What it really means to have endometriosis.

[painttheseconds]

Thank you so much for posting this. It brought tears to my eyes because it is so so true.

[JC]

YAY I'm glad you guys like it. It felt good for me for someone to put it into words. When you have to face your day and you wake up thinking, "oh I don't have the energy to do all this!" It's just so hard sometimes, especially on the really bad days.

[JC]

Tip: Handling Isolation That Comes From Chronic Illness

The title is ominous, I know. But for so many of us that suffer from chronic illnesses, it’s an all too true reality. I must preface this by saying that not all people who suffer with a chronic illness experience this. However, the subtleties of it grow as time passes and one is confronted with the reality of it, be it large or small, at some point in their lives.

It may be as small as the awareness of the decrease of invitations by friends due to our physical limitations. For some, that awareness grows to a more glaring, in your face, epiphany that friends that were always there before suddenly wish no part in your life…excuses a plenty. It’s not even relegated to just friends. Family roles play a big part of isolation experiences for the chronically ill. Those closest to us are often the ones to fall into one of two categories. Faithfully standing by no matter what or those that turn a blind-eye and deaf-ear to our honest answer to their question, “How are you?”

It’s important for the chronically ill to have a plan to handle times of feeling isolated. This is true whether you’re feeling isolated now or think it’s a possibility for your future. The realities of life are handled better if we understand the possibilities and have a plan on ways in which to deal with such times. Let’s talk about some ways to handle isolation times in your life.

•We’re blessed to live in a time of the information super highway. Social network sites make it much easier to remain in our homes, if needed, yet still be interactive on a day to day basis. Whether it be local friends and family or online acquaintances, it’s there for our using and can keep us connected to the real world. Some suggestions might be the bydls.com on facebook or the [Endo Resolved] message boards.


•Not only do we have a multitude of e-social activities to participate in, we have a vast array of research at our fingertips. We can be pro-active in our medical care simply by spending time doing a bit of our own educating.


•Can we say real life support groups? If ever there was a source of interaction for the chronically ill and isolated, it’s support groups. Some of the most wonderful people you’d ever want to meet are in a support group and can truly say, “Been there, done that!” Or, they say nothing at all but have golden ears to listen with.


•Blogging is one of my favorites. It’s like your online diary. I like to be able to express myself, and even my feelings of isolation, in words. Many blog sites can be set to private so that no one, other than those you want, can read them. Many of the aforementioned support group sites offer their own blog space just for you. You never know when someone will read your blog and be totally blown away by the knowledge that someone else is going through exactly what you are.


So, you see, isolation doesn’t have to take over. Yes, there are times where quiet reflection is needed but no longer do we have to draw back into a dark place in our minds where loneliness rules. Like the old yellow pages ad said, “Let your fingers do the walking!” Get out there via the internet and keep in touch with friends and family. Find new friends that can relate to what you’re going through and can offer hope, encouragement and support that you may not have otherwise. It’s a good choice to make and certainly a good way to handle isolation for the chronically ill.

Written by guest writer Rose Michels

www.butyoudontlooksick.com/articles/guest-writers/tip-handling-isolation-that-comes-from-chronic-illness/

[claireboe]

So hard to read (both the article and the spoon story), but so important. I shared the doctor's article on Facebook.

[alana273]

I read that article on endo, I haven't even been diagnosed yet (I'm getting the laprascopy soon) but that describes me perfectly! I am getting my period Thursday, and I'm already nauseous, dizzy, and cramps like woah. And to know they're just going to get worse makes me want to sleep thru the week. Thankfully, there are some good doctors that will help!

[JC]

Oh the "dread my period" feeling. I'm sorry! People just don't get it.

[alana273]

I know all my friends are like you have to bail again you're such a flake! But really I'm in bed crying because the pain is so bad

[alana273]

Jenaya- I saw you blogged, where do you do this, I want to start one because I wanted people to keep up with my progress after the lap... I have never even considered it, but felt that it was a good idea to reach out to all my friends so they can follow me

[KSA]

www.butyoudontlooksick.com/xmedia-press/new-video-christine-miserandino-reads-the-spoon-theory/
A nice video to help people understand how our lives work. She is a great speaker inspires me to tell my story.

[alivenkicking]

Yay, spoon theory!!! I cried like a baby when I first read it. The whole site is good, the name says it all: but you dont LOOK sick! so much of what's hard for me is that I *don't* look sick to most people, and I never realized what a common experience that is with people w lupus, fibromyalgia, etc. Thanks for reminding me of it!