I said that to my husband the other day. "I am sick." He is well trained to say, "I know." But I answered back, "No, I mean real sick, the kind you or other people get." To which I was given a curious look. "You better not let a person with Fibro hear you say that," he said. I laughed because I had not realized how I said it. I was trying to inform my husband there was something extra wrong with me that he could relate to and give me sympathy for. Because he has experienced it, everyone has. See I was not just extra Fibro-sick, I was sick sick, like a cold or flu sick. Somehow in my casual lingo that translated to "real," when here all I do is fight tooth and nail for Fibromyalgia to be considered real, because oh it is so very real. I was surprised by this statement and really examined what it meant. Do even I still hold prejudice against myself for "only" having Fibromyalgia?
There has been many a time and many a patient who have complained people just don't understand what it is like to have Fibromyalgia. They don't understand the disabling symptoms, psychological torment, inability to function. They have no clue what it is like to have a chronic illness every single morning when you wake up, for every single minute of every single day for foreseeably the rest of your life. It never goes away and permeates every single aspect of a person's existence. And unless you have experienced something of this magnitude you definitely don't understand what it is like.
But do you really want them to? Because if they understood they would have it, experienced the hell of it, know it first hand. And I know I personally would not wish this on my worst enemy, let alone someone I loved, cared about or knew. I think back on who I was before I got sick and there was no way I would have even begun to comprehend what this is like. We are doing the best we can, sick as can be trying to get anyone to accept how serious it is. Spreading awareness and firing doctors who diminish our illness. One small painstaking step at a time to make life liveable again. Stay strong my friends, and take heart in knowing their inability to understand means they have not suffered the way you have. Then try and find a way to not want to kick them in the teeth because of it.
Thanks for joining,
Leah
Today, I want to kick every single healthy person in my life. It's a bad, bad day. I am sick (with the flu) and between that, Fibro and CMP, starting my period in the midst of the flu, menopause symptoms, etc., I am angry. My emotions are raw and everything said to me, wrong or right, well-intentioned or not, is making me feel as if someone has used a fillet knife on me.....
ReplyDeleteI must be your twin! I'm alone with a grown daughter who has chronic shingles. I quit speaking to my family 3 weeks ago after my brother wrote a "family email" to me saying they think I don't really have fibro, I'm just depressed. I'm on private Insurance disability, Social security disability, and my Dr.'s have ...for 17yrs, written letters on my behalf to my narcissistic family. I decided to just pretend I don't have a family. My cupboards were bare for 6 weeks. I just kept ording pizza, chinese, whatever I could to get by. Of course I'vegained 8 lbs....but who cares at this point. Just know you aren't alone! I care.
DeleteI am very sick with nausea and dizziness for 3 days now I am bedridden. I am on disability do to chronic fatigue. I feel noone understands this illness everyone just says exercise and eat right. I have 2 grown children who think its in my head I just feel very alone and I am sick of being ill. I cant even stand up for 2 days and I had suicidale thought yesterday.
DeleteAnonymous Apr 11, 2012,
DeletePlease please call somebody or go to the hospital if you are going to harm yourself. I have been there. It is horrible and very real, pure pain. Nothing but pain. LIFE WILL IMPROVE, THINGS CAN GET BETTER. Please don't give up. Seek medical attention. I am praying for you.
Leah
This title made me chuckle, because I've been saying the same thing all week. Trying to get over a hellish sinus infection. I love your blogs.
DeleteI find myself doing the same thing, Leah. Like what we have isn't real! Sometimes I'd like my husband to have it just for a few minutes so he could understand.
ReplyDeleteChelle
www.lifeonthedomesticfront.blogspot.com
Oh that would be so excellent. To just be able to reach out and touch someone...especially doctors... so they could feel the bone grinding torture we feel for just 5-10 minutes. That would be miraculous.
DeleteI've often thought that myself! If only my boyfriend, my family and friends, and my doctors, had ONE SOLID MONTH feeling the way I do day in and day out, and have felt for years and years now. Why a whole month? Not because I am cruel or feel vindictive, but because 5 or 10 minutes and it goes away isn't something most people remember. Because a week or even 2 feeling this way might be remembered like a bad flu, awful and incapacitating, but it too goes away, becomes a dim memory. Because a WHOLE MONTH of living and feeling this way every day and night feels like something is really, really WRONG with you, like maybe you're DYING, but your doctors aren't taking you seriously and your S.O. (Significant Other), family, and friends aren't terribly worried, because there are no external signs, no internal scan or lab results, that connect to a diagnosis of some accepted disease process. Because a whole MONTH of feeling this way isn't something they would soon forget. In fact, they would probably wonder and worry a little for the rest of their lives about just what the heck caused it and if it will come back. Because a month would instill a real sense of EMPATHY - not an external understanding but an internal KNOWING of how it feels.
DeleteI gots me the chills. I love reading your posts! You have such a knack for conveying exactly what this torment is like, while sprinkling a dose of hope in there as well. Thank you!
ReplyDeleteI have said the very same thing to my husband.
ReplyDeleteWhen I said I was sick, my dad once asked me "Are you girl-sick, Helen-sick or sick-sick." It made me laugh when I translated it into "Do you have your period, is your lupus flaring or do you have a cold?" :P
ReplyDeleteIts funny you mention this. I have cold and flu-like symptoms too. I caught myself saying that I am legitimately sick...like lots of other people. I wish the fibro. would go away as easily as this cold.
ReplyDeleteI feel like I fell into the Fibro hole months ago and can not crawl out.... along with a sinus/alergy thing that will not go away. I have slept and laid around so long that I am sick-sick-sick. The last couple of nights I even dreamed about being sick. I had a shot of toradol that eased things long enough for me to get a second wind and WHAM......... I have cried, cried & cried, it helps release a little stress but other than that I feel emotionally, physically, mentally exhausted. I am alone, no husband, no family that really cares, I have family, they just don't care except for my daughter and she has fibro also and I dare not burden her too much, as I am one of a 3 that she has to depend on. I know that the only people who really know how I feel & hurt, hurt the same way that I do. I made concection with an old friend last week and she said Oh I have that too (Fibro). She asked about who my doctors were and what I do for it. I told her minor details as I could tell that things did not sound right. When I asked who she saw and what she did. She replied I just deal. My reaction........ GIRL YOU DON'T HAVE FIBRO!!!!!!!!!!! I can truly say that I have very few people in my life that understand or care. And sometimes that is the most difficult part. Knowing that they have never even taken the time to read and article or inform themselves about my condition. I have a father, brothers, but I do all my grocery shopping and handle everything alone. If my food gets low as it did the last week, I eat whatever till I can drag myself to the store and my cabinet and frig was bare last week. Only people in my condition know what I am talking about. It hurts to know that I have family but I dare not ask. I seldom leave my house (doctor, grocery, drugstore, daughter) my daughter calls crying and no matter how bad I feel I havemanage to pull myself together for her, no makeup, hair not done in days, pull on some clothes (Thank you God) and go bacause Mom always makes things better. I know her pain. And I feel her pain. I pray everynight for her not to suffer as I do and I try to ease her stress as much as I can. So yes Leah and all the Fibromyalgia/CFS suffers I know your pain.............
ReplyDeleteWow I know your pain!! I hate when I get sick like the rest of the world. My family is pretty good about the fibro but they do not understand why it takes me twice as long as them to get better. Like right now, my daughter and I had strep throat she got better in 3 days and 2 weeks later I do not have the sore throat but have stomach problems and the fatigue is so unbearable. I go to sleep by 9pm wake by midnight sleep an hour or so and wake again, then I get my daughter to school at 7am come home and sleep till noon at least. thats on a good day if I dont have work. but since the streph I am soo tired even more all day havent been able to work i am so tired and can not consintrate at all. I was sent to the er the other day because of stomach problems that have not resolved in 2 weeks. now on top of the fibro, chronic lyme, asthma, bipolar, migrains, gluteton allergy, heart murmur, I have cysts in or on my liver. which translates to more tests. Some days I hate normal people. If it wasnt for my beautiful normal daughter I dont think I would be able to deal.
ReplyDeleteI was also on cymbalta for years, getting off was worse than getting off hillbilly herion, (oxi)
I tried weaning but it didnt work and I did it the right way a little at a time still thought I was dieing and it never really helped with the pain or depression. The only thing I live off of now are my percs every 6 hours. I am lucky though because my side effects a limited to constipation which I counter with prunes and lots of fruit.
I just wish I would not be soo exhausted all the time.
I am so sick of my family telling me i need to see a pschologist or someone to "talk to" because I seem so depressed! Yes i'm depressed i have no doctor who believes me and wants to treat me, and only get thrown to other doctors from them! Then I have 2 small children who I can't even help tye their shoes in the morning because of my swollen, numb fingers!! Every FM med i've tried gave me side effects that made me want to die! I can't get one doctor to even prescrobe me i strong pain pill for the longest, worst, flare up in my life!! Not even a weak one actually NONE! That tells you there no dr's belive me to tell me yep, its Fibro but can give you NOTHING for the pain. Then i want to vent to my fanmily and not put on my normal fake mask for the day so they see my pain and think im nuts!! AH!
DeleteAw! Hope things and your condition will get better!
Deletewhat a sisterhood this is. I can relate in everyway. I am currently still trying to work but it's crashing down.. I went to the doctor the other day and I had a fever of 101.5 and they said I had an infection that I had obviously ignored for a long time. I couldn't really even tell I was "sick." I am trying to so hard to keep working and they are being very accomodating with me but I literally come home, lay down, and do not move so I didn't even recognize "real sick" when it was knocking on my door. Now, I am on all sorts of meds to treat the infection (and an ulcer to boot) and somehow I have to get back to work. I don't see how I am going to do it but I don't have a choice. I don't even know what I am going to do but pushing til you are "real" sick and not even knowing the differance says to me that I have got to make some changes.. Sorry I came off self centered.. poor me. I do my best but I know you all understand.. finally.. thank God.. you do understand. I found myself here. I don't know how to do tomorrow right now but who does..
DeleteSo glad i came across this blog. I have had fibro now for around 20 years. My biological family (father, mother, siblings) decided that my fibro was all in my head and wiped their hands of me years ago. My relationship with them was always a toxic one anyway so no great loss really. I too have been down that road of self harm and suicide attempts. I can happily say i haven't self harmed in any way now for 3 years. I have me/cfs/fms/tmj/ptsd/bpd +++ But despite all that i refuse to let it get me down for more than a day at a time (unless i'm in massive flare) I think i can allow myself to walllow a little then. Thanks for letting me tell my story.
ReplyDeleteI also am a survivor of childhood abuse - sexual, verbal and physical. I am certain this contributed to my getting fibro. And my first marriage was a disaster - married an abusive alcoholic. I guess you could say i jumped from the frying pan into the fire when i married him just to get away from my family. We had a son who unfortunately passed away at one year of age (SIDS) But on a positive note i now have a great husband, 2 adult children and 2 wonderful grandchildren - all of them understand and appreciate my limits and my illnesses.
ReplyDeleteLove how you wrote that. I feel the same way. I want so bad for others to understand me, but at the same time that would mean them having to go through what I do everyday.
ReplyDelete