November 5th, 2018 - updated 10/19 - trying to describe my MAV experience

I wrote this to help my parents & Ron (husband) understand my MAV - Hopefully this info will help someone out there, so I'm shar...

October 13, 2019 An informed patient, & time...



This picture makes me think of a slow, gradual journey... 

My gastroenterologist diagnosed my irritable bowel syndrome - IBS - about two and a half years ago. I remember he explained about how the intestinal nervous system gets confused, and involved when there's migraine issues. IBS is, apparently, a common diagnosis when migraine conditions are present. This info was very helpful. I can have only mild migraine symptoms, and also have distinct IBS symptoms (sometimes in the moment, sometimes delayed).

My doctor prescribed IBGard. Unfortunately, he didn't give me any directions on how to take it. I wish I had asked more questions at the time. I have now, finally, educated myself by looking at the IBgard site, which thought somewhat repetitive, is also pretty informative. I listened, and now understand much more about IBS, how IBGard works, and how to use it.

It's going to take time for me to recover - at least a few weeks. Hopefully not more than that. If I'm not seeing definite improvement in a month, I'll contact my doctor, but  I know it's too soon now. One of the main ingredients in healing, is time. It's so hard to be patient. I hate that setbacks feel like they hit so suddenly, but recovery is always a gradual process. But that's how it is.


One day at a time.
One day at a time... keep breathing... take care of myself.... one day at a time.

Note: please consult your doctor for a diagnosis, and for treatment. What I'm sharing here is not meant to take the place of medical advice.

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October 10, 2019 Pacing, meds, & one day at a time


I was asked by several people "what happened? why this setback?". It's a fair question, since I was doing pretty well. Here's my answer -

1) Pacing - I've heard all my therapists say "you're really good at managing, you have good self-awareness" etc., etc. I appreciate the vote of confidence, but the reality is this - I don't ALWAYS get it right. As I said to my older daughter, pacing isn't fun. It usually means missing out on something.

I went to morning Rosh Hashanah services last week, did a little bit on the computer, and did a 1 1/2 hours each way trip out to Marengo to see family for a Rosh Hashanah gathering, including some out-of-town family. If I'm being honest, I didn't pace myself well enough.

The following day, I went to the Deerfield optimist installation dinner, to support my husband being installed for his final year as president of the club. I wanted to be there, but going to an evening event the day after Rosh Hashanah was a lot for me.

It's really hard sometimes to pace myself, because I want to DO, to feel normal.  But I need to not beat myself up for making mistakes re my pacing, especially since I pay for it when I don't pace myself sufficiently, which sucks. Pacing ALWAYS matters... taking breaks... even when I feel like I'm doing OK, it's good to stop and say "do I need a break, even a couple minutes?".


Was there more to this than my pacing?
2) Meds - the last time I had an irritable bowel syndrome (IBS) flare up, my body responded well with the med I can take as needed. This time I wasn't responding as well.  I remembered I wasn't on any other meds when my IBS was first diagnosed.

I also remembered having stomach trouble when I tried to go up in dosage on one of my meds, and had needed to go down. Maybe I needed to go down again. For various  reasons, I'm on more than one antidepressant, so lowering the dosage of one seemed safe.

So I e-mailed my psychiatrist, was polite and gave concrete information, & got the OK to lower the dosage of that one med some more, to help my IBS.

I also need to always bring my meds - especially the as-needed meds - when I go on an outing. That goes double if it's challenging.

3) Diet - my diet matters, and despite trying to communicate with the coordinator of the optimist dinner, my food was not prepared exactly as I have requested. Lesson learned - try really hard, on the rare occasions I eat in a restaurant, to speak directly with food provider/chef.

4) glasses - switching back and forth between my distance and near glasses can be annoying. Switching may even challenge me enough that I need to take a break, but I need to wear them. Given my sensitivity, even a few minutes in the kitchen without my glasses makes a difference.  My glasses - all three of them - help me. Chances are if I feel like I need a break, it's not because of the glasses.

Final thoughts –
One day at a time.
Give myself credit for problem-solving.
Remember self compassion, which sometimes means self forgiveness - I can make mistakes (pacing is so hard sometimes - I mean who DOES want to miss out?).
Try to be in the moment, in the here and now.
Notice ANY subtle positive change, not just negatives.


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October 5, 2019 Thoughts on a rough patch...



I seem to be going through a rough patch, so I found a piece I wrote back in 2015 about pacing (see the link below). Interestingly, though I've tweaked some things along the way, much of what I said in that piece still holds true.

Here are some things I'm reminding myself of -
Pacing matters, always, AND is a positive, because it's a big part of what gets me through rough patches. It's part of that all important thing called self-care. Sometimes I have to pace myself more than others, that's reality.

Speaking of reality, I didn't choose these disorders, but they are real. I don't like them, not at all, but they're real, and so are my symptoms.

Sometimes I know why I have a rough patch, sometimes not. Often it's a combo of factors. The reasons have nothing to do with it being my fault, that I didn't manage myself as well as I should have. Rough patches happen. Period.

I've gotten through every single rough patch I've had, every tough day.  Someone told me recently to write about what I can do. At first I thought "OK, I'll do that." And then I thought "but what CAN I do that's worth writing about?"

Then I realized, like every other person out there managing some kind of invisible, or not, chronic illness (or maybe more than one), that the managing is what we're doing.

We're doing our best to meet responsibilities, and enjoy life in simple, but worthwhile ways.
Like my cat Molly interrupting my few minutes of flute playing when she jumps on my lap, and lays down on my flute case.
Grateful my daughter may be able to sew patches on my jeans.
Grateful that Ron is able to run all our errands, be a set of functionally healthy eyes to look at what I'm unable to, and hug me.
Grateful that I can DO self-care, including but not limited to all the cooking I have to do for my diet.
Enjoy the beauty of a tree changing colors, that I notice on a walk with Ron and Cosmo.
  


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