IC Disease

There are many chronic illnesses out there that can leave people feeling so much pain and fatigue that sex is the last thing on their minds.  With all the demands of living daily life - working, taking care of a home, raising children - sex is the one enjoyable part of life that usually goes but it shouldn’t. 

The American Academy of Family Physicians has some great suggestions on how you can still enjoy sex despite being sick and in pain.  Here are some of their suggestions:

• Plan sex around the times of the days that you feel the best and have the most energy. 
• I know it sounds easier than what it really is, but try to get as much rest as you can and try to relax as much as possible.
• Don’t have sex within two hours of eating a meal.
• Take your pain medicine at least 30 minutes before having sexual relations.
• Alcohol and tobacco/smoking can both affect sexual performance so limit using these. 
• Most importantly - HAVE FUN!! 

Do you ever feel like you are alone with your chronic illness?  Do you feel like even with support from family and friends that you are still fighting a war by yourself? As often as people say they “understand what you are going thronugh” there is no way they can unless they walk a mile in your shoes.

My husband is very supportive of me but it is a strain on our marriage and relationship at times because I am just too physically drained from my illnesses and feel so miserable that I can’t even focus on a conversation he is trying to have with me. I will also try and hurry him up at times when he is talking because all I can think about is how bad my head hurts and how his talking is just making the pain worse.

It used to be that I would try and explain my actions and symptoms so that he would understand but I don’t even bother anymore. It doesn’t seem to matter.

Tonight I found a news story online about a teacher who just retired for the second time due to her Interstitial Cystitis.  She was a teacher for over 30 years and her Interstitial Cystitis is so severe that she had to have her bladder removed.  She quit her teaching job when she had to have her bladder removed.  She then returned to teaching when a new bladder was built for her. 

But only four and a half months after she returned to work, she started having problems due to her IC Disease again and has now decided to completely give up her teaching career. 

It is so sad how IC Disease takes away the things that so many of us love to do.  If you would like to read more about Cherri Stone and her story, click the link below.

GK Teacher Stone Retires

Ever since I first became ill several years ago, it has been a passion of mine to share with others what a day in the life of IC Disease, Fibromyalgia and Chronic Fatigue Syndrome is like.  But there are times when I feel as though by explaining what I’m going through I have to defend myself - and we shouldn’t have to defend how we feel to anyone.  I think that I have dealt with my illnesses rather well, but there are days when I just want to be normal.  I want to be able to go to work and not fear that I’m going to urinate myself or have a major flare because I have to try and hold my weak bladder longer than necessary.  I would love to be able to volunteer to do extra work and to be able to help out people more, especially my family, because my body will give out if I give into my heart. 

I don’t want to have to think and feel that I have to justify the looks I get when I have to park in the handicapped parking spaces at the store because my back is in knots, my Fibro pain is too bad, or my CFS is flaring and I don’t have the energy to walk, or my IC is so bad I can’t take the pressure in my pelvic region. 

Typically this time of year I feel a little down sometimes because with all of the hustle and bustle of Christmas I fully realize how limited I am with activities.  I just try to keep my spirits lifted by remembering what I can do.  Okay - enough whining for one day! 

It’s almost Thanksgiving and I have always made it a yearly tradition on my Fighting Fatigue website to write about what I am thankful for.  When you are chronically ill, it is so easy to feel depressed and to think that life sucks and there is nothing good in life to look forward to.  But that’s not true.  By making a list of what you have to be thankful and grateful for, you realize just how good you do have it and it is great for your emotional health.

I find that when things get rough, it is helpful to make a list of what is good in my life and what a better time than Thanksgiving to share it with everyone!  If you would like to add your list of things you are thankful for in the comments, please feel free to do so!  Here’s what I’m thankful for:

• A great husband
• An intelligent, well-behaved child
• A supportive and loving family
• Even though I’m sick, I’m healthier than a lot of other people
• The courage to continue to fight against chronic illness

I’m not a doctor or a professional anything, but one thing I do know a lot about is being chronically ill and over the years I have developed my own coping skills and mechanisms for making it through each day.

So for what they’re worth, here are a few of my holiday coping tips.  Please provide your own!

• Do not attempt to complete all Christmas shopping in one day.  I break up my shopping trips into the age groups I’m purchasing for.  For example, I usually shop for my parents, in-laws and adult family members in one trip.  I shop for the children in the family in another trip.  I usually keep my son and husband’s shopping to one trip each since I buy more for them than anyone else. 
• Wrap as you buy.  I wrap my gifts as I purchase them and then I’m not stuck wrapping a bunch of gifts for hours at a time in one sitting.  I don’t like wrapping either so the fewer gifts I have to wrap at a time the better off I am.
• Go with gift bags.  I always wrap children’s gifts but I like to use gift bags for a lot of the other presents I buy.  It saves so much time and is easier.
• Go out to eat for your holiday meal.  If you can afford to do so, go out to eat for your holiday meal instead of using all of your energy to prepare a meal.   If you do have to have company over to eat, have everyone bring something and specify what you want each person to bring.  This way you don’t have to make it all yourself.

Now that Thanksgiving and Christmas are upon us, I got to thinking about how hard it can be for those of us who are chronically ill to make it through the holidays.  The holidays are always a high-low time for me.  I enjoy them immensely, but yet I always feel exhausted, worn out and overwhelmed because I end up doing too much regardless of how hard I try not to. 

On my other health blog I ask my readers to comment each year with their coping tips for holiday shopping, meal preparations, and gift wrapping.  I would love to do the same thing here and I hope that readers will join in and offer their best tips for making it through the season without ending up bedridden. 

Tomorrow I will post on some of the tips I have found to be helpful over the years.  Have fun commenting!

Most people don’t understand and can’t even begin to comprehend how IC Disease affects a person’s life.  IC Disease patients will often experience feelings of despair and helplessness that any human being should never have to experience.  While there is more in the news and known about IC Disease today than ever before, there will probably never be enough compassion, understanding and empathy felt for the sufferers.

Thanks to organizations like the ICA and the IC-Network, more research and continued efforts have been made to make physicians, patients and the community aware of the severity of IC Disease.  We need more patients to come out with websites and blogs that will get even more information out there about the severity of IC.

I found some astonishing statistics a while back on the various aspects of chronic illness.  One statistic that really stood out to me is that the divorce rate among the chronically ill is OVER 75%.  Why did this statistic stand out to me?  Because my first marriage ended partly because of my ME/CFS & Fibromyalgia, even though I didn’t  know that I had FM at the time.   I have been happily married now for the past 10 years and we have been together a total of 14 years and BOTH OF US have chronic illness problems.  My husband has heart problems.  He has had triple bypass surgery, stents placed in his heart and has had at least 7 heart attacks.  So what is the divorce rate statistics when both partners are chronically ill?  In my opinion, I think the divorce rate would be lower because the spouses would understand each other better and would understand better what each one was going through.  That is how it is in our situation.

This high statistic for divorce proves that when the vows “for better or worse, in sickness and in health” aren’t taken as seriously as they should be. 

Once I got over the initial shock and the grief of having yet another chronic illness, I dove into reading as many books as I could find on chronic illness, Interstitial Cystitis, and the illnesses related to IC Disease.  Reading books, especially those written by other chronic illness sufferers, has been a real eye opener to me because it made me realize that I am not crazy, what I feel is normal for those suffering like I am. 

Another way to take control of your Interstitial Cystitis is to find the right doctor.  You need to find a doctor who is both knowledgeable and supportive of you and your illness(es).  Be prepared when you go for your doctor’s appointments by having all of your symptoms written down and any questions that you may have. 

Apply for Social Security Disability if you are no longer able to work.  If you have disability insurance through your employer, you can apply for your short-term or long-term disability through them. 

Help raise awareness for IC Disease by writing to your state’s senators and representatives to encourage them and educate them on IC so that they will want to support funding and research.

Most importantly, take care of YOU first!