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With so many of us in severe, extended flares right now, it really got me to thinking about the things can help us to reduce our symptoms as much as possible. It also got me to thinking about the good advice I've gotten from friends (and fellow patients) who have been disabled much longer than me. The long and the short of it is that I wrote this essay, and I hope it helps!If you'd like to share it with anyone, please feel free to simply send them the link to it!-------------------------------------------Making SacrificesA "Daily Life Essay" by M&M© 2007Sometimes, when you have a chronic disability, you have to make sacrifices. Some of the sacrifices you make aren't optional...If you can't walk anymore, you use a wheelchair, or you're bed bound. If you can't drive anymore, you try to get a ride, or you're house bound. If you can't work anymore, you're forced to lose your job, and you hope to win your disability case. Those are the kinds of sacrifices you don't get to decide on. Those sacrifices are chosen for you.But sometimes, there are sacrifices we have to make personally, things we have to choose to give up. Choosing to sacrifice some activities, and maybe even giving up some friendships, doesn't necessarily mean your illness is controlling you, nor does it mean you are getting more and more disabled. Sometimes, deciding to cut out certain people and activities can actually make you feel more in control of your disability, and can leave you with more time and energy for the things and people who are really important to you. My personal experience with deciding to cut out various activities and people from my life time after time is that I feel much more in control of my disability, and I have more freedom to do the things that are more important to me. I think making some sacrifices can be a very good way to manage your disability, especially as a long term coping strategy. I think the key is this: if a relationship or activity takes more out of you than what you get back from it, it's time to sacrifice it. If you have a friend, for example, who is ok to deal with on a good day, but sucks the life out of you when you're in a flare...It's time to start distancing yourself, and see how it feels.Sometimes, making a sacrifice doesn't mean cutting something (or someone) out of your life completely. Sometimes, a little creative thinking will make all the difference. An example: if gardening has always been your favorite activity, and you'd work in the garden all day, but now, gardening for an hour knocks you out for a week, it's time to get creative.Try gardening for 15 minutes, or 30 minutes, and see how your body reacts. Maybe gardening 30 minutes is doable for you, but maybe you can only do it every 6 months. That's a big sacrifice! You're sacrificing your favorite activity. But, by getting creative, you don't have to cut it out of your life completely, especially if it's an activity that is good for your soul; if it makes you feel happy. Now, you still get the fun part of gardening, the benefits from it, but you're also still able to be conscious and function the next day.By cutting down on the time you garden, you've sacrificed the "bad" part of it (the part that makes you sick), but you've preserved the "good" part of it (the part that makes you feel refreshed and happy). You can apply the same principle to anything else in your life that really weighs you down. Maybe you're in a relationship with someone (romantic, or simply a friendship) who is fun when you're feeling ok, but who really can't handle you in a flare up. It's true, our disabilities (ME and Fibromyalgia Syndrome) are different from most other chronic disabilities. Most chronic disabilities do not change. A lot of disabled people have the same disability every single day. A paraplegic remains a paraplegic everyday; a blind person is blind everyday, etc. But our disabilities are always changing. One day, we can walk around the block, a week later, we can't walk to the bathroom. One day, we we're cleaning the house, a different week, we don't have the energy to even eat. You get the idea.We'd all have to admit that even we are surprised sometimes by how our limitations constantly change. We're surprised at how varying our symptoms can be from day to day. Of course, we do eventually adjust, because we have to. But some people can't adjust to that changeability, I think. And that's something you can't know about someone in the first 10 minutes. To really find out if someone can handle your varying disabilities, it takes time. It takes time for our ever-changing bodies to really "show their stuff", so to speak. That means, sometimes, we may find that the person we've known for almost a year just cannot deal with our changing limitations. Once we've realized that, we are obliged to deal with it, and make the tough decisions.One thing I have learned is that understanding friends do exist! They do! There may not be a lot of them, and they may live in other places (even other countries) but they are out there. Now, of course, I have to say, this doesn't mean that even our most understanding friends won't say something rude and hurtful from time to time. No one is perfect, and we can't expect another person to be in tune with our bodies 100% of the time. So, watch for patterns. If you find that each time you go into a flare, the same person is causing you to feel worse, instead of better, it's time to think about making a sacrifice. If your friend accidentally says something thoughtless to you a few times, you probably won't need to make any sacrifices there. In the long run, we are better off surrounding ourselves with people who support us all of the time, especially during bad flares.There's no need to be hasty when deciding what things we might need to sacrifice. But remember also, that when you're severely disabled, with very limited physical and emotional resources, it is ok to be selfish. In fact, it is something you must teach yourself to do. Being female myself, I know that women are taught from a very early age to be nice, and take care of others. That is a lovely quality, and beautiful way to live, but it's also important to remember that we are not the "average" person. That means sometimes we have to disappoint people, by telling them "no", or spending time away from someone who doesn't understand your flare. And it is ok to disappoint people in that way sometimes.And I imagine men might find themselves in a similar situation. They're expected to "take it like a man", and not complain or say they don't feel good enough to do something. Rabbi Schmuley Boteach, from TLC's "Shalom in the Home", once said; "Insecurity is the inability to say no." So go ahead, become self-assured! It's a skill each of us has to learn eventually. And, when dealing with a chronic, ever-changing disability, the sooner we learn it, the better we'll feel - emotionally, because we'll feel strong and proud of ourselves for standing up for our own needs; and physically, because we've quit wasting our energy on things that we really don't want to do. We can't afford to be short sighted with our bodies. Sure, you might be able to push yourself, and bake those 5 batches of cupcakes for the fund-raiser tomorrow, but how is it going to affect you next week? You're the only one who can consider that, and you're the only one who WILL consider that. Life is short, and we're limited. We have to live in a way that really counts.
 

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Thank you for posting this. It really lifted my spirits. I especially agree with the part about women in specific being taught to put everything and everyone ahead of them. But I' have seen in with men too. Especially the self care part. I just don't think the majority of us care for ourselves enough. In this past year, and especially the last few months after being hospitalized, I've really learned that making our needs priority whether physical or emotional are not selfish.. they are necessary for us to function. I don't ever want to have to go into the hospital again, and I learned there that the only way I was going to prevent myself from going in again was by making my needs priority. By doing daily self care things as simple as a bath or stretching or cuddling with my cats or laughing, to as big as asking my sig. other to massage me or care for me, or telling my friends/family that I can't do the things they want me to do (like walking or just doing lots of things in one day). It's been very hard at times because people refer to me as being so isolated now. They say, "why don't you just get off the couch, why don't you do some exercise?" They think that those things will fix me, and can't understand that I am trying my best and that right now, those things are hurting me more than helping. But I really have to be self-centered to get through this rough spot for myself. And I've noticed, for the first time in my life, that when I am clear with my needs to people in a gentle yet firm manner, I gain much more respect from them then if I go ahead and do what they asked me to do and end up complaining throughout the entire time. And, I've had to make some serious sacrfices this year like withdrawing from a dance class, taking a medical leave from college, postponing my internship, and losing connections with certain friends... But I have also found even closer friends in the process who can relate to me, I've educated my family and partner about my issues and they have in turn, gained more of an understanding of me and are much more gentle rather than pushy with me.Some days I really wish I was well. I wish I could just go out jogging like "normal" people, or do the things I love like dance classes or taking long hikes. But then we I take time to think about my life, I realize that those things have always been a struggle for me, just in different degrees, and that maybe I was pushing myself too much back then to fit into something or someone I wasn't. For example, I used to be a lifeguard for several years.. but even when I was in the best shape of my life I couldn't run more than a half a mile. Also, I ended up having some panic attacks/hyperventilation when I used to play soccer for years. And I have never been able to touch my toes... So it gets me thinking that maybe I have just been this way my whole life and wasn't taking time to admit that to myself, and instead I was pushing myself to a point that I could've really hurt myself. Which makes me feel even more at ease that what I'm doing right now in my life.. taking these baby steps.. is where I am supposed to be. That maybe I can't run a mile or hike with my family.. but I can still enjoy walking slowly through the woods, and I can still do gentle exercises that are right for me.. and most importantly, they don't make me any less of a person. I like to think that for every thing that we struggle with whether mentally or physically, we have something else about us that makes up for those struggles that no one else has. Like an strong artistic sense, or being a good listener and friend, or being a master of puzzles.. hehe. And so, I don't mind having to give some things up to have skills and strengths in other areas. I think we are all very beautiful and very unique and it is my opinion that those who have been through the most and been able to still be positive about life, are the most amazing people in this world.
 

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Discussion Starter · #3 ·
Bravo to you Laura!!!! While I read your reply, I was sitting here nodding my head, smiling, and saying "YES! YES! YES!" Bravo! Very well said. This is my favorite thing you said:
quote:I've really learned that making our needs priority whether physical or emotional are not selfish.. they are necessary for us to function
This is beautiful, and such a fundamental truth for us. I couldn't have expressed it better myself, but it feels like you must have been inside my head! LOLJust like an oyster. Each time a grain of sand gets in, it creates something beautiful. You're right, for each thing we have to sacrifice, something beautiful is gained. What a beautiful idea!
 

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Discussion Starter · #4 ·
Just wanted to bump up this discussion, as I've noticed some new names around lately!
 
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