Do any of y’all suffer from chroni guilt. I feel guilty all the time! I feel bad because the house isn’t as clean as it used to be, because I don’t feel as social as I used to be, because my daughter can’t have her friends over as much because I feel so bad, because I don’t get to the store, the list is neverending. Sometimes I feel like I will never catch up. I look around and I am overwhelmed by everything that has fallen behind and then I just do nothing. I start thinking of all the steps necessary to complete a task and get so discouraged I never begin. Then on my good days I overdo it and have flares that last ages. I also get sick a lot from a weakened immune system and can’t fight off the infections. I also have terrible asthma and every resperitory infection takes me weeks to overcome. I wonder if I would have the strength to be as supportive as I expect my family to be of me. I hope so. I hate being so dependent and such a drain on everyone. I miss the days when I contributed.
Yes, I do feel guilty. And other people help: “your crazy” b/c I’m behind on paperwork since the pain hit so bad in Feb. “resting!”, when someone asks what I did on Saturday. “Your tired! My lawn is blah blah and I mowed the whole thing yesterday!” alll the nonverbal communication when I complain or answer honestly about how I feel…and on and on.
And Guilt tells me, “that’s why you have this disease b/c you care too much about what others think off you”
Oh yes, all of the above. Plus I feel guilty about not being more assertive for many years when my docs brushed off and trivialized my symptoms. I was like “Oh yes, I guess they’re right, if I lost weight, exercised more, ate better blah blah blah…” If I had said “NO, find out what is wrong with me NOW” maybe I wouldn’t be in such bad shape today.
I've adjusted to a lot of this at this point.
And Seenie, I've gotten more assertive about things with my health, including following up on things that concern me, even if they are pooh poohed.
I’ve gotten more assertive too! Finally. Old too soon, smart too late.
I want a “like” button Seenie, so I can like your comment. It’s so hard when they are basically telling you it’s your fault. If you would just change your diet and how you “think” about this, you wouldn’t have an autoimmune disorder!
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Seenie said:
Oh yes, all of the above. Plus I feel guilty about not being more assertive for many years when my docs brushed off and trivialized my symptoms. I was like “Oh yes, I guess they’re right, if I lost weight, exercised more, ate better blah blah blah…” If I had said “NO, find out what is wrong with me NOW” maybe I wouldn’t be in such bad shape today.
Most of us (parents) don't get it until its too late so trust me on this, and it applies even whtiut PsA in the house (We raised nine and are still at it with a special needs granddaughter)
Kids don't notice the house. if they do they are old enough to do something about it.
Boring women have immaculate homes. (they are boring because by the time dad gets home mom's too tired to be anything but.
I deal with college kids. it would scare you how many call home daily sometimes several times. ican tell which ones came from super parents (not to mention the helicopter parents) They are the ones lining up at my door at the end of the semester when they learn the grade they earned is the grade they get and as far extra credit that comes from credit card companies.
Buy in bulk, thats how middle school and HS students eat. The cool house is the one where the kids feel at home and the parents leave them alone (although unknown to them the parents aren't missing a thing) You are not an entertainment committee. A case of potatoe chips, a popcorn popper, and HUlu+ or netflix and you will be parent of the year.
Husbands are pretty easy to please too. If they are not make it known they need to please you. (And you know how to do it, he married you after all)
I don't mean to be crass, but intimacy can last an hour or it can last minutes. There is always time for minutes. Miss the minutes and the hours won't come. Men are visual take advantage of it. My wife doesn't look any different to me today than when I met her in 7th grade. That attraction never goes away.
I'm about half kidding but relationship and time together is what matters. Nym and some of the other moms can help you out with specifics. They have activity bags etc.
That is exactly how I feel. My family has been understanding and supportive, but I still feel guilty about everything, the house, the kids, not cooking when I'm exhausted. Just everything. I have always been the doer and I feel lazy when I come home from work and just can't keep going like I used to do.
There are times my feet and hips hurt so bad that it is all I can do to walk. I should use a cane, but when I do I feel like a fake. I don't need it all the time so I feel like I'm faking when I do need it...talk about a messed up head...
Well just know that you are not alone. I have been trying to not feel so guilty every since I realized that the only one making me feel guilty is me.
There used to be like buttons …wonder where they went? Oh well, thanks anyway for saying so. We women tend to assume it’s their fault when there’s a problem. I know what you are saying about the cane. I still have to engage in firm self-talk when I take the store scooter at WalMart. (“You need this because PsA has wrecked your feet and you don’t want to be lying on the couch in pain this evening.”) Crap! As if I need an excuse to look after myself! I think I’m getting better at it. Hope so, anyway!
Clr said:
I want a "like" button Seenie, so I can like your comment. It's so hard when they are basically telling you it's your fault. If you would just change your diet and how you "think" about this, you wouldn't have an autoimmune disorder!
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Seenie said:Oh yes, all of the above. Plus I feel guilty about not being more assertive for many years when my docs brushed off and trivialized my symptoms. I was like "Oh yes, I guess they're right, if I lost weight, exercised more, ate better blah blah blah..." If I had said "NO, find out what is wrong with me NOW" maybe I wouldn't be in such bad shape today.
I think we hold certain expectations for ourselves then we can be our own worse critics. I see my friends who are completely healthy who cannot seem to get a task accomplished or clean the house. I guess I pick and choose my battles.
I do not have children so I cannot state how I would feel with this situation but I tend to agree with tntlamb.
For myself, I decided that the yard doesn’t need to be perfectly cut, weeds all pulled, and porches swept. My neighbors are very tidy so I felt that I needed to live up to that look. Now, I just do not care. If someone doesn’t like it, then mow it for me now. Beating myself up, just makes me depressed. We all know that we do not need more of depression.
I have come to a conclusion… If I get up and walk on the treadmill then shower, my day goes so much better. I was always the resourceful girl that others came to for problem solving and conflict resolutions. NOW, I know my limits, stick to my plan and slowly check off my “to do” list. AND “No” is an okay word to use. 
Cissy,
I am starting to use a cane and know what you mean about feeling "fake". I tell myself I don't need it to get somewhere but I probably will need it to get back. I have more energy and less pain when starting out on an "adventure" but usually am dragging on the way back. Try it and see if it works for you.
Oh yes, family guilt and guilt about using "helps" like the cane, motorized scooter in stores, handicapped parking. it is hard for me to really believe I NEED these things - just like I need more sleep now, I need to nap, I need a recovery day or two after a really busy day or week. I can be a better mom, wife, employee if I take care of myself first.
i empathize. it would be weird if someone saw me when i needed a cane, then two days later i was walking perfectly normal. this condition, itself is just plain weird.
Cissy said:
That is exactly how I feel. My family has been understanding and supportive, but I still feel guilty about everything, the house, the kids, not cooking when I'm exhausted. Just everything. I have always been the doer and I feel lazy when I come home from work and just can't keep going like I used to do.
There are times my feet and hips hurt so bad that it is all I can do to walk. I should use a cane, but when I do I feel like a fake. I don't need it all the time so I feel like I'm faking when I do need it...talk about a messed up head...
Well just know that you are not alone. I have been trying to not feel so guilty every since I realized that the only one making me feel guilty is me.
My husband just left for work and I told him my goal for the day was to call the dentist and schedule 2 appts (me and one of the kids). He said "that's your goal for the whole day?" I felt a brief twinge of guilt, but he knows that when I feel better I'm like a whirlwind sorting through the piles of papers around the house and in general motivating everyone else in the house to clean and get things done.
You can let the guilt eat you up, OR do a paradigm shift and cheer yourself on every time you DO get things done. For me, a bad day where I don't do much (like today) is a placeholder day. It's not anything really, just a day I get through. So I will cheer myself on for the dentist appts, and anything else I get done.
Hey, y’all. I have spent the last tow days fighting the worst migraine of my life. If it wasn’t so horrible, it might be comical. It includes a drive by shooting where the victim was treated like a rockstar by the nurses and I puked my guys up in the next cubicle while my fluids didn’t run… And did I mention that I waited (throwing up the whole time) to get back there for over two hours? The guy had only been out of jail for under a week and it was 3am, yet he insisted it was completely random. They sent me home with minimal treatment and a pat on the head while the gunslinger got real painkillers. So this morning I woke up with the migraine and throwing up and had to go to my GP. Thank heavens for her. Feeling some relief 24 hrs later. I will give truly thoughtful and not whiney reply to your posts tomorrow. xox
I'm thinking you have hot on something. More than once I have wanted to shoot someone in the ER...............
Hahaha!!! Good thing you weren’t there last night! I am still fit to be tied!
TigerGirl and tntlamb,
You two know I have to respond to this situation due to the fact that I am an ER nurse. I can completely understand your frustration, believe me! When you feel so horrible that you have to come to the ER, your migraine is miserable! I have no doubt!
Please read what I have to say with the intent that I have no sarcasm intended and I was not there working in this ER!
In the ER, the nurses may appear a certain way because 1) It is our coping mechanism 2) we are trained to categorize or prioritize the patients. You may not see the fact that I have 4 critical care patients at one time. I may appear that I am on the computer or eating at the desk. In reality, I am at the computer placing your drug allergies, history or medication before I can even give the medications you need! We are frustrated with this system but it is how it works. As for eating, I am cramming a sandwich or protein bar in my mouth because I do not get a half hour lunch break in a 12 hr work day.
OR you may see us joking and laughing (all appearances) but we are doing this because in the other room, I just did CPR on a child who didn’t live (just an example). I don’t have time to cry. I am not calloused nor is any other ER nurse that I have met. We all have empathy. I know that the family is grieving fiercely. I have to go on. I have to divert my sense of loss until later when I can cry alone. Plus, would you want an ER nurse who was hysterical and crying being your nurse?
We are trained to prioritize as I previously stated… You do NOT want to be first in line in the ER, I promise! You were in horrifying pain and I am not minimizing this by any means! You would have been one of my top priorities by all means, unless someone was not breathing or in cardiac arrest. As for the type of patient you described, I wasn’t there and I can’t explain that. Most of the time, prisoners make us uncomfortable and we tend to try to move any jack holes out quickly for obvious safety reasons. Plus, other patients don’t need that burden while they are sick.
All in all please don’t misinterpret me as in, I am dismissing how horrible you felt. I am sorry for your bad experience. I wish I could have been your nurse.
I think if you read around here a bit more you will learn a bit about folks. I was a combat medic in ranger unit during an actual war and spent years working in the ER and have the scars to prove it. Damn near bled out once from a 17 year old prosti who had a knife hidden gosh knows only where.
On the whole most of us have learned to stay away from the ER no matter how rotten we feel. Its not that they don't care but the critical word is EMERGENCY. There really is very little they can do (or should do) in regards to out "disease" From time to time situations arise where we do need emergent care, but they are rare.
We can do a lot to help ourselves. Call our doc, tell him the problem and have him call ahead usually we can be handled in something less than the ER. Nothing worse than spending 2 grand for a pain shot (there is time when I would have paid 10) Standing order isn't a bad way to go either. I can get a shot of torodol almost on request. Valium is a little tougher. There are minor ER's (discount doctors) all over most towns that you can make arrangements with.
The thing to keep in mind is that ER's are owned by hospitals and hospitals are now run by mid management healthcare administrators who also call themselves quality control managers. They develop protocols for everything. If you go in with a migrane, you might get help, but you are just as likley to get a $10,000.00 work-up taking several hours (Hospitals are procedure driven) What if it were a tumor??? Having a chart and PCP call ahead can eliminate some of that.
I'm sure Sarey has some other suggestions............
I wish you could have too! I never think poorly of the nurses and doctors in ER bc I know what it is to multitask. I taught middle school for 14 years. Not that I had anyone die on my watch but I did have a problem a minute, angry parents, and no breaks. I am quick to write a letter to corporate for any employee who goes out of their way to be helpful or extra kind to me. This was just unreal. They were falling all over this man. He was saying the f-bomb repeatedly for two hours and they were laughing and hanging on his every word. He was two feet from me. I am sorry if I offended you because I often hear people put teachers down and I think of you only knew. This was nothing like that. These girls were enamored with his badboyness. “Get away from him you home wrecker! This here is my mannnnn!” It went on all night.his mom was there, but she left him to the nurses and went outside.