Fibromyalgia & Chronic Fatigue Syndrome: What Do You Miss the Most?
It's the rare person with fibromyalgia or chronic fatigue syndrome who hasn't had to give up some activity. Whether it's something little (like an occasional hobby), or something major (like a career), we've all made those sacrifices.
I've had to give up some things because I simply can't do them anymore, and other things because of the toll they take on my health and functionality (and some for a combination of both reasons.) I've given up my TV news career, my gym workouts (a weight circuit plus 45 minutes on the treadmill? Are you joking?), occasional hiking trips, major home improvement projects, etc. Fortunately, I've been able to gain back long walks (on good days), gardening, a social life, and enough of my brain to write a few blogs and articles every week.
Some things, though, I still don't have back. While I hope they'll someday be part of my life again, there's no guarantee. I have to say, I really miss long days of shopping. I used to spend hours wandering through shops, being inspired by things I saw and just enjoying the whole experience. I also have to admit I really miss being able to eat whatever I wanted. I was recently diagnosed as gluten-intolerant (not Celiac, though), and I'm especially missing "convenience" foods -- have you ever noticed how much of what Americans eat comes breaded, on some form of bread, or wrapped in a tortilla? Earlier today I broke down and ate a single chocolate chip cookie, and now I have pain in my esophagus and intestines.
On the emotional side, I miss the feeling of freedom. I used to feel free to pursue whatever hobby, vocation, interest, etc. I wanted to pursue. Now, I have limits. I miss the benefits of the higher income I could have if I were healthy. Some opportunities are no longer available to me. I resent the limitations within which I have to live.
I try to keep in mind that a lot of people have had to give up much more than I have because of these illnesses, but at some moments I just have to get angry or frustrated about it. We all have to vent now and then to keep from exploding, right?
What activity do you miss most? Is it something you think you'll be able to "reclaim" eventually? What feelings, attitudes or assumptions about life do you miss most? Vent your feelings about it here, by leaving a comment below!
Suggested Reading:
- Self-Efficacy & Optimism for Better Coping + Readers Respond
- Exercising With Fibromyalgia & Chronic Fatigue Syndrome + Readers Respond
- Learn to Pace Yourself
Photo © Rupert King/Getty Images
Comments
Yes, I’ve read many of your articles etc. and you really are very fortunate. When I read your stories, I can’t help but say to myself “Wow, I sure wish my husband (with CFS and Fibro) could do what she can.” He is almost completely and totally bedridden, and not by choice either. He was diagnosed with CFS and Fibro in 1989, and has been totally disabled and 98 – 100% bedridden ever since! We’ve had several anniversaries where we tried to go out to dinner, and as soon as the food came, we had to pack everything up and leave because he felt so sick and so weak that he couldn’t even sit up anymore! He’s doing extremely well if he can just make it to his doctor’s appointments, after which he suffers the after effects for weeks or months.
I remember you talking one time about limiting your shopping etc. around the holidays, and I thought “Wow, at least you can go!” Can you imagine being so bad that you can’t even sit up in a chair without feeling extremely sick? Hardly ever?
My husband used to be a tremendous song writer, piano player, and wonderful singer, but now not only does he not have the strength to play piano at all, but he has almost completely lost his voice, and cannot find the strength to sing at all! One time the owner of a record company offered us a free record contract because he was so impressed with a recording of my husband’s and my singing (from years ago). But sadly, we couldn’t accept it because by then he was too weak and too sick to even sing anything. He’s doing good if he can just talk!
He’s also doing well just to get up off the couch & use the bathroom without help. He has to grab onto the wall many times as he is walking the short distance to get there. He is on the couch 24/7 now except for doctor’s appointments, and very rare instances of going to get something to eat (on a good day, and with me driving). But we’re lucky if that happens even once a month. He used to fall down onto the floor regularly whenever he got up to use the bathroom.
He also used to be a computer expert in both hardware and fixing computers, as well as in software and programming them. He also tested and fixed computers, and even built them, and we would be really well off if he was only well enough to even work part time. He was a computer consultant until the end of 1989/beginning of 1990.
We have been married now for 29 years next month, and you just wouldn’t believe what he’s been through with this illness and the physical and emotional pain, extremely severe weakness and inability to function, and of course the depression and despair that (a man especially) goes through when he can no longer even provide for his family, not to mention can’t even go see a specialist of the illness because of a lack of finances and the lack of physical and emotional strength.
He deserves help sooooooooo badly, and I think that one of the CFS/Fibro specialists out there could help him to at least improve if we could just get him there to the office where the Fibro and Fatigue specialists are testing and helping patients with this illness. I’ve never even heard or read about anyone who has the illness as bad as he does, nor for as long as he has had it. He’s been suffering with this even before I ever met him in 1979, and he continues to suffer with it now, 30 years later, and at the age of almost 52.
I can certainly understand your frustration with things. But just remember to think about all the wonderful things you CAN do rather than what you can’t.
Please let me know if you know of any organizations or people who could or would help out my dear husband who has been so sick for so long (30 years)!!
Thanks,
Sandy
A,
You go ahead and vent…it’s a good thing,
I am a pro photographer who has lost nearly all of her biz. Tampas oldist studio since 1934.I feel guilty.
I cant do much and am trying to stay alive.
The man in the article above can get help for free but he must take the trip
I saw Dr, Russell Roby in Austin Texas.
He knocked out reocurring sinus infections ,every 6 weeks, I would do a round of antibiotics and of corse the pain factor would always esculate with the infection.
Gone also is sleep apnea!!!!!!
Just got a letter from Roby, he will treat anyone who has no money or insurance for free.
Google him, I think I found him thru you? not sure?
Roby does intense allergy testing and hormones, he looks at area that are boarderline. , He then treats useing antegens.
Look him up. He has some great insite.and cares.
Judy
I grieve my old self, just as you describe. I need to take strong painkillers and various other medications just to keep going. I have to work to support myself, but work is about all I can do these days. I collapse when I come home and though I love my friends and would love to spend more time with them, I simply cannot. I need so MUCH downtime to have the small amount of uptime I need to provide for myself. I rarely tell people of my situation – mostly because they don’t understand. The stigma of fibro keeps me silent – the sense that it’s a neurotic condition, a middled-aged female malady that could/would be cured by “toughening up” or “putting my mind to it”. My children are all old enough to understand, but they don’t really – they question the medications I take and are impatient with my need to rest, take care.
I’ve struggled with self-acceptance – always balancing the need to rest with the equal need to keep going, not allow myself to truly become an invalid.
I don’t like living this way. I know there’s nothing I can do about it and I don’t want to sound like a complainer as there are so many others in situations more grave, but the narrowness of my life saddens me sometimes. And I have a hard time accepting the reality that I will (most likely) never have the energy or vibrancy or creativity that I used to have.
I appreciate your blog/column, especially since I have no one in my life who shares my condition. I tried a local fibro group a few years ago, but the emphasis was on the DISABILITY of fibro, not working toward ABILITY and I found it depressing.
I grieve for my messy home, my lack of energy, my need to spend so much time alone recouperating and I grieve the fact I just CAN’T do what I want to do. It is hard and I know it contributes to worsening depression from time to time.
I hope this condition will be better understood – sooner, rather than later – and ways to control/cure this life-limiting dis-ease (for it is the total opposite of “ease”)are identified and made available to ALL of us who suffer.
Thanks for listening.
Dr Roby info
I just Googled to find a neg. report.
Do read it. apparently the doctor has struggeled with alcohol in the late 70’s early 80’s
There are some entrys that are less than flattering
He did bring in another physician who writes all of the scripts.
Roby is currently treating me with Armour Thyroid which has got me out of bed and moving with a purpose. I was normal by 1 point on my t3 panel. He said Too close, lets bump you up a little. IT WORKED.
He also does do skin patch testing…did it to me.
Roby is also an attorney, a bright man. You can find problems with any one if you dig deep enough, His willingness to treat for free tells me alot more than a drug or alsohol incident.
He also looks at adrenalin.
Told me never to take a hot bath before bed as the heat stimulates the adrenals giving you a surge of energy.
He recommends walking before bedtime as much as you can to wear down then a cool shower,I know it does not sound right, but it works.
Robys office in Austin is the nicest,state of the art doctors office I have ever visited. It is heavuly staffed by very well trained professionals.
You can call his nursing staff anytime and if you dont hear back by 5pm the next day you call him at home.
He also sends you home with a pedometer for your walking and recommends a heart monitor band/wrist watch to alert yourself to potential adrenalin surges. You learn to keep yourself calm..
Our name is feminine form of Alexander and means defender of men in Greek. Sandy #1, you go gal as you are living up to your name and need to get it all out so you can take a fresh breath to continue on your rough role. I had to nurse a husband with cancer for 18 months which is so insignificant compared to your task. I am so enjoying being retired and amazed when I look back as to how I ever handled everything. Financial planners cannot understand how I am so satisfied being isolated from people and just merely say I have my cat. I am so worn out after they leave that I have to take a long nap. Normal people do not have ability to comprehend so why waste breath trying to explain and possibly make oneself target for ridicule. We are so much better than normal folks as we have empathy which they seem to lack. Some days I miss my mind.
You have to understand that I’ve been sick since I was at least 10 (that’s the age where I can point to and say I definitely knew something was wrong, but probably had symptoms before then). So, for me, I don’t even know what to miss.
I do admit to envying what I see in other people, though. I see folks who go out and exercise and actually feel better after! Even the thought of that completely blows my mind, because I’ve never been able to do that. Whatever subject I had in school after PE was a total loss for me, because I’d be too exhausted to pay attention. I think, more than anything else, if I could alleviate one thing it would be the fatigue. I can manage the pain (most of the time, anyway), but the fatigue is what inevitably brings me down.
I have so many interests in life, so many things I want to pursue, but I know from experience that I can work or I can have other interests. There isn’t enough energy to do both. And even working is an effort a fair amount of the time. It’s a struggle just to get through the days.
I miss my life.
I miss being proud of my leg strength in spite of knee problems and being able to walk long distances, go dancing, practice mixed martial arts. Now sometimes I wait hours to go to the bathroom because walking from one room to the other is so painful–even though I have bladder problems & make them worse by waiting, or don’t make it on time.
I miss working and home improvement and being able to care for my kids the way they deserve. I miss doing fun things with them instead of trying to find a sitter for one dr appt after another, or making them sit in the waiting room of specialists–asking them to carry more responsibility than other children have to. I’ve always had chronic pain and fatigue but I could still function pretty well, and hide how tired or sore I was. Now I shake after being on my feet for 15 minutes. I take 2 medicines that have a side effect of increasing my appetite, but I’ve still lost too much weight because either the pain takes away my appetite, or it hurts too much to prepare the food.
I really really miss being able to do things for my friends and extended family, and feeling like I was a functioning part of a supportive family network. Now that I’m the one in need of help, I’ve found out that there is no supportive family network. I miss my delusions about members of my family almost as much as I miss feeling like a real person. I hate watching my husband forced to carry so many responsibilities without the credit he deserves, or finding him or the children weeping over what is happening to me and growing bitter at extended family members for their lack of support or worse, their cruel comments/inferences about FMS/CFS and how I’m not as sick as I seem to be, even though I have other “testable” disorders too. I hate my children overhearing them talking about how REALLY I need psychological help– when I’m already in therapy to deal with my stress, grief, and feelings of betrayal and abandonment. I miss the easy laughter of my children, my husband, and myself.
I believe it will get better, as the support system I have helps me make my house more disability-oriented, as I learn not to push my limits, as our finances begin to make some sense again, as I reduce stress, find better doctors, and increase my emotional support network. Just now I’m grieving for all I’ve lost, and I’m trying to find who I am again.
What do I miss the most? After 25 years of this, I guess I mostly miss feeling alive. Yes, it’s been like being half alive all these years, just in survival mode. Being on various antidepressants all these years hasn’t helped. Sure, they keep you from going off the deep end emotionally but they can also leave you feeling emotionally numb. I just quit Cymbalta after being on that for a year, and now I’m taking a break from antidepressants. The trouble is, I do have more “feelings” but after so many years of missing so much of life, I don’t know what I feel anymore.
As far as activities go, I was never a very active person. I’m an introvert and a homebody by nature, so I guess I haven’t suffered in that regard as much as others have. I do miss shopping but now I’ve replaced that with online shopping. I miss cooking. I can’t stand up for more than a minute or two without feeling very uncomfortable. I do light housework since moving around is easier than standing still.
I’ve lost a lot but I’ve also gained some things from my suffering. I’m a very spiritual (not religious) person, and that helps me a lot. I do feel sometimes like no one else understands what I’m going through, but my cat knows, and I love her so much!
Good night and peaceful dreams to all my fibro friends!
Sandy, I suggest you join the “Severe MEites” group listed here: http://www.hfme.org/supportgroups.htm
It’s run by Jodi Bassett who is bedbound with severe ME (aka CFS) and I’m sure carers are welcome also. If you’re not sure you can contact her or leave a note via her website and she will put you in touch with an appropriate group I’m sure – she’s a good person.
I’m bedridden with ME/CFS and Fibro myself – I use the computer set up over my bed – so I feel for you and your hubby. You are welcome to email me personally at ricky@notdoneliving.net but I may be slow to reply as I’m sick … them’s the breaks!
Best wishes,
Ricky
Hello Adrienne, I enjoyed reading through your blog, but honestly the very first response you got from Sandy about her husband totally upset me. I realize this is an open forum and each of us has our own opinions, but it is NOT fair to compare fibro patients to each other. Each of us has our own battles to fight and if we are not there for each other, then maybe find another forum to tell the world about how worse off your husband is than anyone else. Dont get me wrong, my sympathies go out to you for caring for him all these years and he does seem to have a pretty severe case of fibro/CF – but what gives you the right to say ‘But just remember to think about all the wonderful things you CAN do rather than what you can’t’. YOU are the one who is focusing on what YOU and YOUR Husband CANNOT do, why preach to us about complaining about what WE cant do anymore? I have had to give up a ton of wonderful things and it makes me so sad. I’m sure your husbands illness progressed to the point he is now and he didnt all of a sudden become couch or bedridden overnight. Slowly, one after one, we all have lost something we loved to participate in or do, where it then becomes very rare that we do anything at all besides trying to get through the day without tortoruous pain or horrendous fatigue. Alot of you mention your great support system. Well, be thankful for that – mine bailed out on me. I now just have my husband. Am I pissed at these people? Hell ya! Especially the one person who said ‘I was just playing the victim all the time’. Yeah, ok, whatever!!! I guess reading Sandy’s post reminds of the person who made that comment to me (she also has fibro) and who also said that she has it MUCH WORSE THAN ME! Mind you, I have had 5 surgeries in less than 5 years, the last one being total knee replacement. Sorry, but try having fibro AND having your old knee cutout and a new titantium one put in. Its been a year and I still have not regained my energy and am constantly fatigued and in pain – every day I wake up feeling like I have the severe flu aches head to toe. It totally sucks. I’m 41 yrs old and feel like my life is over with, I dont want to go on like this anymore. Just today I started a partial hospitalization program because of my major depression and making statements about ending my life. If I could just feel alive again, if I could just go back and do some things over again, if…if…if. Well, God Bless My Husband for sticking through all this madness with me. When others walked out – including my own mother – he never waivered. Yes, he is stressed and wants to ‘fix’ me so that I can do things with him again (one of those being SEX) and also, get back on track with my successful IT career I had going on before I got sick. I was the breadwinner in our family and now we are barely getting by and may just lose our house that we have lived in 12 years and refurbished. I’m just now applying for disability because I see no other choice in the matter. I believe my fibro started sometime in late 2006 and finally got officially diagnosed last October after I had a hard time returning to work following the knee replacement and was laid off. I havent worked since. My brain doesnt work like it used to and I doubt I will ever be able to program again – I just cannot connect the dots anymore. I use to be quick on my feet and could solve any computer or network related problem FAST so that users wouldnt bitch and moan too long about downtime. Now I am so fuzzy in the head, I couldnt fix my own computer when the hardrive crashed a few weeks ago. That made me very very sad and worthless and pathetic. I look at my resume of IT positions dating back to 1991 and wonder how I did any of those complex jobs. Now…I picture myself working the cash register at a big-box store or something. Or for awhile I thought about Starbucks because I love coffee, but I would have to memorize a ton of different drinks AND would be on my feet the whole shift – nope couldnt do it. And yes, I’m sad about my income potential being now reduced because I cant stand behind my resume and talk about the things I used to do and how a quicklearner I was because I cannot, for the life of me, remember the things I used to do or how I did the work. Like a different person posted, I dont even know who I am anymore. What have I become? What is in my future? More than anything in this world, I hate fibromyalgia. It has stolen the joy from my life I once had and I am in the process of figuring out what my “new” joys are.
Lord help all of us to understand ourselves and our limits better, for our support systems to remain strong and faithful, and for all of us to reach out to each other as only we know what it is like to live with fibro or cfs – no matter if you have the worse case of it on earth or the easiest case!! Doesnt matter, pain is pain. I feel for all of you!
Peace!
I miss the days when I never had to keep hearing this: “But just remember to think about all the wonderful things you CAN do rather than what you can’t.”
I had to quit an amazing teaching job, a career in academia, dancing, hiking, socializing, and being my own self. And you know what? There are days I just don’t want to think about how “wonderful” it is that at least I can sit up in bed and type on a laptop, and go run errands from time to time.
Hi ZenMonkey and everyone!
I hear ya….I’ve heard it too. Its amazing the comments I get from people when I explain to them about my fibro, depression, arthritis and assortment of other ailments (dont get me wrong, I’m not going around to everyone telling them my woes). Besides what I posted above about ‘being a victim’, I’ve also heard “just think positive, what you think about is what you get”. Okay….how does one think positive about fibro so that it goes away? Did I ‘think’ this upon myself? What a simplistic statement to make to someone who is sick and desperate for relief. It is soooo hard to think positive when my brain is in constant fog, I’m in pain head to toe, and I’m depressed yet another day because it just seems every day is just like the day before…and the day before that…and the day before that, etc. Oh and I seldom get out of the house except for doctor appointments. If we have plans for dinner with family or a wedding or graduation party or church or whatever, I have ended up not going at the last minute because of the pain or fatigue. My poor husband is so tired of being asked “where’s Nancy?” and him saying “oh, she isnt feeling well”. He is embarrassed to go to so many events by himself and I’m mad as hell that I dont feel I can go because I’m in so much pain or extremely fatigued and have missed out on seeing family or old friends that I have not seen in years. I miss being social. But I dont want people to see my pain and depression because I think it is apparent when looking into my eyes – my eyes just seem so sad anymore. I never thought in my life that one of my short-term goals would be to TRY to attend an event without cancelling. That just blows me away and makes me feel pathetic.
I’m sure this is in another forum topic, but what kind of comments have any of you gotten from people about how to deal with fibro?
Peace!
I haven’t been able to work for 5 years. I would define myself as a go-getter, type A person before I became ill. On top of this since my symptoms are not measurable my standard medical tests (fatigue, pain) I have been in a long struggle with social security to get my benefits when I was in the work force for 20+ years. But what I miss most is being able to do things with my daughter. I still do what I can with her, but she often hears “no” because I have to rest or I am in too much pain. ON the positive side, I have learned to let myself experience each days joys more deeply. And I am very happy when I am able to spend time with my daughter and when I get more achieved than my “new normal”. I no longer have to be super woman to feel proud of myself.
I miss alot of things ! Just being a NORMAL person who can decide to do ANYTHING at the drop of a hat !! Not being able to make plans to do things…..because you NEVER know how you’ll be feeling !
Having people NOT UNDERSTAND why you can’t go out and do things like you used to do before developing FMS/CFS !!
I could go on & on………but you all know what I mean !!
I have to agree that mostly I miss my old active life, when I was thin and could hike and hunt, and ride horseback, and canoe and ski. For a long time I was very depressed about this, but then I took a yoga class and learned to focus on what I could do no always mourn what I could not. And I found that it actually made me able to do more thangs than I thought I could. I don’t say it works for everyone, and yes, we should have grief and sadness about what we no longre can do, because I am sure none of us would ever wish we had these illnesses. They change us in so many ways–I think one of theys to living with the illnesses is to concentrate and improve on what you can do, not always worry and be sad about what you cannot.
Thank you for your blog. It is very validating to hear everyone’s comments. I have had CFS for 6 years. I miss my life, my job, feeling well. I can barely remember my old life before CFS. I am always dizzy or achy or feeling like some science project in my body. I miss my social life, being able to do anything. Now life is very difficult and I’m much more fearful of things, I feel as if I’ve been tramatized my this illness. I see a wonderful CFS doctor in NYC(I live in NJ) who is very caring but Unfortunetely I am still very ill. Good luck to all out there. I feel for all of you and hope someday that there will be some cure, some peace and that we can have our lives, our health back. Barbara
Hi Guys!
I’m new to the comments, although have been reading the enewsletter for a few years. Thx in advance for being my cybersupport group. Yeah, I miss many things in my past life, or at least since when I could function much better just a few years ago. Mostly I miss having CHOICES. My choices are just so limited now. I was first diagnosed with MCS/CFS back in 1986, then officially with FMS in 1999. I have been managing OK and still working until the past five years or so. As I age, other symptoms related are showing up (like Interstitial Cystitis, sleep apnea, and the debilitating fatigue. So, even though I say to myself I should be used to this chronic illness stuff, I’ve gone downhill so far and so fast (stress due to aging parents, a moldy environment, money, and unsupportive family didn’t help me keep up the self care), I don’t recognize myself anymore. I miss being the independent healthcare professional I was, the career I found later in life, and I also miss having FUN. Not much is FUN anymore.
After five years, I recently got a “presumptive” determination to approve SSDI, so am receiving SSI, but it doesn’t go very far. (NOT complaining, tho). After years of trying to work as much as I could, and destroying my reputation as a reliable employee (people in healthcare were not very accommodating), and injuring my immune system further – at last I have some help from the government.
I also miss feeling alive.
Hang in there, folks – I know what you mean.
Hi everbody, What I miss most of all is ME.
My energy, my zip for life, my being able to do what I want when I want to do it. Giving up my retirement for a tired, cranky, isolated life style. Last month I made plans for 3 days in a row, and couldn’t go to any thing because I wasn’t feeling well. Drats. I do all the positive talk and everything I can, but I haven’t vented in a long time. Thanx for the avenue to do so.
Hi all,
Everyone has stated my ‘lost’ things much better than I could ever put it. I thought I missed a normal life the most. Reality sucks, but’s it’s the only game in town. I have lived with fibro (or whatever is really wrong with me)for so many years that I have accepted who I am as normal, now. My biggest dream is that someone will discover what is wrong AND find a real way to treat this beast. On most days, I do what I need to do. If something doesn’t get done, it will have to be handled tomorrow. On other days, I grieve for the person I think I could have been. The reality is that I have this disease and I try to live each day the best way that I can. Hurting hurts. Just keep trying to help the healers find a cure.
I had a social security hearing last week. What a joke. The Administrative Law Judge had one of their doctors testify because I had so many medical records. They told me, they thought I set a record with the huge amount of records I gave them. The non practicing ss doctor, admitted I met the criteria for CFS. But he thought I should be denied benefits, even though I cant walk at best more than 20 minutes at a time. I cant think straight anymore, or concentrate very well at all. I can’t multitask anymore. I had major surgery on my neck and cant lift my head beyond eye level and I struggling to hold it up to look at people. The doctor lied and said that it was not in the medical records about not being able to look up. He lied/denied other medical problems that were in my medical records also. I gave up a job that I had to have a college degree to have. I run fevers every time you turn around and feel awful. I was supposed to go this weekend with some friends to hang out at a fun place. I was to sick to go as usual. I can’t plan to do anything it seems because I end up sick. I have been sick for over 3 years. I am so tired of this illness, and the stupidity of doctors and others who just don’t get it.
There are some strong comments here but all so true, I would have had fibro/CFs since 1982 after a bout of toxoplsmosis, it has gotten worse over the years. As others have said the thing they miss is me, i feel like my life finished many years ago, I carried on for years but the pain and fatigue got the better of me. I had to give up my work as a swimming instructor which I loved and enjoying times on holidays with my family, I would end up just sitting somewhere while they went off to do things they really dont understand & think I am just lazy. I feel the warmth or stable temperatures my body can tolerate but I live in an area of Australia where temperatures can change 10 – 20 degrees in a day. Must move house I think to have some sort of pain reduced life.
hello my heart goes out to you both…a 14 year patient of fibro…listen did you ever hear of dr.rpaul st. amand md…get this book what your doctor may not tell you about fibromyalgia…it has worked for so many and you can find a doctor in your area that can direct you on this protocal…the secret is guaifenesin…i bet this will work…the most important thing for it to work is to advoid all salicylates…its in anything with a plant …you can eat the plant salicylates but not apply to skin here’s an example aloe gel…tea tree lotin …suntan lotions…listen id be glad to help in anyway but buy this book..or order it on amazon …borders or barns noble thay all have it…buy a used one cheap too…i read this whole book it helps i found a doctor to support it works…also support web …check out guaifenesin.com
i miss me, too. it is hard hearing family and friends talk about how i used to be. i wish the could see that i am still me…not a new me just a different me. i guess the hardest thing is not being up at the crack of dawn and doing everything i wanted to do…work, hiking with my sons, skiing, etc. feeling bad when i need to take a nap. and trying to get people to understand that what i have is real not something i have made up for. thanks for listening. since i found this newsletter it has helped me soooooo much. i feel not so alone. before i knew of noone else that had this.
I don’t know where to start! I miss so much- first of all, I miss clear thinking. I miss my huge vegetable gardening and all the canning and food preservation I used to do. I miss walks in the woods and my bicycle. I miss being able to keep up with other people. I miss being able to be somewhat active two days in a row. I miss life without pain.
I miss my marriage and home. After 30 yrs of marriage I divorced my husband. When I was first diag. and off work for 18 months he could not and or would not understand that his active, busy wife could no longer go out at night or even be up past 7PM. I felt that if he could not be supportive in sickness that I would rather be alone so I could sleep when I want, not go out and socialize and worry about feeling so tired. Anyway. I miss all that but I now have a new reality, in sickness and in health I LOVE my private sanctuary of self care. My dog keeps my feet warm and I eat, sleep and socialize on my energy level and not anyone elses. Many cannot have the luxury of this choice…..but I pay for it all winter long (I’m a teacher) when I drag myself out of bed at 5 AM to go to work and then drag home and often in bed by 6PM. I look at this as a second life, painful, exhausted, private, alone and a new world view. Thanks for everyone’s comments it is so supportive to know that there really are others who can relate to the life we have been given. I have often said, “Cancer patients either get better or die….not us this is what it is.”
What do I miss most from my life?
My youth.
I”m am currently 22 and was diagnosed with fibromyalgia when I was 17. I have a struggle daily with friends that are youthful and in the prime of their life and have no understanding of this disease. I’m a college student and it takes literally every ounce of my energy to make it through the school day, and yet I watch my friends sail through their day and have enough energy to go out and be out all night. I admit it makes me a little jealous. I wish I could have that life, but I know I can’t. It breaks my spirit to know that this is a part of my life that will always be there and something I will struggle with forever. But it gives me strength to read about other people’s struggles and know that I’m not alone. It’s just hard being so young. I feel like no one my age can really relate to someone that has the body of an old lady.
I miss being myself. I miss getting through the day without pain. I hate taking pain medication- they make me foggy. I hate the fibro-fog that wasn’t improved with the medication they put me on – in fact, it made me worse. I’m a writer/editor. I miss my words! Words are a part of who and what I am – I’ve always enjoyed conversing with others. Now I can barely remember the end of my sentence. I miss using my hands and arms freely – like typing for hours on end when I work or crocheting or cooking when I get home. I resent not swimming with the gusto that used to keep me slim. And, more than anything, I miss being healthy. I hate the disappointment on my family’s face when I have to back out of yet another event we have planned. And I hate the lack of understanding on the faces of the people I work with who can’t comprehend that I really have a problem and I’m not a lazy whiner looking to get a day off. I miss being me!
There isn’t a great deal that I can really add to all the comments that I have read, except to say that I am amazed at the broad range of symptoms people have commented on. I also have many of these ‘weird & wonderful’ symptoms (and more) and the comments of other sufferers of this debilitating disease do at least give me some comfort in the fact that I am not alone and not going ‘loony’ !!! I am 59 and my disease was only diagnosed 12 months ago, but when it was a lot of strange and seemingly un-related symptoms all fell into place. I also live in a sub-tropical region of Australia where there is a vast variance in temperature and humidity during summer – may-be I’ll move to Arizona!. SO, what do I miss the most ? My FREEDOM ! The freedom to be able to make plans in advance, whether they be to go out for lunch or dinner, a walk along the beach, a family function or travel. It all depends on how I wake up on the day and I guess I have just learnt not to be too hard on myself and just ‘go with the flow’. And of course I also miss the ‘clarity and sharpness’ that my mind used to have, but again, I just go with the flow otherwise I would end up terribly depressed. A lot of my (former) friends do not understand, or even try to, but the few who make the effort to do so I truly value ……………….
Wow! i love reading all your comments, I miss not being isolated from fun, just doing things when ever!
But I have attended a free pain management course where they put you in loverly accommodation and teach you to cope and plan everyday to exercise think and plan things. I have learnt to appreaciate time on my own and quiet sometimes, I have learnt a lot about community services and now study one night a week at tafe and meet with others that care for others in the community! You soon learn a lot about services and my doctor has found a scheme to get you a whole team of professionals to keep you moving for next to nothing.
I am happy to work part time and volunteer a couple of days a week and then crash on the weekend! I love feeling okay and not guilty for having days off and not working 24 hours a day like I used to! i miss my fit body but enjoy walking slow sometimes and swimming in the warm pool or just going and sitting in the spa when I ache! there are small pleasures you just need to reach out and taste them. am diabetic cf/fibro restless legs just finished one of my last operations for a while and plod on with endometrisis!
but thank you for listening and sharing no one I know has this and my friends are superwoman as I was so i had to make some quieter friends but don’t want to whine always!! keep your chins up laugh at the silly people racing around trying to do it all and say been there now I can rest and change gears!!!
I miss not being able to clean and cook the way I used to. FM has caused me to slow down and enjoy life. I have read books and watched movies and knit sweaters that I never would have without FM so it’s not all bad. I always tell myself no matter how bad things get I still have a roof over my head, healthy kids and husband and 4 beautiful Yorkshire Terriers that keep me going.
I have had fibro for all most ten years. I did get my disability five years ago. I worked full time as a pharmacy tech. It’s been so long I can’t remember the old me. I can not multi task the way I used to. I do miss being super woman at times. Sleep wihtout all kinds of meds would be great. I can’t believe what I have to take just to go to sleep. I miss shopping all day. And that thing called a memory is sure not what it used to be. Everyone is different and I can see by this site there are people more worse off than myself. But in some way we are all connected by this crazy thing called Fibro. Thank you Adrienne for all you do for us!
Hi All,
Hang in there, I love ya! Yes, it’s miserable isn’t it? I wish I could still write long letters, but I can’t–but I can breathe and for that I am thankful–wish all the best of the rest to you all!
I miss a good energy level and social events. I will skip a baseball game, hike, party, etc. because I don’t have the energy or don’t want my limitations to spoil things for the rest of the group. If I do participate, I know I will “pay” for it later, with more soreness/pain, and much fatigue. I’m 55 yr. female and wonder/fear what I’ll be like at 75 yr.!