Wednesday, July 10, 2013


Today I am just going to write about various thoughts that have been running through my head and not specifically one thing exactly. As the title says, these are the "Thoughts, Ruminations and Ponderings of an IC Patient."

Sometimes I struggle with the challenge of my Blog on my Journey with IC. I wanted so badly to write about IC, recognize that it is a struggle for us all but try to focus on my Blog being a place of support, encouragement and positivity too. Sometimes I get my own version of "writer's block". What should I say today? I don't want to repeat myself or make those of you who read this Blog feel you are getting nothing out of it, so it's important to me that I post something useful, no matter how small. 

Today I have been thinking about what I should write; should I even try today. Then it hit me. This is also part of dealing with IC. One of the things I talked about yesterday with my psychologist was the feeling that being on Disability tends to take a mental toll on me; I believe it does for all people on Disability. I know better, but there is still part of me that feels I should be doing SOMETHING. I still feel "guilty" because I am not working. I thought I had worked through a lot of those feelings, but they are still there - kind of lurking in the background - and maybe always will be. It is something to continue working on. I have my ups and downs and it impacts my desire to put effort into things: my Blog, trying to walk, working on my diet. I feel these things overwhelm me sometimes. That the effort it takes to do any or all of them is difficult. I think this is true for many IC patients. We all find coping and dealing with everyday responsibilities, or even the lack thereof, to be an emotional struggle.

I talk a lot in therapy about how to cope with boredom. This Blog in and of itself is a means to bypass boredom, try to feel useful and give something back to everyone struggling with the same issues. For some, it's trying to "live" with their IC, continue to work, manage families and spouses. For others, like me, it's having had to sell my home that I worked my whole life to finally get, and move in with my parents. Yes, it's a blessing to have them healthy and able to take me in. But nonetheless, it has its own challenges.

So it dawned on me, that the very thing I was struggling with was something that maybe all IC patients could identify with. I know working with my therapist is helping me a lot. I could not cope the way I do without working with her. But it is a work in progress. 

I have a wonderfully supportive family and a small, very close group of friends that support me and stay in touch. I have my IC friends that do the same and I feel like we all watch out for each other. 

Yesterday I had my weekly instillation appointment and that was much needed. I had to skip the previous week due to many conflicts and skipping a week is no fun for me. So I am back on schedule and that helps a lot. I don't know what I would do without them. I know they don't work for everyone but for me, they are my "magic bullet". 

I think we all fight the urge to just "quit" and give in to these times when we struggle with our IC and the limitations it creates. But it's what we choose to do about those feelings that's important. I have reached the point where I can stop, think about it and sort of walk myself through what I am feeling and how to cope with those feelings. Therapy is making a difference in my life.

Do whatever helps you cope. Meditation, Yoga, listening to music, watching your favorite movie on DVD or reading a good book. Take a bath if that relaxes you. Learn to "listen" to these feelings you may be having; it takes practice. But if you work on it, you can find ways to take your mind off the negative emotions and set them aside and work on re-focusing on positive ones. I also like using Positive Affirmations. Find one you like, put it on a sticky note or something and put it in various places where you will see it throughout the day. 

Here's a link to a good site on using Positive Affirmations for people struggling with illness.

1 comment:

  1. My burning has been killing me lately. I know how you feel on that "need to be doing something". Its amazing how this disease robs us of our whole lives. As we get older, it gets worse.