Day 34 Reinforcement

Today's educational topics were really good reinforcements for me. I do think I have been too focused on how well my bladder is doing a lot of days. And I still have some doubts because IC is so different from other TMS types of pain.

I really appreciate two of the things I read today: one is Alan Gordon's advice to stop reinforcing the rat-food in my brain of giving it fear and attention. I also appreciated the link within Gordon's essay to the definition of PPD. I kept seeing that and wondering what it was. Sounds like post-partum depression. The link defines it as Psychophysiologic disorders, because nerves are also affected by TMS. Nerves are a big part of bladder pain.

For the last 4 years that I've had this condition, I've fought so hard to try and find the root cause. I was pretty relentless; I couldn't understand people who said they've "already tried everything", because there's really an infinite amount of things you can try to do to get better. At that time it meant anything and everything I heard or read that got other people out of their IC pain: acupuncture, diet, physical therapy, endless supplements, and so on. Whatever my "new" thing was, I was convinced it would be solution and couldn't wait to share it with my friends from the IC support group.

I'm doing the same with the MindBody stuff now. I can't wait to get better, then share my news to the IC community: online, at the support group, my friends with other TMS symptoms. I even find myself rehearsing what exactly I'll say or post once I'm better. This all links to my noticing during meditation that my mind really tends to wander into future thinking and planning. What will I do tomorrow, I need to text this person, etc. Which links to my anxiety.

Interstitial Cystitis, or bladder pain, is really difficult to overcome because you can't just stop caring or acting like you don't have it. With back pain, doing certain physical movements and having pain reinforces it. But with the bladder, not only will certain physical movements aggravate it, eating certain foods (citrus for example, activates your nerves), intimate contact that presses on your bladder, your bladder filling up with urine and not only having pain, but urgency to have to go to the bathroom right now!

Tonight I start my first class of a weekly Mindfulness Based Stress Reduction course (MBSR) and found out I'll be expected to meditate 45 minutes to 1 hour every day, so I certainly won't be able to continue this program on a daily basis anymore. Maybe that's where I'll find my balance...

 

Hi, prisd. Doing the new MBSR course sounds great. Don't fret about not keeping up with the SEProgram while doing the MBSR. You can always return to the SEP later.

I think the bladder thing will resolve itself, the more you deal with your TMS emotions.

 

Hi there how is the class going? That's really impressive to try to do that much meditation with a little one at home. I so can relate to trying to find out the root cause of trying to figure out how this happened, etc.
Sometimes if im worse I want to blame certain foods or drinks, which I know is leading down the physical path. There are definitely times where things have been pretty uncomfortable lately and I know it's due to anxiety. My four-and-a-half-year-old likes to drink a lot of lemonade and today he went to the bathroom 4 times Within 75 minutes. But of course he feels fine, maybe it's okay to go to the bathroom more often sometimes?
I so can relate to having that plan to post your wonderful story of recovery. I've envisioned what I would say too. Well, I remember reading about meditation actually increasing rates of healing from psoriasis inpatient or receiving light therapy. I've just been going once a week. 2 meditation that is. I had to miss the last session. I'm hoping going again this coming week helps. I'm also still working on trying to not let this get me down. Some days I'm OK and other days it's just overwhelming. Hope your class is great!

 

Hi she333, ahh good to hear from you - my fellow IC sufferer. The class is good but challenging. I'm really noticing a lot more anxiety this week (I think because my naturopath put me on thyroid - which I since cut down on), so it's been even more challenging to keep my mind still. We did a 45 minute body scan in class and it was pretty torturous! Plus I had to pee halfway through it. But I enjoyed the mindful eating exercise. It's been challenging for sure to find 45 minutes of uninterrupted time every day. The first time, my daughter woke up 25 minutes into the meditation and that was the end of that. But since then I've tried to do it when she's at school (she goes 3 mornings a week) or when my husband's home.

That's funny. my almost-four-year-old also loves to drink lots of lemonade then pees more often. I make it with Stevia. But other times, she can go 6 or more hours without peeing at all so I know she's fine.

So, you read that meditation increases psoriasis healing, and so does light therapy? Or you mean it's more effective than light therapy? Just wondering, because at one point I saw an autoimmune dr. who recommended light therapy to me for my IC, but I never did it.

That's great you're going once a week to meditation class - so good to get some time for ourselves. I hope you can make it this week.

 

Good luck with your MBSR class, prisd! I admire your tenacity and your willingness to try anything that might help alleviate your pain. My experience has been that when it came to healing two of my three major health events, I was the one who stumbled on something that works--not the MDs. Doctors are great for dealing with trauma, but have a way to go in addressing chronic issues.

 

Thanks Gigi for the reminder and reinforcement that this is a mindbody condition.

 

The meditation increased the response time to the light therapy so it was used in combination.
Anxiety can be tough. It seems to worsen my symptoms. Friday was awful, then yesterday was pretty good. While that is so frustrating, I hope it's a sign i have the potential to improve and yes this is influenced by my mental and emotional state.
Yes, it helps when they go to school for a bit. Are you doing anything else helpful in the class?

 

Well, I've only been to 1 class out of 8 so far, so can't tell you too much yet. There's a lot of openness and sharing among everyone in class. Our homework assignments this week were to eat one meal mindfully and do the 45 minute body scan every day. I'm not sure how much I'll really get out of class since I've already gone to a lot of meditation classes and already had my practice going at home.

 

Hi she333, Just finished the MBSR class and thought I'd check back in. It was a good class, but too expensive - not anything really enlightening or life-changing if you've already done a bit of meditation and/or buddhist study, which I have. I guess it forced me to meditate every day which was good. I REALLY enjoyed the 1-day silent meditation retreat which was part of the program. I also learned that Yoga and Body Scan are meditations too; I learned to enjoy the body scans, and I never really thought of Yoga as more than relaxing exercise until I took this class. I also try to be more mindful at times during the day when I'm not meditating. That's really tough though -it's just hard to remember to be mindful, at least for me. But overall, a very positive experience.

 

Hi prisd,

Do you happen to remember watching this video on the SEP program Day 6?
http://www.tmswiki.org/ppd/Educational_Program_Day_6 (Educational Program Day 6)

Watch it again and pay attention to the "outside triggers" part that he talks about. The reason I say that is because I can relate a little bit to you because I am doing the program for migraines and I feel like it's a little bit different than what the majority of people here have.

For instance when you talked about food, I completely know what you mean. I can't have certain things and to just go about like I am a normal person and eat cheese pizza for instance would be a death wish for me. That would be part of the outside triggers he mentions in the video. Other things like loud sounds or headlights really bother me. Those are things I cannot control. An example is last Friday they were jack hammering here at work and I went home because I had a migraine coming on and then by Sat morning I had one all day. I let my brain have it's way. My point is, ever since I watched that video and learned they were outside triggers and out of my control I've been telling my brain that it can't react to them anymore.

Also, I too related to the preoccupation article by Alan about the rat on the wheel. I put those two things together and have been trying my hardest to tell my brain it will not have it's way day.

For example, I had iced tea at lunch the other day and when a migraine started to come I told my brain to forget it and that I would not be going home to take care of it. I even had part of a bagel 2 days in a row. It's been working. If we believe that, for instance citrus will trigger an attack then it will because we're giving our brain exactly what it wants. It's hard but it's been working for me and that is something I would never, ever, EVER have done before I knew about TMS.
I think as we get stronger our nervous system stops responding to every little trigger as well. What do you think?

 

Hi Ines, Thanks for the post. I'll definitely watch the video again. I'm sorry, but I can't exactly relate with your migraine issue only because, with interstitial cystitis/bladder pain, acidic foods really do "hit the nerves" so to speak. My gynecologist gave me a list of foods I could and couldn't eat that's common to most people with IC. The theory is that the lining of the bladder is thin or damaged and/or the nerves in the bladder are overactive or exposed, so acidity really does set it off. I have eaten things in the past that I didn't even realize had a no-no ingredient in it and couldn't figure out why I was in pain until I read the ingredients. I agree though that I can make the trigger feel worse by worrying about it. And I agree that hopefully if I can overcome TMS in general, I won't have to worry about my bladder at all.

 

That sounds painful. I hope you find some relief doing this TMS stuff.

 

Hi prisd. Thanks for the update. Too bad the class didn't offer a lot of new info. Sucks food does impact you at times. It's like, is this a little physical, remainder TMS? But, if we worry ourselves into an ulcer or GERD then we do have some sensitivity to certain things, at least for a while. Doesn't mean it can't improve. I don't have the food reactions. It's more stress, drinking too many fluids, sleeping poorly, and sometimes even exercise that I react to. I keep waking up at night terrified. And then I'm like dying to go my 5 ounces in the bathroom. I need to do meditation more. I've started working with a therapist and I told her about TMS abdominal she agrees with it. She's seen people with IC. I have a vacation in 2 weeks. Hoping this doesn't have a negative impact, but hey at least I'm going.

 

I have had bladder problems for years if I had orange/lemon juice or drank a lot of tea and other acidic foods. That being said, I think some of it is physical and some is psychogenic. I have a feeling many things were triggers. I ignore all diet restrictions pretty much now except tea. No more IC problems but I had others to take its place. As SteveO says in The Great Pain Deception, always be a little skeptical of everything your doctor says.