family and every job I had I always ended up being a supervisor, then was forced to take a set down job at a cell phone call center, I have had 3 back surgeries and double knee replacement the constant setting hurt me so much and the stress from some of the customers, and from corporate just put me over the top. I am now on short term disability, I know I am going to lose my job but trying to hang on as long as I can, have filed for social secuity disability and at times that makes me feel like a failure. I just set small goals now and its very hard, I cry when I can’t go to a family function because I am too tired and hurt to bad to get out of bed. There have been weeks when I never leave the house. The friends I have are still going on living their lives but I’m not included, they don’t even come see me which really hurts. I have made some new friends that call check on me and come see me or I go to their house and get in the hottub. I haven’t seen my grandson in over a year because I can’t make the 500 mile drive, and my daughters life is too busy so she says to bring him to see me.
But I won’t let this disease stop me, 2 weeks ago I walked in Whitneys Walk for Life, it is to raise awareness on depression and suicide, I lost my baby brother last year to suicide. I went to the walk and they brought a wheelchair for me if I couldn’t make it, but I did it, I walked all 3.2 miles and yes I was exhausted and hurt and it took me 3 days to re-cooperate from it, but I am proud I did it. I plan on walking in downtown Chicago October 2, 2010 in the Walk for Lupus and can’t wait. Because I am an over achiever I push myself all the time, and pay for it, but someday I hope that I will accomplish something and will be able to go on without being down 3 or 4 days. Believe me I know the downs, when I can’t make it to the bathroom in time and the bathroom is only 10 ft from my bed, its very embarassing. I forget things all the time, which scared me because my Grandma has alzeimers and my Uncle was also diagnosed and they say I am at high risk, so when the fog sets in, it worries me, I have notes stuck all over the house and calendars with dr appts wrote down, and things I need to call about. Its definitely a life change, I hope you all the best, and know that we are all there with you
Leisa Swan says
I meant Sandy on last post, whoops see can’t even remember a name from one moment to the next.
Hi Lynn, I was diagnose with FM last Sept the Rheumatologist said I had RA and a year and a half later they decided nope it’s not RA but it’s Fibromyalgia. I had a job that I loved working at a hotel in housekeeping but that got to be to physical so my boss at the time put me at the front desk which I liked a lot better and the overnight shift became available and that lasted 3 years. The overnights got to be to hard on my body and another specialist told me that if I keep up this pace I was looking at early death.
Now my husband and I manage a 30 unit apt complex and I am an Arbonne consultant as I lost my health insurance last May and Arbonne’s nutrition line is helping me tremendously with my pain. I am able to keep up with my daily activites now and volunteer at our Church. I don’t push myself cause I still have flare ups but not as often. I’m starting a Fibro ~ Info Seminars in our community. Hugs!!
i have felt exactly how this author felt the last two years of my life. but what has really changed my attitude was noticing recently the toll it is taking on my children…if you think this is hard on you, think of how hard it must be on your kids to see you like this. i want to set a better example of how i am coping with this illness, especially because they may also have this disease one day…i have 4 girls, and already 2 of them are showing signs of FM. somehow that helps me summon up the courage to deal with this in a more positive fashion. and make extra sure that they adopt healthy lifestyles as adults.
I completely understand….Right now I am trying to define who I am….I know I am a mother and have a partner, but I don’t know what lies ahead. I am hypothyroid and have fibro which has made me take a leave from work…I struggle every day to get basic tasks done. I have started a support group in my area which is wonderful, but I don’t know if I will ever be able to handle teaching again – or at least the kind of teacher i want to be.
I will never be the same person I once was…I need to know where to go, but need direction…Ahhhhhh….So this is life, eh ????
Hi all, just discovered this site today so Hi and gentle hugs to you all. I have Crohnes Disease, short gut syndrome, enteropathic arthritis,and now been told I have Fibro, this is because despite B12 injections for my tirdness and my body being in pain but at times not showing visable signs of inflamation. It does make sense but I am anxious they do not ignore the medical history and just blaim everything on the fibro.
I am a divorced single Mum, I used to work, long hours, hard and fast..a sales rep, out on the road meeting people, hitting my targets and enjoying the financial rewards……..now I too wake up and think to myself, why am I here, I’m a waste of oxygen ans space. My sons are 19 and 21, my youngest lives with me…if it wasn’nt for them I might as well not be here. All I do, on a good day.. is watch tv, potter about the house and maybe go for a little walk or spa. ( a walk in the pool and sit in the jacuzzi) I had to have a friend cull earlier this year, someone in my group of so called friends reported me to the benefits agency assusing me of fraud…on interview (the most scarey day of my life) my medical records backed me up, to cut the long story short it ended with the interviewer advicing me to change my ‘jealous’ friends (they are welcome to my life anyday!) I would trade my motability car for for a company car in the blink of an eye) so now my little group of friends have gone out of my life! I have a few wonderful, loyal and caring friends but they live 2 hours away. My three year goal is to relocate to their town when my son moves out.
I do have a boyfriend, becuase of the location he lives and his job we only see each other at the weekends, some weekends I go to his house but the drive has exhausted me and I end up sleeping and/or in pain for the whole weekend and we end up doing nothing!
This weekend I hit an all time low with depression I guess and shared my inner thought and fears with him,I was really sobbing, I did I admit have what even I call ‘the poor me’s) he was understanding and sympathetic but then made a comment/suggestion that hurt me to my core, he said…..I feel that maybe if you were absolutely cut off from alll benefits and MADE to go back to work, you would have no choice but to ‘knuckle down’ and get on with it because yo have no other choice!!!
(I can see in my mind your jaws dropping and you anger welling up!) I havent really spoken much to him since. I really dont know how to deal with a comment like that, especially from someone who is usually ok (ish) about my medical problems. He has apologised saying he was stressed and having a bad day!!
I dont want to try the anti depressant route, it didnt work the last time) my life needs to change, and only I can do that, a pill isnt going to change my not worth having exsistance.
Sorry if I have gone on…nobody else understands.