Because it took everything I had not to scream at the top of my lungs, "That is what I have felt like for eight years, but worse, far worse! Could you imagine eight years? Eight years? Do you think you would survive it? Do you?" Then I had to get a grip. This is a supportive and dear person in my life who doesn't challenge my illness, it's validity, any of it. She takes me at my word and loves me anyway, and had clearly done nothing wrong to deserve this outburst. As I settled down a blanket of maturity came over me. I felt satisfaction in knowing my friend doesn't know the hell of my illnesses first hand. I wouldn't wish it on anybody. But I also felt proud, because I've survived something insurmountable and damn it, I'm just strong at this point. There is no reason to "prove" my misery to anybody because I ain't seeking approval. C'est la vie, it is what it is, my life I own it. Ramming my truth down her throat wouldn't do anybody any good. So I kept my mouth shut.
My dear husband, however, wasn't quite so lucky. He hurt his knee carrying some stuff down the stairs. It got him bad and for six to eight days he bitched and moaned about it continuously and was a total grouch. After a few days I asked him if I could be honest. "Sure," he gulped, and gave me a suspicious look. "I am so sorry you got hurt. I am. But I have to tell you, your constant complaining made me realize it was really bothering you, you were really in pain. And you know what I thought?" I could all but see the look of reluctant engagement on his face. "I feel bad, I do," I said. "Get on with it," he said back. "Well it sucks you are in pain, but is a good reminder to you when I am doing nothing but kvetching and moaning this is the kind of misery I am in. And it is hard to be nice or do anything but focus on it." And I do have to say he took it quite well, he really did.
Thanks for joining,
Leah
No one can imagine what it feels like to feel sick all day everyday- I don't even try to explain anymore.
ReplyDeleteUnless they have it, or something a lot like it, people REALLY do not get what its like to be sick, REALLY sick constantly, with this unrelenting monster! I understand wanting to SCREAM at people! I want to all the time, but eventually I stuff it and just it end up crying! Wish I had a dime for all the tears I have cried, I'd be rich, well maybe not rich maybe just have all my medical debt paid! Thanks for sharing Leah.
ReplyDeleteCould not have said this better myself!!! :)
ReplyDeleteCould not have said it better myself
ReplyDeleteHi Leah, I like your thoughts on this tough issue. It is always difficult to communicate, but when you're in pain. Doubly hard...probably more! I know because I lived with Fibro, too, for 15 years. However, this is such an important issue, I'd love to have you put some of this up as a guest blogger on the HealthMattersShow.com. What do you say? Thanks, Cinda Crawford
ReplyDeleteBoy oh boy. can I relate to this. seems like I have been dealing with this a lot lately.
ReplyDeleteBoy oh boy can I relate. seems like everyone around me is sick with the flu and complaining about how bad they feel. I feel that way everyday. no one wants to understand.
ReplyDeleteWhat a spot on post! I don't know how I missed this one. ;) Once again you convey the reality of this lifestyle in such a deep way. I really, really appreciate your insight and all the work you put forth up keeping this blog, as well as the Crusade, and the Fun House.
ReplyDeleteYou are awesome!
Thank your for helping me realize it's only natural to start getting 'a bit perturbed' when loved ones complain about pain. I always wish them to feel better w/ some advice to help my them. Recently, I was in a minor car accident which makes the Fibro flare big time. My husband knew before we even began dating seriously about 5 years ago about all of my strange illness's, multiple surgeries, that major pain was part of my daily life & he accepted, loved, cared, & helped me so much. Guess he's getting tired of it. A couple of weeks ago asked if he could please take out the trash, I couldn't do it that night. His soft, snide reply was 'What CAN you do'. I was hurt, pissed off, & had learned earlier in life that if your partner can't handle your medical ups & downs well, you have to leave them. Of course I got months of counseling, etc w/ my ex husband but he thought I'm a lying hyprocondriactic(sp?) being a lazy ass so had to leave. I will NEVER allow myself to be treated that way over more then a few days over something I have no control over. I love myself enough to move back to my Dads house. Turns out my current hubby admitted he was being an 'ass' & talked to me about problems he has @ work/or with his parents so understandable his patience was short. I made it clear he needed to communicate with me more instead of holding everything in which could result in a very hurtful comment to be said to me from him. He can do anything he wants too after the job. He's got 2 bands, is making a CD, a bedroom is his recording/music room, goes to practice once a week & I NEVER complain or make snide remarks about the time or money. I knew making music was his way of actually living life, not just exsisting. Hate to do it but I remind him of how much freedom he has from me. Faith is what keeps the baby steps moving forward for me. Aloha
ReplyDeleteBoy does this hit the nail on the head. My husband or my 20 and 21 year old sons believe that I have any issues. My youngest told me the other day, in one of his hateful moods, why I didn't just go get high on my drugs and leave him alone! My oldest son helps me around the house and will watch over me on the bad days. See, I worked for 25 years in the white collar industry, but was fired from my last job due to attendance issues. I finally broke down in tears at my next doctor's appointment about just being so miserable despite doing everything to alleviate my symptoms that he had ever asked of me. He finally told me that it was time to quit working, go on disability and truly take care of ME! That has been easier said than done. That was 2.5 years ago and Social Security has been a, pardon me, bitch to deal with. I am now in the final appeals process where an appellate judge will make the truly final decision whether to approve. I still have a few months to go before expecting a decision. It has been a long, hard road. My husband and I have lost anything that could be repossessed, we are on the verge of losing our home of 22 years, we have no medical insurance and we had to file for bankruptcy. My marriage and relationship withy family and friends have been irreparably damaged because of Fibromyalgia and all the associated disorders. They look at me and to them, I look fine, but I am not. Just because you have "invisible" diseases does not mean that you aren't sick. One last thing, my lawyer told me that my disability case would probably been approved during the first appeal if I were 50 years old or older. But because I was 43 when I filed, they will fight and find any reason under the sun to NOT award me the benefits that I am rightly entitled to! I worked all those years and paid my FICA every pay day, but God knows they want that to be a one way door.
ReplyDeleteI am SO here right now, at this place where I am tired of hearing other people complain about their pains and sicknesses that last oh, maybe all of a week. Live one freaking day in my body, is what I want to say to their complaining!
ReplyDeleteThank you for naming the feelings and emotions that I have. It's reassuring to know that someone out there understands.