Helping spouses understand IC flares. Need ideas!

[icnmgrjill]

SO - Significant Other

Okay folks.... here's the scoop. We're just finishing up this special issue on Managing IC flares and I've just had a brainstorm. I thought we should include a letter from an IC patient to their wife/husband that would reaffirm their love but also explain IC and give them solid tips and how to help AND permission to go do other things!

If you could say anything to the partner of a newly diagnosed patients that would explain how they should treat you during a flare... what would you say??

I thnk it should reaffirm love AND give lots of good suggestions. Give it a try.. would you??

Jill :)

[Dixiefireball]

Talk to your husband/wife about your feelings. take them to the doctor visit with you. let them see the doctor with you. so they know what the doctor has to say about your dx, and treatments let them hear and know how to take care of you with your medicine the doctor is giving you. let your partner become a part of your heath care you would be amazed how much it will help if you let them become a part of your treatment. My husband felt left out in the cold because he didn't know how serious things could be for me. until my doctor had a talk with him. i let the doctor explain to him how i can and should take my medicine. that way when i'm sick Jeff (dh) can take care of me without me telling him how. exp after my surgeries its important for him to know how to take care of me and give me my medicine. My husband even knows how to give me my heparin treatments mix them the hole nine yards. if i'm unable to do them my self.
its also important to talk to your partner about how you feel and not try to hide it. They can help you more if you let them know how.

Just my point of view and how things worked out for me.

[K9wife]

What a great idea!!!! The support and understanding of our spouse/significant other is SO important!!! Mine would go something like this:
Hon- you have been the love of my life since I was 12 years old. When I married you at 18, and you promised, "for better or worse, in sickness and in health," I'm sure you never dreamed that IC would be so much a part of our lives, and yet, as you promised on that day 28 years ago, you have patiently listened as I bitterly complained, even though you admit you don't begin to understand what I am experiencing. You graciously stop at every rest area as we travel, and have learned to head FIRST for the bathroom as we shop together. For those things, and many more, I love you dearly and with all my heart and soul, and I hope and pray every day that you won't tire of the demands this beast we call IC puts on our relationship. I need for you to know that sometimes when I snap at you, it is usually not for any fault of yours but out of frustration and constant pain I am experiencing. I want for you to understand that sometimes I need to seek out others who truly understand what I am feeling, but that in no way lessens my love for you. I look to our future with uncertainty as to what each day, week, and month will bring, but still have cautious optimism that someday there will be a cure for IC, and we can take all of the coping strategies we have learned along the way and put them to a use that we haven't even yet thought of. Your patience and understanding during times we lack physical intimacy means more to me than you can possibly know, and during those times- believe it or not- I find myself being even more attracted to you and on a deeper level.
I can't imagine traveling this rocky course with anyone else than you, right by my side, patiently and lovingly holding my hand until our last breaths. Please don't ever stop being the man that you are, and my strength through it all. I'll love you forever-

[Babs RN]

Dear Chris,
I know the last eleven years have been some of the best in our lives, and that we have had trials along with immense joy. We struggled to have a child, stuck in there together through all the losses, and then were blessed with God's most special gift, our Lindsey. Life went on with us doing the new parent thing, the work thing, and a move across country so you could continue your selfless devotion to the Army. Got thrown some residual curve balls as a result of Lindsey's entrance to this big beautiful world, and then grieved the loss of my ability to continue to bear more children. I know the IC diagnosis has been hard on you. Coming to appointments and taking the time to understand the disease means so much to me. When you are home and offer to take Lindsey somewhere to lunch so I can nap is a blessing. I know one of the hardest things for you is some of the medications I am on seem like a crutch or weakness to you...to me they allow me to function. You are a very gifted, athletic, and extremely healthy man. When you get that urge to get on me because you think I am attention seeking, realize that I share my pain with those who are closest to me. You are my best friend, my confidant, and my lover. I know IC has affected every inch of those facets of our relationship. I know together we can continue to take on the world.

Love,
Barb

[icnmgrjill]

Love it! Love it! Love it! Folks... please keep sending in a few more letters??? I want to print several of them in this special report.

Jill :)

[DebbieD]

Hello Jill. My Husband has ben My Strength my Shield. My keep her going guy. Larry has been there through all my Surgeries and saying "Honey I love You we will get over this Hump"

I just thank God I have hime to Lean on cause if I did not I just do not know wjat I would do.

He is my Lifesaver. Yes we have a Our days also. But he does not Like to see me hurt;

I love hime to death.


DebbieD

[ICNDonna]

When I am in pain, I need to rest --- and you encourage me to do so.
If we go anywhere in the car, when you see a rest stop sign, you always ask.
If I don't feel like going, but encourage you to go anyhow, you do --- and you understand.
You don't allow me to lift because you know it hurts.
If I don't feel like cooking, a hot dog is always okay with you.
You go with me to my doctor's office and wait patiently for me.
When you're working in your wood shop outside, you come in to check on me.
I think most important is that your face lights up any time you see me.

(There's lots more, but these are what immediately come to mind.)

Donna

[Dixiefireball]

Donna that sounds like my husband Jeff he always tells me not to lift that asking me are you okay. asking me do i need to use the restroom am i feeling okay. taking jeff with me to the doctor with me really made a diff. he has always been with me threw all my surgeries holding my hand helping me with my medicine etc. if i'm outside doing yardwork he always asking me are you to hot to cold do you need a break.

My doctor talking to him made all the diff. in the world. and most important we talk about how we both feel.

[Debgail]

Dear Lou,
Words cannot express the deep gratitude that I have for you. Your example to me and all those who know us, is exceptional. The true meaning of Love is ...caring for and servicing others freely with a willing heart. You do all of these for me. My having ic is not looked upon by you as imposition in your life or as If I were less than the woman you married. You love me.You feel bad that I hurt. You feel bad that I have this disease.All of these things are about me....that's the kind of person you are....you think of me first...you wish you could take ic away..for me ...not for you. Even when I complain, dont cook dinner,do the wash....you will use a towel twice, get mC Donald's and bring me home a sundae....and smile all the while trying to cheer me up.This disease does not grate on you....you just "great" on me because I have this. I wish everyone had a partner or family member that was as selfless and compassionate as you are. I Love you, I love you, Deb

[ConnieSue]

Dear B,
I know you are very confused now, and want so much to wrapped those big arms around me and take me back home so you can look after me. I understand all your reasons, but at this time, I cannot let you do that. The only way I can explain this is to keep it real about how your health issues were what filled our days and nights for 10 years, the constant Dr. visits, the surgeries, the endless research and horrible nights of unending pain you experienced.

I know how much you appreciate that I was there for you, kept you strong, kept us from losing our business, home and future.

When I saw the joy and hope of your recovering from your illnesses, I felt a great burden lift, but I had no idea that my turn down that road was about to kick into full gear. When you felt strong, I became weak, and totally confused at my loss of health and emotional welbeing.

As I was trying to find the anwers, you wanted to leap back into a full and hectic life and it hurt and confused you that I couldn't join you. So instead of you being able to stand with me and help me, you grew resentful, angry and disappointed.
You began to find someone else who would want to share in all those things that you had dreamed of as you laid so ill for so long.
I had become only a shell of the woman who had married you.
I understood as your needs now went unmet, I had subdued mine. You felt you had earned the right to happiness. I had counted on us both sharing that happiness.

As my health spiralled down and no answers could be found, we pressed on with the business of home, travel and business. You began relationships on-line and as I began to find those emails and read of your pain and heartache, it took the last possible hope I had of you being able to be there for me. I had tried to explain the troubles, went to the Drs you wanted me to see, but no answers except the standard, anxiety, chronic fatigue and menopause. Instead of helping me imbrace these and find peace, it was like a wedge between us. I am so sorry I disappointed you and wasn't able to maintain my own health, but getting you well had seemed to be our only goal.

Since we have seperated, and I have begun to express my hurt and pain about your actions, you have moved swiftly to try and assure me you are ready now to be all the things you should have been for me, cook and care for me when I need it, hold me when I am in pain, and try to help me find answers for this illness that has crept into our dreams and broken me down to the person I have now become.

You have to understand that I am not ready to trust you with my recovery and journey through this part of my life. NOr am I certain I can trust you with helping me as I deal with all the emotional pain that the past two years have brought. I have forgiven you for not being there at the beginning, and for seeking someone else to join you in your dreams.

I am sorry that failed for you. But I cannot heal or grow stronger and more confident in managing this disease if I chose a degree of love that I feel is forced or from guilt. I hope you will understand that is why I must find my own friends, and support team in this illness. I don't want to be well so you can be relieved of guilt or obligation, I want to learn to manage this illness and be healed in spirit that I can give back the good that has been given to me over the years by so many.

I want to be well to enjoy my grandchildren and learn to travel and enjoy the things I once loved, gardening, volunteering at agencies that need help, being able to teach at Church again, and dancing....:) I know it's hard for you to understand this, but it's now something I feel I can only trust wholly to God, to my Dr.s and to my own inner strength to understand and live with this illness.

[windwalker]

To the spouce of a newly diagnosed ic patient,
This is a difficult disease and in a flare, your spouse may go through a TON of emotions. She (he) may want you right there, or wayyyy farrrr away, she may sleep a lot, whatever she's going through, I would only suggest your support and asking her if theres anything you can do to help her. Make sure theres a heating pad available (sometimes it makes a crazy bladder feel better) and whatever things you think will help her to relax. Other than that, just love her and be there for her when things get rough.

[trytosmile]

Ok, I've read the stories, now I'm crying !!!!!!!!! Your a lucky bunch of ladies, only wish I could share a story like that.

[KYDoulaCrystal]

Dear Tim.
I am going to try to type this with out crying.
I adore you my precious husband. You have done so much for me over the last two years, I must honestly swear to you I could not have made it with out you.
2003 was a give and take year, I took care of you with your back when you first got hurt, just as soon as I got you nursed to where you could function I went down with my bladder.
You stood by my side, even as people told me nothing was wrong with me, no infection, nothing. To rest, that having 3 kids was stressful at such a young age, it was that, and nothing more.
You never said you thought I was crazy even when I Cried on the way home from the Dr 's that said that I was.
You drove me to the hospitial each and every time. You sat by my side through many admissions, in those hard chairs that hurt your back.
You were my rock. You took care of 2 and then THREE toddlers/ babies all by your self when I was in the hospitial. Many, Many, Many, times.
You were firm when I needed some one to be firm with me, but you were oh so loving and giving and generous when I needed that more than anything.
I am glad that we are about to celebrate our 6th anniversary. On this entire day I am going to focus on nothing but the vow through sickness and health. Because that has been the biggest toughest one for us.
And you have fulfilled it. With bells on. Never once said Crystal I can't take it any more (when I was sick anyway, LOL)
When I was in a flare you got my levibid, you drove 100 miles an hour to get me to a bathroom on the highway, you got up, hurting bad your self, to get the kids out of the bathroom.
All these little silly things. They mean everything to me Tim. Everything. I know they were hard for you, but you never let one, you just did it. To show me that you loved me.
You went to ALL of those urologist with me, even though I know you did not want to.
For 7 days you went through hell while I was in the hospitial out of my mind on medicine when they burst my bladder. I never knew that you were hurting, or frustrated, because you always had a smile on your face, happy to take care of me.
Ok, it is tough holding the tears back now.
Tim, Oh how I adore you. You are my rock. And my guiding light. You pray for me when I am shaking and crying and in agony. You tell me it is going to be ok.
You hold my hand, when that is what I need most in the world.
My only hope is that you do know you are appreciated. And that you are, with out a doubt, the best man on the face of this earth.
2005 started off really bad. But The Lord won. We are still together. We have started over in a new state, and I am thinking that this might end up being the best year yet, since the IC started.
Thank you, Thank you, Thank you.
I am so deeply blessed by you and even more so in love with you,
Crystal Jade Skidmore :love:

[trytosmile]

That was the most wonderful thing I have read on this website. You are BOTH so lucky to have each other.

I doubt there will be a dry eye in the house after anyone reads this post.

[KYDoulaCrystal]

tim just came to bring me some pyridium.
I read that letter to him. Cried.
Then I got your reply. Read that to him.
And said , we need to look at it from other peoples perspective.
Because we have had one hell of a start to 2005. Things got bad.
Thank you for your perspective (sp) I appreciate your words. It is so nice to have support.
I spent the past few days in literal panic attacks. Worried about medicine and drs and I started my period. we all know how that goes.
So i got online, came back to the IC network. Havent been here in a year.
Jill, Thank you so much for creating this, you have NO IDEA HOW WONDERFUL and how much of a support system this is.
How did I go through the last year with out this place?
LOVe,
Crystal
Who ADORES Tim.

[KYDoulaCrystal]

Connie,
Print that letter off. And mail it to or give it to your husband for him to read alone.
And then tell him that he must wait atleast 2 hours before he calls you or talks to you about it.
My husband left me first of this year, he was on ALOT of medicine, it screwed with his mind, he has a bad back, and just came out of vocational rehab, so things were BAD. BAD BAD off that crazy med he is in love with me and greatful for me and takes care of me, but I know how bad it hurt those three days of pure hell.
To be told I wasnt loved, all that, I know it might be diffrent from your situation. But please give him that letter I Think it might be the first step to healing.

[Michelle in KC]

Dear Donald,

I can't thank you enough for the years we've had together, for the trials we've had, and the happy times we've had. Thank you for being my beacon through this forest of pain and illness.

I know you are always willing to help. Even when I am not willing to ask for it, you are there for me and the kids. When you do laundry, cook, clean, or take over care of the kids, it truly means a lot to me. YOU help me by being there for me.

I love you for your stubbornness, for your kindness, and for your ability to understand my pain. When you ask me if there is anything you can do for me, I want to jump for joy, but of course I can’t because it would make me hurt that much more.

You are a great husband, father, provider, and a strong Christian man. You are my strength. When you are tired and worn out and sore, I want to take care of you like you take care of me. Sometimes I can, and I enjoy doing so.

My IC is a cross for me to carry. It is daily pain of indescribable amounts. It is that angry porcupine inside the balloon of my bladder, and when you deflate that balloon, that porcupine is furious and jumps all around and hurts me more.

The constant need to pee has affected every aspect of my life and yours. We can’t go anywhere without my knowing the bathroom situation, or stopping many times on the way places. I get up so many times in a night that I disturb your sleep as well as my own, and a few cats. I see the sleepless dark rings under your eyes and feel very badly for causing them.

The constant need for pills of various kinds (I am now up to 7+ pills a day) is a strain on us, financially, and emotionally. You joke about your wife, “the walking pharmacy” but if I were caught out without my pills and in pain, what would I do? I’d be on the ground in pain and making everyone miserable with me. I don’t want that.

I am supposed to tell you ways you can help me. But you already DO all those things. You get my water for me at the store. You bring me my heating pad if I need it. You unload the car for me if there are heavy things or a lot of things. You drive me places when I can’t drive due to pain or medicines. You cook when I can’t. You clean when I can’t. You do laundry often. You always vacuum the house. You cut the grass. You clear the fence line; build horse pens and dog yards. You chop the wood and carry it in. You are the muscle in the house.

I want you to know that having a disabled wife is not a prison sentence. You are free to go fishing or hunting or camping when you want to. I know I can’t go, but I do want you to have a life, outside of my IC. I want you to be happy.

Most of all, I want you to know how much I love you and appreciate everything you do for me.

Love Always,
Michelle

[theoutlaw77]

Tim- I have struggled for a long time to find out what is wrong with me. The process was terrible for both of us. "Where did my wife go?" You would ask. "What happened to the woman I married?" You wanted the happy, energetic, fun person who you married to come back. But, it is hard to to be those things when you don't ever feel good. It is hard to be "your old self" when you don't feel like your old self. Not to mention how draining it is (both physically and emotionally) to have wondered for so long- what is wrong with me? Am I crazy?

Then, I finally got my diagnosis. You already see how much just that has done to improve my condition (the emotional part anyway.) Just knowing what is wrong has lifted a huge burden from my chest. Now, you say that soon I am going to be a spokes person for IC since I do so much research. But, you understand how important it is for me to know all about the disease that I can. And, while you do not actively research yourself, you listen with interest all that I show and tell you. It means so much to me that you have agreed to wear the IC Awareness bracelet to show your support.

I am finally starting to feel somewhat like myself again- or as close to my "old self" as I am going to get. I will never be the same- as, I am not the same. This disease is a part of me, and will always be a part of me now. But, I am learning to deal with it. I am glad that I am not crazy. I am glad that I have a treatment plan. And, I am glad that I have you! Thank you for being there for me. Love, Jonee