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Does anyone else on here have problems getting family memebers to understand the limitations that IC puts on a person? I am catching some flack from family members because I don't feel up to making an 8 hr. drive to attend my aunts funeral. I just spent 6 weeks getting over the flu and don't have my energy back yet. Plus the 2 rounds of anitibiotics I had to take to get rid of the flu has my bladder flared up. Sixteen hours riding in the car just doesn't seem like the thing to do right now. I feel really torn about it.
seriously
yeah. i try and explain that im really tired all the time and that i never feel great, so no i cant come home and do a million things around the house. and no, im not staying up till 4am to get in the top 10% of my class. most people just treat me like im lazy or whiny. im in grad school and it often requires late nights on team efforts and last week i just said, sorry bitches, im going home, i need to sleep and read my book. they totally guilted me, and it sucked, but honestly i'm not in the same shape as they are. i cannot eat pizza and drink 50 cups of coffee. nor do i want to.
while it is sad that your aunt died and im sure you'd rather to go to the funeral, you have to take care of your body. in the end, you know better, and you need to think of this as an investment in your future health. this corresponds perfectly with the econ chapter i just read minutes ago. think of it as a rise in interest rates--its going to decrease your current consumption of normal activities now, so you can have more opportunities in the future. essentially the opportunity cost of your energy has risen, so its more costly to consume it now. as a rational economic actor, you're going to save more now.
unfortunately, its rare that people understand what we're going through. even my boyfriend, who cooks for me, makes sure i can eat things--he doesnt get it when i say im too tired to do anything--like i feel like a vacuum has sucked all of my energy out. or im flaring, so i just want to sit here and cry. so, you're going to just have to get used to looking selfish, weird etc. but you're not alone in this, even people that don't post can agree.
the other day, i explained that i didnt eat baby carrots cause of the chlorine and the person i said this to straight up made fun of me. do i care? yes. did it hurt my feelings? yes!! but, he did it, because he genuinely doesn't understand and hasn't needed to because he's 24 and healthy (for now). personally, i get through this by realizing that in the end, their bad habits are going to get them. it may seem misanthropic, but whatevs.
so girl, you stay home, you chill out and you invest your energy for later. and while it sucks that they're making you feel bad, having just taken a THREE hour car ride myself (and it sucked), i cant imagine how you'd do EIGHT. your aunt must have been sick before she died, so im sure she'd get it.
sorry for the diatribe, but this makes me so mad for us. : (
I am
sure MOST of us can relate to family not understanding. I am sorry for you... and for all of us that we have to deal with this, on top of misrable pain.
I totally get all that researchnerd was saying. She is right.
You need to stay home and NOT feel guilt in the least. When you start to feel guilty, try some self love. Try and be the person you wish you had comforting you and saying "Its Ok, just rest! You need to just relax and give yourself a break, I understand that you are having a hard time, and don't feel good. I'm here for you!" Be that person to yourself as much as you can. This mind set has helped me of late.
Take care
some heart advice
One BIG lesson IC and ill health has taught me is to take care of myself, to honor my needs, to put me first. Again and again, I forget this... and then again and again, things keep happening that give me the opportunity (though it feels like an obstacle at the time) to choose differently, to put myself first... And I usually don't see it til afterwards. It's a work in progress. I see the deep-set, almost unconscious patterns that make this so hard to break, so I try to be kind to myself. The guilt and self-attacking that I engage in is toxic to me... and it isn't really even real guilt, like the true meaning of guilt, b/c I'm not doing anything wrong taking care of myself, exactly the opposite. But I know, it's a hard lesson. But if you're an intelligent, empathetic and heart-centered person, as most of us are coming into this (it seems like the nicest people get this freakin disease!) or at least certainly after, trust that you are smart enough and connected enough to know what is best and follow that, no matter what the saboteur voice in your head, the culture or other people in your life say.
One thing that also helps screw my head back on straight: pretend it's a good friend who has this problem, and that she's asking you what she should do... it usually then becomes clear that you'd immediately tell her to take care of herself (as we've all told you here). Funny how when it's ourselves, we hold it to a different standard... at the expense of our own self-care.
One last thing... through this experience I've learned that most people, probably 99%, cannot -- and will not -- understand what we're going through. There is just no way unless you've been through it. Even having a bad disease or facing cancer I think is different in many ways. B/c even with a bad disease it's not stigmatized/misunderstood/questioned like IC, and you often don't have a treatment that makes you as equally in pain/discomfort/crazy like this one. And with cancer or things like that, I could be wrong of course, but there's an immediate sympathy from others, like they get it instantly that it's BAD.... and they'd never talk to you the same or expect you do ride 16 hrs if you were doing chemo. Part of it is that this is an invisible illness too, and if people can't see it, it's different unfortunately. Doesn't give them license to hurt us, but seeing that it comes more from a place of true ignorance than the insensitivity or cruelty it can feel like, can help it sting less over time. I do hope this helps.
IC-Hope
I could not help telling how much I agree with you on: how most of the people don't really understand what we are really going through so long they don't go through the same path/protocol. I think beside from the disease pain (most of the people going through a chronic ilness understand this part), the detox pain (but this part is a different experience) is the one making the protocol crazy. Though, the long term results are very beautiful, as it is mentioned at this article Matia sent today.
Family
Thanks for the kind words. I have had this disease for over 40 years, and these family situations never fail to upset me and make me feel guilty for not doing what others expect of me. The person who said "think that you are giving advice to a best friend and then follow it yourself" rings true. Strange but I had JUST advised another IC friend to for-go a trip when she was having trouble making the decision for herself. It was easier for me to see the answer to her dilemma than to see the answer to my own.
The other family members who are going to attend the funeral have a 4 hr. drive as opposed to my 8 hr. drive. I am the one who lives the furtherest away, and I am also the only one who has a chronic illness. None of my family has ever been very understanding of my chronic health problems. You would think that family would be your best support system, but that isn't always true. I've struggled with this for years.
I can sympathize with the person who said a 3 hr. trip wiped them out. My son lives a 3 hr. drive from where I live, and it is all I can do to make that trip once in awhile. This disease beats a person down physically as well as mentally. When you don't have a good support system in place, it becomes unbearable at times. I'm trying to focus on other things, but it is hard. Even my husband, who is usually very supportive, doesn't always understand. How can a person who lives with you day in and day out and sees the suffering be so blind sometimes to the situation? My husband thinks I can make this trip if I really put my mind to it. What would the toll be on my physical health not to mention the mental stress? Where is the fine line that separates one person's need over the needs of others? To quote a Star Trek move, Spock said when he sacrificed himself for the good of others, "the needs of the many outweigh the needs of the few." How do you know where that line is? How do you know when to put your needs first or when to put the needs of others first? Is there any cut and dried answer to this, or is this one of those "shades of gray" areas?
Luckily spock is science
Luckily spock is science fiction..we HAVE to learn to take care of ourselves first and whatever we have spare can go on others. Of course whilst we're in recovery, there's not much, if any spare, so I tend to really go for it when I have just a little more energy to give my son a kiss, tell my partner I love him and maybe buy my mum some flowers.
Most if not all of us are here because we've failed to look after ourselves - feeling pressures and guilt and the need to achieve is what has stuffed us up in the first place.
I'm trying to learn this self-care regime myself and what others said before rings so true - I have to actually tell myself to take it easy and rest and just be nice to myself.
I haven't figured out how to deal with family and friends yet but it seems the more I protest the more it angers me so I just keep it to myself and try to stay strong in the knowledge that it's my life and I don't need to explain myself to anyone - end of.
Some of the sentiments here
Some of the sentiments here have moved me to tears, IC Hope put it so well, why does this disease happpen to the nicest and most unselfish of people? It really must be because we treat ourselves so badly, do not love ourselves or respect our own needs. To quote Catherine Simone 'IC is here to slow us down, to put ourselves first'. If we can learn anything from having this, its that we put ourselves first from now on.
The reason why I am nearly in tears is because I realise how lucky I have been with my family, my husband and even my friends. Maybe its because I only got sick last October, maybe its because I am 40 and everyone only saw me as healthy (which I wasnt, I know that now) and active for a long time. I have been so blessed with their reactions to my having to slow down now, to put myself first. It should be like that for all of us, it really should be.