I haven't blogged in so long that I can barely believe it. The reason for my absence is that my husband has been in the hospital and he is very, very ill and I need to try to spend a lot of time there. I won't get into why exactly he is in there as this is the blog where I air MY health issues and I am not sure that he wants details of his issues shared with the world. Any prayers you can say for my husband are very much appreciated.
Any how, this situation has inspired this post. My IC comes in first a lot in my life. I don't want it to, but it does. How I am feeling can really control the pace of my day. I try not to let IC stop me from doing things all the time, but the illness may impact how quickly I can complete tasks or my mood. And unfortunately now and then there are times I do choose to sit out of an activity because of IC related pain.
When my husband was sent to the ICU, it was the first time since being diagnosed with IC that I really had to respond to a horrible, horrible crisis. No matter how sick I feel, I need to make it to the hospital to see my husband. I love him and I wouldn't want it any other way. Like most IC patients, some days I feel okay and other days I feel like absolute shit. But it doesn't matter, I do the best I can to help with my husband's situation at all times.
Fighting through the IC pain to do what I have to do is hard. There are long hours spent at the hospital. It is exhausting for anyone, but the IC pain makes it worse. I am under so much stress right now, another big IC flare trigger for me. There are so many times in the past where if I had certain symptoms I would take a nap or a break. I actually haven't had one nap since my husband got sick. I just keep on going like a broken version of the Energizer Bunny.
It's hard b/c I feel like no one around me understands how sick I am sometimes. Family and friends know my deal, but many don't truly understand invisible pain b/c they have never experienced it. I like to ask many of the nurses in the hospital if they have ever heard of Interstitial Cystitis just to see what they say. I have asked six and only one knew about it. Sad, I know.
I stay with all the other "healthy" visitors. I feel like a fraud among them. Some days I feel so fatigued and in pain I wish they could just set up a second hospital bed next to my husbands so I could be with him and tend to my own pain at the same time.
I love my husband and I want to be there for him, so I must go on. I need to be around to sign papers, make calls and be sure that he is getting the best care possible. I am not complaining, I would do ANYTHING to make my husband better. I am just venting b/c I never anticipated what it would be like to be in a situation where my IC had to come in second. I am used to having a routine and making accommodations because of IC. Right now that is not a possibility.
I am doing the best I can and I feel strong for doing so much and ignoring many of my own symptoms, but in the back of my mind I am scared. What if one day my body just gives out?? How far can I push myself to save my husband without jeopardizing my own health??
IC chicks are strong and I am no exception. I will keep doing the best I can to be there for my husband as he has been there for me many times before. IC takes the driver's seat in life many times because of the many horrible symptoms it causes, but I guess sometimes IC has to take the passenger seat.
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5 comments:
I am SO sorry that you have to deal with this. I was in a similar situation last July with my Father. He was in the hospital for 11 days before he passed away from kidney cancer. He Was in the ICU and then in palliative care where he eventually passed. I didn't leave the hospital for longer than 3 hours at a time the entire time he was admitted. It was SO hard on my IC. Like you said, I was so used to being able to put my pain management and symptom management first, and at this point I could not do so. I was his power of attorney, so I had to be there every single step of the way. I hope and pray that your husband heals soon so that you can both get back home and get back to normal.
You are a strong woman, and I admire you. I've been following your FB updates concerning your husband, and he is a very lucky man to have a wonderful wife like youself at his side, watching out for his best interests.
I don't have IC, so I can't imagine how hard/painful this is for you, but I have been through a couple of incidents where I was terrified for my husband, and I couldn't deal with being in pain on top of such a stressful situation. I will keep you and your hubby in my thoughts. Hang in there.
I am so sorry that your husband is going through health issues. I can't imagine how tough that must be.
Years ago, when my symptoms started (not just IC, but also eye pain and other pains), my mom was battling lung cancer. I was one of her care givers and in between working and being in the hospital, I was beyond exhausted and in so much pain! I remember lying in my mom's hospital bed during the times she was wheeled away for tests because I could barely hold my body up. I pushed myself to the brink and was bedbound for months afterwards.
I also remember feeling like a "fraud" among family and friends who couldn't understand my invisible symptoms. I don't know what to say to make you feel better, other than that I can relate and I've been through that. What I've learned is that you also need to take care of yourself. The times when your husband is sleeping, you can go home and nap too. You cannot help him when he is sleeping or in the ICU.
Keeping you and your husband in my thoughts!
I truly empathize with you. I have also been hospitilized so many times. Fibromyalgia, Divertitulitis, Pancreatitis. Now, I'm trying to find a doc to diagnose Chronic Pelvic Pain. Somedays, I often just rather die & get it all over with.. although I am not suicidal; the lack of caring & lack of knowledge in the medical community is depressing. My husband is angry with me because I don't drive anymore, and he has taken many days out from work. We only have one car,too. It is all unfair & I suffer constant pain & I get grief about pain meds from doctors & now my husband yells at me. He doesn't help w/ anything around house & whenever I get home from hospital stay, the house is in horrors & mail & bills are piled all over kitchen tables. Dishes piled in sink & counter dispite owning dishwasher. Life is unfair, but when in constant pain, it becomes totally overwhelming, especially when events such as you are experiencing happen. No, no one can understand unless you go through it. I have no family support. Very hard. Have missed weddings, graduations, & so many other things. Friends drop away & you have to deal w/ isolation on top of everything else.. I will say prayers for you & your husband, although I sometimes feel that God is tired of me,too.. Hang in there; things will be ok with your husband, I'm sure. Take care...
Thanks so much for all the wonderful comments and compassion. Sorry it took me so long to respond, I haven't been on in a while.
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