My Life with Interstitial Cystitis: How I Survive the Hard Days

 I'm having another rest day, and I am not particularly happy about it.  Rest days are still an uphill battle for me.  I am one of the people who has been forced to believe that they only have value when they are productive members of society.  After a lifetime of being told, in no uncertain terms, that it is unacceptable to be unproductive, it's nearly impossible to allow yourself to rest.  This is where I am at now.  I know that my body needs to rest, but my mind will not allow it.  Even when I'm lying down to rest, my brain is going a million miles a minute.  I have Bipolar II and am currently in a hypomanic phase, so resting with racing thoughts is becoming even more difficult than before.  

Today's rest day is brought to us courtesy of frying chicken last night.  You got it!  All I did all day long was fry chicken for an hour in the evening, and I am in so much pain today that I can hardly even get out of bed.  I wanted to make a nice homecooked meal for my family while I was feeling well enough to do so, but it backfired on me.  The meal was amazing, but it is costing me a high price today.  Any of the tasks and chores that I had my mind on completing today have been put off until tomorrow.  If I'm lucky, I'll be able to get to them tomorrow.  If my body chooses violence again, I won't make it anywhere and my task list will get even longer than it is today.

The biggest pain I'm dealing with today is the pain from Interstitial Cystitis, which is a painful, chronic bladder disease.  It usually doesn't give me too much trouble, but sometimes it flares up for a few days.  I started having this flare yesterday morning before Michael left for work.  It was so bad that he had to give me a Pyridium, which is the main medication for my bladder pain.  It numbs the bladder from the inside, but it turns your urine a reddish-orange color, which can be a bit scary when you first see it.  Personally, I hate taking Pyridium and I prefer to just deal with it and take my pain medication when it's too intense to tolerate anymore, but sometimes the pain is just too much to cope with, and I must take the medication.  I have never been much of a fan of taking pills, so it's like pulling teeth to get me to take a Pyridium.  Michael always knows that the pain is too much when I ask for it.  

There are many activities, foods, drinks and medications that flare Interstitial Cystitis.  For me, the main IC triggers are sex, stress, spicy food and coffee.  There are other things that flare it, as well, but these are the main ones.  Today, it was the former that got the best of me.  I can avoid most of my triggers, but sex and coffee are my true loves in life.  I must have both each day, so I have learned to live with a much higher level of pain than most people could ever tolerate.  Most people would have gone to the hospital if they woke up in as much pain as I wake up with every single morning.  Unfortunately, when you are sick forever, they don't do a damn thing for you at the hospital or Emergency Room, so I avoid them like the plague.  A rest day is the best gift that I can give myself on a high-pain day, like today.  I must remind myself that while I am resting, my body is actively healing itself, so it's not really a wasted day or laziness, after all.  It's healing and we should always make time for that!

The treatments for Interstitial Cystitis are extremely painful and humiliating.  I have C-PTSD that was made much worse by bladder instillations, back in 2021.  I was going to Spokane Urology, and although they had wonderful bedside manner, the procedures were incredibly traumatic for me.  I can no longer have any catheter inserted unless it is under anesthesia.  During the instillations, I was naked with nothing to cover myself, in a room full of people with my very large husband holding me into place while they shoved catheters in and out of my urethra.  I still have flashbacks from those brutal procedures to this day.  I must give full disclosure here...  Michael never intentionally held me down for any of the instillations, but my previously traumatized brain interpreted it as such and now I am dealing with the fallout from that.  It hurts him to know that he caused me further issue when he was only trying to help me get through them.  This is something that I am working on with my therapist, so hopefully, this won't always be a problem for me.  She always says, "If you can feel it, you can heal it!" so we'll see what magic she can work for me.  

On rest days, I like to find something to occupy my mind with (if I'm unable to sleep).  I like to read, write, meditate, play Mahjong and chat with friends.  Of course, I haven't had many conversations with friends lately, but I know it won't always be this way.  Reading and writing are my two favorite hobbies, and they are low-energy activities, so they won't add too much fatigue if I partake in them.  That's the most important part for me.  I must find activities that don't steal all my spoons, if you know what I mean.  Spoonies must always be cautious of how many spoons (energy) we use on various activities.  When you have a chronic illness, one of the first things that you must learn is how to avoid using up too much energy.  That is an incredibly difficult lesson for me and many other spoonies like me.  You would be surprised how quickly your energy disappears when you have an energy-limiting illness like I do.  It is, by far, the most difficult thing I have ever had to learn, and I'm still learning how to apply it to my life to make it easier for me.  

Stay blessed, y'all, and rest up!