Interestingly, I was okay yesterday (1/23/19) despite the flare from the evening before and my CFS flare was easing up a bit. Though still extra tired and hard to move, I decided to run to work and drop something off. Well, little did I know my bowels had another plan. Half way there I had an IBS flare, out of nowhere. Thankfully I was close to my dad's house to make a pit stop but I never made it to work.
I did, however, use that restless energy to do 1.5 hours of pacing around my dad's house (what I do when my stomach and bowels are in disarray) and I then decided to see if I could make it home - which I was able to do.
It is instances like these, the unpredictable IBS problems that make me agoraphobic. (Afraid to leave the house in fear of not being able to find a restroom in a sudden moment.)
Some back story: when I was 6 months old I had an intussusception - a rare medical problem in which the intestine telescopes into itself causing an obstruction. I ended up having 6 inches of my colon/large intestine removed and it was fused back together. While they were in there, they took out my appendix for good measure. (We don’t need it anyway, and while it was fine, they figured they would save me a potential additional emergency surgery.) Ever since then I have had bowel and stomach issues. My life has been IBS, bowel problems, food sensitivities, and a connection between being nervous/anxious and it sparking a #2 in seconds which gets more severe the longer I am anxious. But it goes both ways. So if I have a normal BM situation, I feel a wave of anxiety with it too.
It was in therapy that I realized I have been agoraphobic the whole time – even as a kid. But all for the same reasons. I hated field trips and bus rides. Going to school in the morning was rough. Kudos to my dad for always dealing with me and I never rode a bus to school, dad always took us (mom wasn’t mentally there most of it, and she left our family in the late 90’s early 2000’s.]
I had a hard time everywhere we went and I have used every bathroom on most highways from here up to New Hampshire and back. I have had IBS problems everywhere too – every friends house, every family members house, on the way to or on the way home from their houses, at the mall, most stores I frequent, etc. And I have been stuck in every situation imaginable which makes me feel more agoraphobic.
By situations I mean: 2 times Red Sox opening day. Took me 2.5 hours to get home from school, even longer to get there. Construction on Route 9 in Brookline causing my commute to school to be 25 minutes to 3 hours. I sat in a blizzard on my way home once that took, no lie, 4 hours. I was rerouted one day on my way home around Boston/Cambridge only to find out later there was a bomb threat at one of the hotels. I have sat in hours of traffic everywhere. And I find it to be a living nightmare. This is why an RV looks so good.
There is a wonderful article/story online about a woman who I find myself similar to in many ways and I loved the story. Her husband got her an RV and she took it everywhere. (Essentially, for those of us who have bowel issues, it is a restroom on wheels.) And it is comforting to know I am not alone. Another reason why I am telling my stories now. (You aren't alone either.) https://www.thecut.com/2016/06/what-its-like-to-solve-your-crippling-agoraphobia-by-buying-a-motorhome.html
People don't talk much about their bowels but bowels are like anything else. We all poop. And I think it is time people talk more about it.
So in my IBS flare with restless, high stress, anxiety ridden energy (for me BM's correlate to anxiety and vice versa. I can't be nervous or anxious without a bathroom run or ... many of them.) I used that energy to pace about 6,000 steps according to my Garmin and then I used it to clean up my room, fold my laundry (from yesterday's post), take out the trash and make some rice I didn't end up eating.
It happened around 4:15-4:30pm yesterday. I paced from 4:35ish until 6:00pm. I drove home (about 10-15 minutes or 30 with traffic - my enemy.) I got home by 6:25-:630, folded my laundry and put it away, cleaned up my room, took out the trash, made sure my fiance fed Jinxy (which he did) and then by 7:30 I hit a wall and crashed.
I nibbled on tortilla chips, sipped ginger ale (both are what I consider 'safe foods') and we watched The Rookie which was good but didn't help my stress. And then I ate plain gluten free vegan waffles while we watched The Masked Singer. Followed by bed.
What caused the IBS flare? I have no idea. I think I will eliminate eggs from my diet for a couple weeks, not take supplements (which sometimes bother me), and simplify, if you will. Simplifying seems to work best for me. When I try too hard to improve how I feel, it doesn't usually work well and something like this might happen.
Thankful still and highly grateful I can and do work from home.
If you have medical issues - never give up trying to get better but also try not to beat yourself up about it.
What I am learning and having trouble with most is self-compassion. I get mad and impatient with myself because I don't feel well or because I didn't make it to my destination. But I need to learn to be kinder to myself. I am working on it.
Sign up for email Newsletters