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icnmgrjill
11-23-2006, 08:50 AM
So, here I am sitting on Thanksgiving day morning after having a bit of a cry. My brother, Jack, isn't feeling well today and isn't coming over for the holiday and, well damn, I miss him already. This is bringing something up for me that I need to share with you.

I have a confession to make. When I don't feel good.. and god knows that's happened alot since my IC began... my self esteem plummets. It's so weird. I develop feelings as if I don't belong or that my life has little value to others. Just happened again two days ago. The power went out in the ICN office and then flashed back on. When it did, I developed my first EVER "ocular migraine". Talk about creepy. I had a flashing light in my eyes (both eyes) that took about 20 minutes to move out of my field of vision. Of course, my Dad had talked about his for years so I knew what it was... but my thought was "God, not something else with me." Send in the pity party... I went home... closed the drapes.... watched movies all day while dealing with nausea and eye pain ... and it was like the life just went out of me for that brief period of time. I'm better now... been to the doctor.... and totally get it.

But, today when my brother said that he didn't feel good... and wasn't coming over... it reminded me of all the holidays when I didn't feel good either... agonizing over if I should go to my sisters house for dinner ... make the painful drive... have to explain why I wasn't feeling good... face the family... and so on and so on. I hope you know what I mean.

Yes, there are times when IC is rough and, absolutely, you should stay home. Hey, if it hurts badly, it's not the time to push yourself. It's completely OKAY to say "I'm not feeling well" and encourage everyone else to go have fun. You can stay home, watch a good ole movie, cuddle with the pets, have a bit of a cry (which we all do) and then be confident that you made the right decision. I know that if my bladder is hurting over a certain leve, i definitely stay home... I've just learned that lesson that it's not good to try to travel with a bladder that's killing me.

But, if you're IC is marginal and you think you could go... I say "Go." Be with your family. You DESERVE to enjoy the holiday just as much as anyone else in the family and YOU WILL BE MISSSED if you don't go. Don't ever doubt that. IC doesn't change your place in your family.... and that's something that I have to tell myself (and my brother) every now and then... like I am this morning.

Here's a few more emotional survival tips that I try to live by during the holiday season:

1. Don't blame yourself if you're not feeling well. It's okay. It happens there will be other days.

2. Don't feel as if you're not an important part of your family. You are. There is no one else who can fill your shoes. IC or any illness can't change that.

3. It's okay to take time for yourself if you need to. No apologies required. But, it's important to come back to the fold afterwards and stay in touch.

4. Ask for help if you need it during the holidays. We all do on occasion. Noone expects you to be perfect.

5. Forgive anyone, today, who over the dining room table ... makes an insensitive comment or remark about you or your IC. They can't possibly understand what you are going through.

6. Most of all, reward yourself with the laughter and love of others. You deserve to be loved and to be cherished... as an individual... as a family member... as a friend.... as a spouse.... as a child... in every way possible.

I give Thanks to each and every one of you who inspire me to never give up. Writing this post really brought up some deep feelings in me... that I think I just needed to share. I hope it helped anyone out there agonizing over todays events.

Jill :)

Dixiefireball
11-23-2006, 01:28 PM
Thanks Jill. Those are true word of wisdom we all need to remember!!

Rhonda

dancemomof2
11-23-2006, 02:27 PM
Excellent post Jill!!!!!!!!!!!
I sure have alot of those days and have to say it's not that bad get up and go.

Katrina
11-23-2006, 02:34 PM
Great post :)Thanks you Jill...that one is definatly worth saving!! :)

Babs RN
11-24-2006, 04:46 AM
Beautiful post Jill. Hit the nail right on the head.

Hugs,
Barb:smile tee

Trishann
11-24-2006, 05:44 AM
Jill, I'm so sorry your Thanksgiving Day did not turn out to be the way you planned, and that you weren't feeling well. I hope somehow your brother Jack and you can get together another day and enjoy each other. I know sometimes that might not be possible but hoping it can happen. I hope you continue to feel better.

Yes, it is so hard to say no. And yes the self esteem plummets. I'm just happy to know that somehow we find the strength to get back up and go forward. Then when the good days come, we are glad we fought back. We have so much to give thanks too.

Sending hugs, Trishann

ICLori
11-24-2006, 11:02 AM
Sending hugs to you, Jill. Thank you for all that you do for us! This site has been a godsend to me and so many others...I really don't think I would have made it without this site. I am still here on earth today because of you, because you created and maintained this message board.

I hope that you will feel better soon, and that your loved ones will be feeling better soon, too, and you can all get together maybe another time during the holiday season.

Blessings,
Lori

marsi4
11-24-2006, 05:35 PM
Jill, thank you for sharing your wisdom and feelings. Thank you for reminding us that we are loved and valued by others regardless of our illness and that we can only do so much with our limitations due to an illness. I know how unfair it is and how sad it is to miss out on so much that life has to offer but we have to survive somehow and be thankful for the people who still care about us and for the things that we can still do. I hope that you will feel well enough to spend time with your brother and family soon. Thank you for all your hard work that you put in in keeping this board active and for your compassionate and caring heart. This board has been a blessing to ic patients and it has gotten us through the most difficult times and has kept us alive. I want to thank all the wonderful and caring people who use this board for their support , understanding, advice, and comforting words. It means so much to me and I am so greatful that we have a place to go and know we are not alone in our suffering.

Marsi4

maryla
11-25-2006, 08:46 AM
Thank you Jill for sharing your thoughts and feelings. It is extremely hard for those around us sometimes to accept us now. I'm going through that now with a very close friend, it feels like the last couple years that I've been sick, I feel like she just wants me to snap out of it. I love her and she has been a huge help in the past, however now I feel like she wants more than I have.

I, like IcLori, would be lost without these boards and I think God that you are here for us.

Thank you again Jill for ALL that you have done and all that you do!

God Bless,

Ashelliak
11-25-2006, 09:01 AM
Thank you Jill for sharing your thoughts and feelings with us. You are NOT alone. I feel these things on a daily basis and some days I just do not want to bring myself out of that bed. I feel VERY limited to what I can do because of my IC. It is a hard way to live but, if you have hope for a brighter tomorrow (and I know you do) , it will get you through. You are a sweet person and you deserve everything that all of life has to offer. Surround yourself with the love of others, it is what makes life worth living. IC can't change that. Take care Jill-if you ever want to talk-you know how to reach me. :angel: :pray: :angel:

Kara29
11-25-2006, 09:29 PM
I give thanks to Jill for working so hard every day and night to keep this site up and running! It has given us life and hope and a light for future treatments!

So Jill, I am MOST Thankful for you and your staff for what you do for us each and every single day!

Love and HUGS!


Kara

ICNDonna
11-26-2006, 02:42 AM
I hope Jack is feeling better by now.

:grouphug:
Donna

mary124
11-27-2006, 03:48 AM
Thank you Jill for writing that post! I need to remember it in the future when I don't feel well. (I keep going whether, I need to or not, people at work tell me to go home, but I don't!- next time, I think I will- if I have a Supervisor at the time--right now I don't, so its just me in my area).

hoping4acure
11-28-2006, 08:42 AM
GREAT post Jill. Per usual, you are filled with words of wisdom. I hope both you and Jack are feeling better.

I give thanks to you Jill, Donna, Traceann, Jen, and all the other wonderful people who post here along with this wonderful board...without it, I wouldn't be where I am today.

:)

MOM2LEXI
12-04-2006, 05:14 AM
Jill,
This was such an excellent post. It is hard at times to feel good about yourself especially when you are having a really bad day, but please dont forget that what you have created here is amazing and has made my life better......I unfortunately have a family who doesnt understand and will not accept it and some friends whom I adore that try to understand but also dont get it, but then there is you...who took time out of your very busy day on the phone on your own time, to talk to me, a complete stranger, a reached out from the goodness of your heart to help me and that has made all the difference in the world to me. I havent posted a lot but I am amazed at how many kind people such as yourselves have made me feel so welcome. Everyone here has something to offer....to all of you THANK YOU!!!!!!!!!!

marymove
12-05-2006, 11:45 AM
Hey Jill,
Take if from someone who is new to all this, you have made a huge difference in my live. I have been so scared and sick and talk about low self-esteem! You are an angel! Thanks for all you do and sending a prayer for a wonderful holiday season!

Braedley
12-06-2006, 05:04 AM
Thank you Jill - I'm new to the site, and it's so good to know there are others who feel this way from time to time (or sometimes more often)...

we've started telling/explaining my situation to the in laws and a couple of friends at work, and most people are extremely supportive - although they don't understand what it's like, at least they try...

hope you all have a great holiday to come - fingers crossed for better days :)