My husband took a day off from work before Christmas and went back to that gift shop in Black Bear N.C.,negotiated a lessor price and bought that mirror for me. I had no idea he took off work and drove 2 1/2 hours to this store and then back. I had no idea it was under the tree. I had no idea until I unwrapped it on Christmas day.(I wonder what else he does that I have no idea of) I was very surprised. He made me feel so special with that gift.
It was such a thoughtful gift. It exemplifies what kind of person he is to me and to others. My husband is always thinking of and doing things to help other people. He helps our neighbors with their lawn care. He helps my mother and his mother with lawn care and other things. He will give a ride to a total stranger (I don't recommend this one!). He helps those that need help. To top if off , most of the time he wants to remain anonymous. He doesn't even want credit for all his good deeds.
My husband has been a great source of support for me all through our 31 years together. In the beginning when I was so sick with Interstitial Cystitis (IC), I couldn't believe that a man whose "love language" is touch would be stuck with a woman who could barely stand to be touched at all. If you haven't read "The Five Love Languages" by Gary Chapman, I urge you to do so. You don't have to be married for this book to help teach you ways to deal with other people.
I felt guilty for not being able to make love to my husband because of all the problems I had. For months, I wouldn't even let a doctor touch me for the most part. They would say, "I'm not going to do a physical exam on you today" and I would say "that's right you are not!!" I felt like I was responsible for punishing my husband. I felt like I was less of a woman and even offered my husband an "out" if he wanted it. I didn't want him to leave and I would have been devastated if he had left, but I wanted him to be happy. I thought he deserved to be happy and I didn't think I could make him happy any more. It was one of the countless battles that was going on in my mind when I was first diagnosed.
I look back on those thoughts now and I am thankful that my husband supports me no matter what is going on in my life. In many ways, IC has brought us closer together as a couple and I really don't want that to end. If still having pain in my life keeps me closer to my husband then bring on the pain. That is not to say that I am going to sit here and be in pain all the time and not fight back. Oh no, far from that. I am trying and researching new things everyday that will help me. Things that will make me a better person and a better wife.
If you don't have the support of the loved ones in your life and they don't seem to understand what you are going through, I suggest that you write them a letter. It doesn't have to be long or fancy. It just needs to come from your heart. Most people do not understand IC. Before you were diagnosed had you ever even heard of IC? Not me!! In your letter, explain your pain or your biggest struggle in as much detail as you can. My biggest symptoms were pain and lack of energy. I tried to give my loved ones a glimpse into my daily struggles. I tried to convey how much I suffered even if I did the easiest of house chores. I tried to help them understand what a struggle it was to just take a bath and wash my hair daily. I hope they understood that even the smallest of tasks drained me of my daily energy. I had to pace myself more and I had to give up some things that were precious to me.
You also may want to ask them to go with you to your medical appointments. In the beginning I asked my husband to go to my doctor appointments with me. Mainly to help me remember what the doctor said because of the medicated fog that I was is, but also for moral support. If the doctor was suggesting a procedure that I had read about, but my husband was not familiar with, I asked the doctor to explain it to him. Sometimes it helps if your loved one hears from a doctor just what all you are going through. He still goes today, if I need him to,when I go out of town. We make it more of a "day trip" than anything. We both love to travel and then we will eat together after my appointment.
I also bought a book entitled "Please Understand: The Interstitial Cystitis Guide For Partners" I read this book first and then asked my husband to read it. This book, written by couples familiar with the challenges of IC, is an invaluable resource for individuals and couples alike. I ordered it from Amazon and it was not very expensive.
I also talk about everyone on my facebook support page and I call them by name or state. They are real people. They have real problems. They are a priceless resource for me and my daily struggles.
People with IC have real pains,depression and moodiness. The stress alone of not being able to do the things you need to do or things you want to is such a burden to us. We all need a support system. We need to reach out to others, educate others and ask for a hand when we need it.
It is up to us to educate others about what we are going through. It is up to us to ask for help when we need it. It is not always easy, but necessary for now.
If you are having trouble trying to make your loved ones understand what you are going through ask them to read my blog or maybe a magazine article or a webpage describing Interstitial Cystitis. IC is not easy for us as the patient, but it is not easy for our loved ones either. Let's try to remember that as we go through this new year. Let's do things for our loved ones that we know they will appreciate. Let us all give "The Gift of Love"
Let me know your creative ideas of reaching out to your loved ones by leaving your comments below."Love is patient and kind; love does not envy or boast; it is not arrogant or rude. It does not insist on its own way; it is not irritable or resentful; it does not rejoice at wrongdoing, but rejoices with the truth. Love bears all things, believes all things, hopes all things, endures all things. Love never ends. As for prophecies, they will pass away; as for tongues, they will cease; as for knowledge, it will pass away." 1 Corinthians 13:4-8
Please see below for a peak at the mirror.
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