Having a chronic illness, how do you cope each day?

hi and welcome. firstly i offer many healing thoughts to you, yes, the grieving, we understand this. the pain, yes, it is all about management; bitter pill to swallow, however our bodies eventually break down. (in some form or another) i live with my illnesses and pain within the constructs of the here and now. i live with these within my limitations. sadly when our body goes awry we do as well. for me it is about perception; yes we are sad of the illnesses, pain and limitations, but in another way we can look at our needs, careers, etc in a different light. i am sorry for what is happening; however the name may not be important, but it does give it undue recognition. for me, i prioritize. i practice mindfulness, i push when i can, rest when i need. my health is the most important aspect of me. i have been through the ringer, health wise so to speak. (and like us all-still going) outlets and coping skills are crucial in my book. support is key. support groups are good. and you have hw. people here have compassion, intellect and guidance to offer you. many healing thoughts.

I remember shopping for a sympathy card once and came across on that had this on the front...

GODISNOWHERE

When I opened the card, it said that "How I see things depends on how I look at things. The statement can be read 'God is nowhere' OR 'God is now here'.

I bought that greeting card, but kept it for myself. It has helped me tremendously and continues to do so.

Welcome Kal to the CP forum and you have been given some excellent advice here. I'm always saddened to see someone so young having a chronic condition that has robbed them of even one day of their lives.

Keep in mind that your endo/pain are not you, they don't define you, your pain is only as big as you allow it to be, it can only take from you what you let it. It is a matter of you taking control!

You have to set your mind to those facts and regain control over your life, join the land of the living and not get stuck on a diagnosis but rather a plan to take back your life, give the pain no fuel to grow, put it in it's place, define it not vice versa.

Your thinking how and that's where forums such as these where folks who have gathered come in handy. We gather here drawing strength through sharing, hearing others share their battle tips, and comfort in understanding. This is the one place pain is not allowed, doesn't rule, now you have a name and get a plan, learn all you can, make yourself familiar with all the procedures and treatment, find the best Dr's for your team and yes a team you will need with multiple issues. Put the team together. With them find a plan that works best for you, go over your treatment options and tests and procedures but most importantly find things that work on the pain by listening to what works for others, be willing to try about anything to erase any degree of pain because as long as it's strong its in control.

We redefine what we have come to think of as normal, we learn to do things differently and different is Ok. Find new friends who have common abilities, all those things you have not done do just do them within the confines of your ability.

We can talk more, it's a huge amount of information but always remember thatone tthing, pain only has as much control as you give it. Like Susie advise find a Women's center preferably in a teaching hospital and get into the Neurology appointment as well and start looking for answers for those issues, putting a name on them are half the battle.

Don't sweat the small details but rather keep your mind busy with the big goal, taking back your life! Distraction therapy is awesome and what better way to distract yourself then to focus on what you can do and change and not on the losses.

Welcome to the board. Unfortunately this is a group no one wants to join, but it's a great blessing that it's here.

Your question is one that we all must address each and every day. It doesn't matter if a person was diagnosed a decade ago, or yesterday. We all have our tricks-somedays they work, somedays they don't.

I was diagnosed as a young kid. Is some ways you would think it would be a benefit-I've always had to cope, but honestly, somedays it is really, really, super, crazy, hard.

Like Vickie said, Endo does not define you. It is just a small piece of a puzzle that will now fit into your everyday life.

First, even though there is no real cure, knowing that you are fighting a disease might help. Find a Dr you can trust is paramount. Honestly, my med team, is one of my most important relationships. Knowing that we are all fighting together, allows me to feel some sort of control. Most of us on the board have a pain management doc. If you feel this will be a Dr that you will need, it's better to start looking for one now. Usually you will need a referral from you primary Dr, or the Dr that is treating you now. It can take MONTHS to schedule a new patient appointment, so you might want to jump on that. Again, for me, knowing that I'm doing something proactive, helps.

As for the friend issue, I am lucky that I was diagnosed so young. My friends have never known me any differently. But, I still do have to work to maintain good relationships. If we have plans, I try my hardest ( like we all do) not to back out. Since my friends do know me so well, most of our plans are pretty low-key. One of my best friends picks me up for a movie once a month. There have been times where I just feel to tired and hurt to want to see one, but once I'm picked up and I'm there, I really appreciate the effort-and usually have a good time. Game nights, paint nites, movies, and just hanging out does a lot to keep my spirits up. I'm in a book group, and many times when I've been inpatient, the book group will come to me. I might not have as many friends as I would if I was healthy, but they are great friends.

Another thing that has helped is to have activities and things to do on my calendar. Even though I'm inpatient every few months, I still want things to look forward to. When inpatient, I often write on the whiteboard the date of the next thing on my calendar. It gives me something to shoot for, and the Drs know that I'm fighting hard to get free :) Once I was discharged in the morning, and at a hockey game 3hrs away that night. Unfortunately, most of us know that pain is something in our future, but it helps me to know I can attempt to control something.

I wish I could give you some magic answer. Unfortunately, you will have to find your own way, what works for you. Just remember, you are stronger than your disease. It may not seem so now, especially since you are newly diagnosed. Allow yourself some time to come to terms with what is occurring. It's perfectly normal to retreat and be scared. But, the sooner you can establish some sort of control, the better. Just remember, it's totally normal to feel like you do. Each of us on the board have days where we feel that nothing is going our way. That's why this board is so invaluable. I try to be as upbeat and positive as possible, but I still post on here when I'm overwhelmed, tired, sad, and angry. The members here listen, offer advice, prayers, and support. I also attempt to do the same when others post and need help.

Stick around and let us know how you are doing. Asking for help is not whining, and it's not weak.

Hi KAI,

Sorry you have reason to be here. I can relate to your story so well. I too had illnesses beginning, well, for me, from before the day I was born. I have Spina Bifida, a birth defect. It too robbed me of my childhood. I also was told that it was in my head and all that crap. For years and years. That I could get rid of the problems if I "wanted to". How angry I am sometimes, and how sad I am sometimes.

It took away any social life I had, and now at 37, I am still feeling alone. Just had another 3 surgeries (all at one time) to correct things caused by Spina Bifida, my primary diagnosis. It's caused an unbelievable number of other illnesses/problems.

I think after each major "event" in my life due to SB, I end up doing some grieving. Unlike you, I do also have depression. It certainly doesn't help. Often I don't know when the grieving will end, or if it will end (for me). It seems to come up every so often and its like I just want to do it once and get on with some form of a "real life".

When I read your post, I actually began to cry for you. I understand. I can relate. I also know from my experience, that grieving is ok, but at the same time, or when it lets up a bit, you have to take your life back from this monster. Yes, it will continue to be in your life and affect you, but please, don't let it keep you from doing the things you want to do, even if it is at a slower pace than you would like. Live your life girl!! You deserve to! I spent many years being very depressed, not knowing why. My docs now think that my depression began and is in large part due to the SB and all the medical issues it has created.

You are strong. Don't judge yourself for grieving. Your family and friends may think you are "cured" now, they don't understand. Likely they mean well and just want to believe your suffering is over. You will be ok.

If you want to "talk" more, please let me know. I will be here if you want to vent or talk or ask me any questions or just ramble on. No judgements. I just know I wish I had Healing Well at a much younger age. The people here are wonderful. Weekends and summers are a bit slow, so give people a few days or so to respond more.

It's totally normal to grieve. And to feel whatever feelings you feel. I hope you continue to come here and post. Always here for you.

Sorry this got so incredibly long. Your story really touched me and I wish I could take away your pain (or at least help you with it.)


Sunny13