Still learning to adapt to the changes MS brings.

[Equitube]

I was diagnosed 3 1/2 years ago with RRMS (Relapsing Remitting) after an attack that began with numbness in one foot, spread up to my chest and left me with about a 60% loss in vision and double vision. (Ironically, about 2 1/2 yrs ago, I got drunk, fell and hit my head on a rock and it knocked my vision back into line. The doctors were amused though I did caution them against adopting my unorthadox treatment protocol.

Though my symptoms have reached mostly managable levels now. It's taken some getting used to. Fatigue was bad at first but has improved like about everything else through excercise. when I began I couldn't walk very far without stopping I can now walk up to 6 mi comfortably and have even doubled that figure once. However, that cost me dearly in energy and recovery time.

WARNING possible TMI ahead

Besides the numbness, my main troubling symptoms are cognitive difficulties and forgetfulness on the mental side and neurogenic bladder and bowel on the physical side. Talk about the Yin and Yang of MS symptoms. It's flood and drought, rivers and deserts, stop and go.

My bladder has the *cutest* way of spasming at inopportune moments. It's like a vise suddenly squeezed tight on your bladder and said "We're goin NOW" ignore it and let's just count how many times I"ve driven home unexpectedly and damp.

Round the corner, the opposite is true. Nerve damage is a strange animal. The same processes that make me feel like I have the (full) bladders of a dozen men also, at random times, throw the switch that shuts down my digestive system. No laxatives will work and If not picked up on quickly I'll be back in the ER facing abdominal surgery, or even worse,

Manual disempaction

I'll spare you the gory details, but for those who don't know, manual disimpaction involves a lot of olive oil, nudity, and exploration. But before you sign up, know that as soon as you sign, a nurse with ham hands and fingers the size & shape of small bowling pins is about ready to see if she can remove your tonsils - from below.

After ordering 5 seperate laxatives, one an IV version, and three types of suppositories to no avail, my doc had given up and I being wheeled face down, half covered bare bottom up displayed on a gurney as I was being pushed down a back hall where I was slated for 'disimpaction'. Where nurse FatFingers probably warms up by examining a few bellowing cows butts.

I trembled in anticipation of the very long, very painful, very humiliating procedure when my previous nurse stopped in passing. He suggested enemas. I'd never tried that and it sounded a bit better than being dug out. Though I was no longer his patient, my 1st nurse got an order from my off-duty Dr, got the equipment, and even came in on about half his lunch hour to demo/teach my new young med tech in this skill.

It worked beautifully and quite easily. I was held one more day for observation and was so grateful to this middle-aged nurse and college-aged med tech for bringing me relief that I allowed three of their training young techs to administer an unneeded enema to me so that they could be certified on this useful and nearly forgotten about remedy.

My gastroenterologist agrees at least in part. After seeing my results, she prescribed two enemas each Thu and arranged for a home health nurse to assist me.

[greaterexp]

Thanks for sharing your less than pleasant experiences with so much humor. I think seeing the humorous sides of things is what keeps me somewhat sane. My friends and family may belong to another school of thought on that, but it works for me.

[Equitube in reply to greaterexp]

I've been a student of comedy my whole life and think that we all went downhill as a society when we forgot how to laugh at ourselves.

[greaterexp in reply to Equitube]

Amen!

[Birdymom3 in reply to Equitube]

How true , M.S. if you think you might have it figured out it plays a "trick" on us , you have laugh about it it's better than the alternative helps try to keep a positive outlook on it .

[Jesmcd2 CommunityAmbassador]

Hi Equitube nice to meet you! Sorry, for such unpleasent circumstances! Gotta love the bladder and bowel control. 😔 They do make meds for that!😉

Welcome to the family! You will find a ton of support and helpful hints around here! Just ask and have a look around! 🤗💕🌠

[Equitube in reply to Jesmcd2]

I've tried every bladder med out there. None helped & one (Tropsium HCL) shut my bladder down and had me using catheters for about a month.

[Jesmcd2 CommunityAmbassador in reply to Equitube]

Ok, no meds for you then! 🤣

[Equitube in reply to Jesmcd2]

It's gotten much more manageable this year though

[Jesmcd2 CommunityAmbassador in reply to Equitube]

I'm so glad to hear that! Did they get rid of the numbness you had/have also?

BTW, good job on fixing your eye! 😂🤣 I spent the whole summer pretty much wasted while my leg spazed out. It wasn't pretty.😂🤣 That was before DX. Now I can't drink at all. And it so suuuuckssss!!!!😭😭😂🤗💕🌠

[Equitube in reply to Jesmcd2]

I still have numbness in my feet & ankles all the time. I am supposed to be on Gylennia but am taking nothing so I can drink, and consume the fine legal cannabis that's dirt cheap here.

The heck of it is that I no longer wish to get drunk or too stoned. I'm getting a bit older now and I hate hangovers.

[twooldcrows]

i am so sorry that you have had to go thru so much to get relief...wow ...so glad you can laugh about it for that is so true it does help to get thru all of the bs with this monster they call MS...i call it the monster that is how i go thru life with it ....so glad to read you page it made it not so evil of an experience ...love and much happiness anyway you can get it...with lots of laughs i do agree ....

[goatgal]

Thank you for sharing with candor, leavened with humor, some of the humiliations that MS can inflict upon us. I read with interest because though constipation is listed as a effect of MS, what happens to many of us is not exactly constipation due to poor diet, or sitting too many hours. The cause is the same faulty signaling that causes sudden weaknesses or lack of control in other body systems. Many of us were taught at home that natural body processes were not to be talked about and consequently feel embarrassment bringing up topics related to bowel, bladder and sexual problems. I know it is difficult for me. As someone who has noted the onset of days when I have urgency and other days when I know the bowel is ready to evacuate but unwilling to move things along, I truly do appreciate your post. It will help me to be more open about this issue.

[Equitube in reply to goatgal]

Awesome. One thing I've learned through all the Dr visits is that I'm not a bit shy anymore. Heck, I could darn near let them give me a colonoscopy for the Superbowl halftime show. (hate to see the 'wardrobe malfunction' on that one 🙄😂

[MarkUpnorth]

Number one, or do I mean number two? Regarding the hard stuff, not being able to go. Yes, I had that with essentially every number one med, so I gave up on the meds, and learned to stay close to a bathroom. Always have my GPS set to the next closest bathroom, and keep a mental note of the time it would take, in seconds to get there. If the time to arrival gets to large, priority is to find another. If I'm going to be in a place, where there is no chance of finding one within time of the bladder or bowel bells going off, I resort to from the simplest (pee bottle in the boat), to external catheter under my pants such as on the city lakefront, where the nearest outhouse is simply not reachable. Then, you really have to plan ahead. Simply not go there if it's been a while since your last bowel movement. No, you will not be able to coax one early. I've tried many, many times. But, for the most part, without dehydrating, that is a real thing: my good friend's partner who suffered with walking issues, and could not get to the bathroom from the bedroom at night, so to avoid having to go, she stopped drinking way too early. I thought it ironic, that she died from dehydration living in the desert, where unlimited water and drinks were only as far as the refrigerator in the next room. But, even without any cutting back, simply adjust your mental countdown timer (remember the GPS set on the next bathroom, with the time to arrival going in seconds). Never forget the GPS! Hmm... I can't remember a whole lot these days, but I can't ever forget that one!?!?

Regarding the more difficult issue, number two, even with the same m.s. issue, those nerves only working erratically, regular water soluble laxative, Magnesium, water soluble laxative, Magnesium, then Magnesium again at night for the restless legs. Every day, in addition to a diet high in fiber from fruits and veggies, and all the water soluble laxative and magnesium mega pills every morning, then double magnesium citrates at night (the latter controls the restless leg great too), it's still on an erratic schedule. On no meds now for years, I can expect to drop several pounds once a week. And yes, it will come on as quickly as the number 1 urgency, so don't ever turn off that GPS! When it does, just make sure the toilet you pick can handle it!!! Yes, that's disgusting if you're not using a great toilet. But it still works. Has for years. Every one of my toilets has a plunger, and there's a toilet rodder in the garage for when the plunger can't handle it. But if the toilet rodder is needed, it means I strayed from the plan, and wasn't eating enough veggies? Never any pain. When they do a colonoscopy, I'm told they could drive a semi through it. Nah, just joking. But I sould like to ask? Sometimes just have to fill the whole tract up to push it out the other end? But then, diarrhea like urgency, but with normal stools! At least it keeps moving? About once a week. Can you live with it? At least my gastro's seems to have accepted it, having used up all their med arsenals without coming to any better solution.

Oh, and you can as I have, dropped the water soluble laxatives and pumped up the natural fiber. So, either way, with the water soluble, or natural, the time is the same, erratically about once a week, give or take a few.

[Equitube in reply to MarkUpnorth]

I well know about that 'bathroom gps' My brain has a permanent map of every public restroom, alley, dark corner, and shops with potted plants around.

These days I have a conversion van and a bottle so don't have to frantically search. At nighttime, in an emergency, I'll just seek out a tree, bush, or even lonely streets. I try to be discrete but figure that there are probably few cops and fewer courts that would cite someone with legitimate health issues.

[MarkUpnorth in reply to Equitube]

Can I get an update for my GPS? Sounds like yours has more options!

[mrsmike9]

I read your first paragraph and thought, "Do not try this at home!" You should be a writer! You attack such a difficult subject with humor and skill. Good job and I am so glad you have an answer to the backyard problem!

[Equitube in reply to mrsmike9]

Thanks so much. I've always been a bit of a natural writer.

[mrsmike9 in reply to Equitube]

I wish I was. I had someone just this morning ask me if I wrote. I express myself but can't write it down fast enough. Perhaps if I had one of those things you could talk into at a computer I could be "a great American writer"! You definitely can!

[Equitube in reply to mrsmike9]

Well, if you have a smartphone then you indeed have "one of those things you could talk into at a computer"

On an Android there's a little microphone icon on the keyboard and Google's voice recognition is excellent. I talk so fast, overseas customer service agents often tell me that they can't understand me. Google has no problems.

[mrsmike9 in reply to Equitube]

But how could that get input I to a computer, then?

[Equitube in reply to mrsmike9]

Save it to a document (.txt, .doc, .rtf etc) then open it on your computer (there are many apps like pushbullet that let you wirelessly sync)

You could also create the document in Google docs or download the Windows app for your mobile.

Or, Microsoft's Cortana has pretty good speech recognition too. I don't have a lot of experience with her. I'm still trying not to use Bixby, Samsung's powerful, yet not Google equal assistant.

I've been into computers and tech for nearly 30 years and I'm continually amazed at how fast they can progress.

[mrsmike9 in reply to Equitube]

I will have to ask my son-in-law for directions of how to do this. He's in charge of the computers at a big company in town. I never thought of doing anything on my phone. I thought you had to buy those programs like Dragon Speak for computers. Very good thoughts! Thank you!

[Equitube in reply to mrsmike9]

Dragon was good software, but incredibly overpriced. Voice recognition has come so far since I was in college. We were thrilled if a program could answer a simple yes or no voice prompt (recall "I didn't understand that, can you please tear your hair out as you press 2 for Spanish...).

I can show anyone how to set up their entire phone,, computer, home, office and car to act on voice prompts that hopefully integrate together. That being said, it's still not perfect and unless you like fussing with things, it's better to keep it just at the phone. I've thought of developing a course 'for the rest of us'

A good start is to Google "ok Google commands" or siri or alexa or Bixby [I still hate the name of Samsungs entry, sounds like a dog. 'here Bixby"] (insert favorite digital assistant of the week here)

[mrsmike9 in reply to Equitube]

Hahaha!!! My son-in-law isn't nearly as funny as you are!

[Equitube in reply to mrsmike9]

He could be. You know:

"Comedy isn't always pretty" - Steve Martin

[Fattius]

I lmao while crying from ur familiar, yet revealing testimonial.😁😂 Don't mean to make light of your situation, I absolutely feel for u and only find humor in this bipolar, lopsided-ass disease. I hope everything has gotten manageable, at the very least.

[Equitube in reply to Fattius]

Thank you. I love writing humour and finding it in everyday life and especially dificult situations, Look for more from me as I feel inspired

[carolek572 CommunityAmbassador]

How did I miss this post, Equitube ? You have managed to make this serious subject very funny! Thank you

[Equitube in reply to carolek572]

Thank you