Bowel and Gastro Funfest

[ibartist]

Hi Im Debra (ibartist) diagnosed this Oct.

Hope Im posting correctly
Wanted to throw this one stream of consciousness/situation out there among the myriad of other stuff we all have at our own random levels of ickiness.... hope you this stream to make some sense...

Since I was 16... Im 47 now, I had always had problems with digestion. So im not surprised MS is messing with my Vegus nerve etc --

Ive been gluten free for over 20 years - eat no fried anything, sugar drinks, bad fats- and for protein I eat mostly fish and legumes. Perfect BP,blood levels etc -- always.
I was an avid runner, 6 day a week tennis nut and quite savvy with traveling the world alone (work), skiing, motorcycle, spelunking.,, well I have always been pretty capable and took care of self
hmmm:

Last year the symptoms started to ramp up (ironic note: as I see so many that are couch potatoes, smoke like crazy and only eat McDonalds and drink Cola all day - ohhh they are fine,,, its me, miss 'takes her vitamins' etc - that has all the issues) but I digress,,,,

so heres one chain in the many that make the randomness of MS so maddening.
- I was admitted for paralytic ilius, two years ago then last year admitted for chest compression an food would not stay down, THis year admitted for gastropariesis in the extreme no food or water would digest - no bile no activity whatsoever so had a balloon endoscopy.
Then>>> Two weeks later - a follow up colonsocopy became major emergency surgery due to a puncture during procedure - . And because of the MS mix --- im put back so far from where I was starting to intake foods exercise, stretch, learn how to move --

Big Question - How do we all not just go looney!? From the outside, I look great (which is always the first comment " (but you look so good") - mostly im able to laugh with it and poke fun at self and make jokes about my cane --
But there are times when I feel like it just too much - no break to try to figure out how to come to terms - because it seems non stop new issues
Sometimes the small things too - like putting on a shoe with internal stiches are more frustrating and frightening than the big symptoms and flare ups --

Sorry so long -- but what do we all do aside from laughing off this stuff -- cause there are times - i just get too worn out to chuckle - and I feel Im being pulled to the dark side. Meidtation, breathing - do help - but Im breathing more and more like the Sith -- not cool.

well at least after my Spinal Tap -- I can honestly say - "I go to 11"
Hey cheers to you all ---
artfully
D

[havingfun]

I pray a lot. And cry big heaving cries. When people comment how well I seem to be doing, I tell them I cry in private. Antidepressant helps mood as well as all-over neuropathy pain. I'm seeing a counselor, though visits are spread out due to insurance. I'm not as athletic as you, but did exercise and eat right. I keep cheerful most of the time but let it out when I need to. I am very fortunate to have people that allow me to talk when I need to.

My doctor told me I would be much worse off if I didn't take care of myself as I did. It kept me trying but ticked me off too. It wasn't fair.

My heart goes out to you. Keep reaching out.

[Suebee]

I think anyone with MS or other chronic illness understands the frustration, isolation, and fear that can creep up. One has to find a way to make peace with it somehow. For me, I have the most peace when I can embrace my situation, with acceptance I move forward. I want to be the best I can be, not waste my energy on things that don't matter and focus on what really is important. It isn't a perfect answer or easy solution, but it's based in faith. Faith I am here for a purpose. Know you're not alone. Suebee

[ibartist]

not alone

thanks for the replies -- my neuropsychiatrist has told me many times - sometimes you just have to say 'oh well' and keep moving (or not moving). Recovering from surgeries is a bummer process - but NOT recovering - would be tragic, so it's a matter of attitude and acceptance.
I just moved from an apt to a little house - immediately planted a butterfly garden..this has been so healthy - to put my energies into creating a lifecycle and haven for critters. Purpose and intention, I believe, are great tools in looking outward and forward. Today - a little chrysalis is hanging from one of my plants... Change... can be frightening - but sometimes altering/adapting purpose/intention to align with the change - beautiful things can happen.

[havingfun]

ibartist,
I'm happy you are doing better. A butterfly garden sounds beautiful.

[ibartist]

thanks and good tidings -- we are all in this together my friend

[MrShibumi]

New member here This post hit home hard for me. I'm a person that pre ms was very active socially and physically until the ms kicked in. My darkest times seem to come when I realize after the fact how much my athleticism and fitness was a part of my self identity and unfortunately the feeling of not being a provider like I had formerly been.
I now roast coffee for a living and lift a couple thousand pounds of green coffee a day (50 lbs at a time), while being on my feet 40hrs a week. A victory - I know, but it leaves me in the mindset of getting home to my safe zone and chilling out as quickly as I can which to healthy people seems like I'm just lazy and withdrawn because I too have very few outward indications of how I feel and no amount of explaining seems to resonate with them.
Needless to say,not much extra exercise or activities for bonzo lately which leads to an activity that I've found to be helpful in pulling me out of those dark times and getting me a bit more exercise on occasion too.

My backyard is typical postage stamp size for an urban area and over the past couple years I've been feeding and housing a colony of 6 feral cats that used to live in the alleyway out back. The backyard is now theirs and they've become my go to remedy when I'm feeling frustrated and down.
From trapping them to get them spayed/neutered and vaccinated, to building them shelters to get them thru the winter months to sitting out on the patio surrounded by the horde, they are something I can look forward to 1st thing in the morning. Having them surround me looking for their dinner when I pull in for the evening is something I look forward to every day. One or two always seems to be missing, which gets me out walking the neighborhood looking for them - so there is a little bit of exercise involved as well

The psychological healing power of those cats is mind blowing to me and it is so rewarding knowing that I help them in little ways in a life that is so much harder than mine.
Being single with no kids, this small kindness on my part has made me feel important again and that someone(a bunch of alley cats ), can actually rely on me to take care of them when at times I find myself wondering how I even take care of myself.
I suspect the same positive effects could be had by helping anyone or anything that needs it. Ie, rescue groups, dog walking at local shelters and probably even more so, working with children in need.
Sorry about the rambling post, it's great to have finally joined the group after yrs of reading Dave's awesome newsletters!

[loopylady]

Those are some lucky alley cats!