Tell people exacely what you need or want from them or wish for from them. They probably still won't do it... but then you can be RIGHTEOUSLY angry at them because they know exactly what they should do and aren't doing it. This puts you completely in the right and them in the wrong! :-) Ok, that's a bit of a joke, but it does help to be specific about what you want.

I have tried to look at it as a 'stuff happens". It sure isnt fun. But being upset all the time doesnt help. Good luck.
Mary Ann

I think pilates is a good idea. I also discovered Zoloft and therapy helped me find my zen too.

It's okay to angry, considering all you've been through. Forgive yourself for those totally normal feelings otherwise you'll just be "angry" at yourself for being angry.

meditation has helped me with the anger and frustration and journalling. Do you have a hobby or something you do just for you? Reading or painting or anything like that. You can't fix stupid when it comes to other people.

The anger can eat at you unless you find a release for it or a way to accept it. I hope you find some peace.

Beth

My vote for best line on the MCTD support group for November:

"You can't fix stupid when it comes to other people. " Go, Beth!

All really good ideas.... I would only add this: try to find a mix of high and low energy activities. For example, reading, journaling, and consulting with colleagues on the phone work much better for me if I can also mix in some hiking, playing music, short body boarding sets, etc. It doesn't have to be way physically active... it could be shooting pool, playing darts, ping pong, something like that.

It's easier to get wrapped up in anger if you're doing all high energy or all low energy activities. For example, if you're browsing on the internet a lot, talking to friends a lot, and writing in your journal, sometimes suddenly things stop working. You get frustrated bidding for something on eBay, your friends start pissing you off, etc. Or, if you're always moving a million miles an hour, driving fast, playing loud music, doing cardio exercise (even if it's less than healthy people can do), you can wind up tense and irritable.

Varying your environment and routine is very important, too. In the bad old days when I worked on independent documentary films-- God, I hate documentaries, I would always get roped into doing them, never get paid, they always took forever and never got finished, even worse than independent features-- one thing we discovered is that you need a mix of wide shots and tight shots, interiors and exteriors. One sure way to send your blood pressure through the ceiling is spending too much time indoors. I know it's tough for us in the winter with this illness, but even short periods outdoors in the warmth of the day can help.

On the mental side, one useful model is thinking of what's beneath your anger. Anger is an important emotion, it lets us know something's wrong... and usually, there is a feeling of vulnerability beneath it that we don't want to face. Like, we feel lonely, or frightened... so the purpose of the anger is to signal, for example, that we need to recognize our fear. Once you've identified what the feeling is beneath the anger, you make a decision what to do about it, and how to take care of yourself.

Example: "My insurance company's website fills me with rage, but that's because I feel manipulated, and like I'm too old to keep up. I can see that 30% of that has to do with issues that have nothing to do with the website... feeling sick, and like I can't keep up with my friends. 70% of the feeling, however, is because this website is poorly designed. So, rather than grabbing a tire iron and reducing my laptop to a pile of twisted metal and plastic, I'm going to take a different kind of action-- go outside, leave a voicemail requesting that my agent speak with me on the phone, put a timer by the computer and take a break every hour" or something like that.

So anger is useful. If you can make it work for you, let it serve its purpose, you can sometimes disengage from it more easily.

You got some terrific responses. I don't have much to add as far as specifics, but just to keep being real and keep on sharing. It's so important to acknowledge the anger, even to yourself, because otherwise it will fuel depression big time! Hang in there and keep on sharing!!!

My Grandfather died before i was diagnosed, but he was the most amazing man and i am so very lucky to have had him in my life. He used to always say "never expect anything and you will never be disappointed". That is so true, and includes our expectations of ourselves. You need to take time to acknowledge that you have limitations and you are doing the very best that you can. Ive also learned not to expect understanding, caring, concern from people - when i actually get it its a nice surprise. Of course i am working on this every day and its hard to go it alone. Even when you have the sport of your family, friends, doctor, etc., they will truly never understand.
That said, it is also extremely important to be grateful for what you DO have instead of looking at the negatives. Something else that i work on daily. I have seen people die of cancer that are my age and way too young to die. My sister was recently diagnosed with thryoid cancer at 30!! thankfully that is a relatively easy one to cure and she is now in remission, but it still made us think about Our mortality. We may have this horrible and unpredictable disease, but we arent going to die (albeit there is always that small chance of complications,etc.). I hope that this is all i get handed in life to deal with, this is more than enough and i dont ever want cancer!
I watched my Grandpa go through two amputation surgeries and a wound infection, which eventually led down the path to his death. But he never lost his amazing smile and ability to be greatful for everything he had been given - even when he was minus 1 leg and toting an iv antibiotic pack around in his wheelchair for his CDIF infection. I was always amazed by his strength and uplifting attitude. Now that he is gone i try to live my life the way that he lived his - which, i want you to know is incredibly hard to do! What helps me is to focus on being thankful for what you do have, focus on the positives, dont expect anything from anyone (including your doctor and yourself). ive found that taking one day at a time helps and trying to be less critical of myself. Im sure you are an amazing person that has so much to offer others - hang in there and be strong!
Shannon

I love all these suggestions. I struggle with this at times too so these ideas are very helpful.

Thank you to you all! What a great group!

Gabrielle

Hey I feel the same thing and I try to keep my mind off things and do what i love. I usually dance like no ones watching in a crazy manner lol, i write and i go to my friends and make them crazy but im so lucky i have friends how bare me in this condition and become crazy with me. :) So dont worry whenever you feel down or angry just throw it on us we will go crazy together :D
Cheers
Have a nice day

I remember one time my sister made a comment to me about being lazy because I asked my niece's husband to put my new license plates on my car. I had to remind her that if I squatted down, getting back up was almost beyond my ability. And she said something that stuck with me - she told me that it was easy to forget I was sick because IT DIDN"T SHOW. So sometimes you just have to remind people that there's an issue. Not that you're going to milk it, but if they could please keep it in mind. Maybe people in your life will try a little harder for you then?

Good advice on reminding people. For years, my husband and I both thought I was lazy. He has done a great job at recognizing being sick over being lazy. I am not quite sure what to do with my supervisors. They are both pretty harsh in their management styles (I am looking for a new job, because I think they impact my stress and health), and they dont seem to care about or understand my illness. However, I am not sure that is their job. I work through discomfort or pain on a regular basis and have returned to work from the hospital after uncomfortable and painful tests, and they never say anything.

Again, I am not sure they are supposed to. I would love a Thanks for coming into work after spending 4 hours in the hospital. I appreciate your dedication but it is never going to happen.


Thannks,

Gabrielle

IrishRush brings up a good point. A lot of us look so healthy on the outside, even the people closest to us often forget. I don't like feeling like I'm playing the invalid, but I just flat out remind people, especially my closest friends as they seem to forget the most.