A multiple sclerosis war of the personal kind
I am trying to better appreciate my bladder, but it sure doesn’t make it easy.
By far, my most annoying MS symptoms are fatigue and the unruly behavior of my obnoxious bladder. Cognitive difficulties are high on the list too, but since my cognitively limited brain often forgets what I am forgetting, cognitive difficulties come in third.
The problem with the bladder and fatigue being my two most annoying symptoms is that I could handle one without the other. I could rest my fatigue away, but my bladder won’t let me! I could constantly empty my bladder a thousand times a day, but I get too tired to do so.
Please allow me to explain as delicately as possible. I, the lover of babies have changed hundreds of the worst diapers known to man; yet do not like talking about bladder/bowel stuff. Luckily, I only need to focus on the bladder here.
Fatigue is a constant battle, especially in the morning. If I absolutely have to wake up at a certain time, I need to come up with tricks to do so. Just setting my alarm clock doesn’t work. My tired brain has trained itself to shut off the alarm in my sleep.
“What’s that horrible sound?” my brain asks itself. “Oh, here it is, let’s get rid of that.”
This soliloquy goes on without my consent.
So I set my cell phone alarm as a backup, but to no avail. My brain has learned to turn that off in my sleep as well. Funny how my brain works brilliantly when I am asleep, but hardly at all when I’m awake.
When I need to wake at a particular time, I try to make this happen by setting both my alarm clock and my cell phone and then, placing my cell phone away from my sleeping body. Want to start my day early? The cell phone goes on the nightstand on the side of the bed I don’t sleep on.
Have an early doctor’s appointment? The cell phone goes on the dresser across the room- the logic being the further away I have to get from my sleeping position to shut the alarm off, the more awake I will be when I do it.
Need to catch a plane? That only happens once a year but as it’s a crucial reason to GET UP on time, the cell phone goes in an open dresser drawer. The trick being that I open all the drawers and have to sleepily find the one actually holding the cell phone.
Soon that won’t work either and I will have to hide my cell phone outside of my bedroom and who knows if I will even hear it then.
But the battle between fatigue and bladder take place on the days when I don’t have to get up at a certain time. Or, I do, but my tired brain has already shut off the alarms disturbing my sleep.
I could take all the rest I need, and boy do I need rest, but my bladder won’t allow it. The morning bladder alarm doesn’t fool around, the bladder alarms at 12 AM, 2 AM, 2 30 AM, 3 AM, 4 AM and 5 15 AM notwithstanding. My fatigued body just sleeps through those. One might ask how I know they happen if I am sleeping. The answer is that my fatigue is so pissed off about them, (pissed off- get it?) that it makes sure I remember how obnoxious all those interruptions were the next day.
But the 9 AM ish bladder run won’t quit. I try to ignore it as I lay comfortably resting. I realize I can’t ignore it so I start to move to address the issue. But in the process of moving, I find an even more comfortable resting position.
Slumber filled moments go by and the bladder grows more determined. My fatigue and my bladder begin to argue.
“Let’s the girl sleep! She’s tired. Why don’t you stop being a bully and leave her alone!” argues my fatigue.
“She has things to do, first being to take care of me! I’m important too you know. Why do you always get your boring tired way?” my bladder argues back.
One might try to defend my fatigue by saying when you need your rest, you should get your rest. But this fatigue/bladder diatribe often happens after 12, 13 plus hours of sleep.
One might defend my bladder by saying I’m just being lazy. The girl needs to get up and get moving. Except I WANT to get up and get moving. I don’t get bored easily and always, always have things I want to do. In the morning the first thing I really want to do is have my beloved cup of tea. Except I am so damn tired and when I’m not, I am in the bathroom.
Eventually the bladder wins this particular battle. Should fatigue try to lean me towards going back to bed, the bladder shouts again with another urgent message, only seconds after I have taken care of the first. And so it goes.
I’ve been told the bladder is a muscle and muscles are supposed to make you stronger. If stronger means getting up and moving if only from bed to potty and back again, then I should be grateful. I’m trying to be. But mostly I’m just pissed.
That is, when I’m not too tired.
Dear sleepless MS friends-please know that I do understand that I am lucky to be able to sleep, even if I am getting up constantly to pee. I know that many of my fellow MS’er’s have extreme trouble sleeping and for that I offer my condolences.
What can I say? Your MS is not my MS and your MS is weird.
January Contest-
So only one more contest left until next month’s release of MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis!
What do you think of the book cover image, posted to the right of this blog?
While it’s too late for the book itself, I’ve been thinking that the MS monster on the cover needs a name. Nothing cuddly or loveable, he is an atrocious beast after all. But something fitting that I may call him while I promote the book.
Do you agree? If so, this month’s contest asks you to come up with a name for him. The most creative, appropriate name for him wins a $10 Amazon gift card and an autographed copy of the book as soon as it’s released!
Please feel free to post your ideas in the comments section, on my Yvonne deSousa.com Facebook page (and please like it if you have not already done so,) or in a private message on my website. Be sure you are comfortable with giving up the name. I may ask you to sign something giving me permission to adopt your prize winning name to my MS monster.
Contest open until midnight on 1/23/14.
The winner will be announced in the 1/31/14 blog!
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Oh, I know that battle ALL TOO WELL. It sucks. I’ve actually stopped drinking by 4pm in an effort to avoid having to pee at night. It usually works, but of course I’m drinking tons during the day to make up for it and go to the bathroom about 80 times while at work. Yes, my coworkers think I’m weird.
So I’m with you: fatigue and bladder issues are my two most annoying symptoms as well!
Love your MS Monster image. FAR too tired to think of anything clever, but I’ll get back to you if inspiration strikes!
Thank you Ms. CrankyPants. Sorry that in addition to being in the same sucky MS club we are also in the same sucky bladder/fatigue club. It somehow makes the chess club in high school seem cool! I love your creativity just in your blog name alone, never mind your posts so yes, please let me know if you come up with anything!
The monster has a “so ugly it’s cute” way about it. Too bad that doesn’t apply to MS! I do however LOVE the cartoon rendition of you.
“So ugly it’s cute???” That’s how my family describes me! Seriously though, I never actually met the artist who did the cover so I’m not sure if he saw pictures of me on my website or just a coincidence that she has the same goofy look I do!
Love the cartoon…. How about Maurice for a name?…
how about Neil the nuisance?
seymor the symptom maker?
Great suggestions Serena- thank you!
Phineas the problem child?
cranky frank with the mean pranks?
too much time on my hands LOL
I have the bladder/sleep thing, too. When I have a good spell of health I just get up and pee and go back to bed without thinking about it and go back to sleep. When things are not so good and getting up feels impossible, I will wear a Depends. Not to gross anyone out, but there is such a relief and an ability to rest when I know I will not wet the bed. And, to tell you a secret, there is a great feeling that accompanies peeing into this diaper garment I never knew about (and obviously did not remember from my early childhood). I can only explain this as a freedom, a conquering, winning, and getting over on something that I was socially trained never to do- pee in my pants. And, during times when I am sick, down and out, this idea gives me a sense of personal power. In the darkness of my bed at night, my cats piled at my feet and my partner sleeping innocently next to me, I have done something that is so distasteful and no one knows. A big smile crosses my face. Don’t get me wrong. This is not the start of some fetish. You have to feel real bad to get the sense of what it means to feel better wetting your pants. I am a person who is hanging on. Hanging on, waiting to feel better. Tense in my sleep. Tense in my waking hours. Exhausted and tense. Wondering what else can I do to get past this frigging flareup. Knowing I am doing just about everything for the moment. So, just letting go and putting on the Depends is a triumph for me. I would say, “try it”, but I think it is a personal decision for anyone to make in his or her own time. It took me 20 years to decide to add Depends to me list of things that work for me when I am feeling like crap.
Thank you Janis for such an honest and very different perspective. I think we all fear, I know I do, the thought of having to rely on Depends. There are so many issues associated with that; that it means we are getting worse, getting older, losing control, the ick factor, etc. It is very helpful to hear of someone who made the decision in order to giver herself MORE control over her body. I think there is a secret reluctance to embrace tools that help us deal with MS as we feel that means we are letting MS win. For me, why on Earth won’t I just get the cane that would allow me to sit down when I am forced to stand in a long line and my legs are screaming at me to move or sit? I agree that it is a personal choice and you have to be ready to take the next step. But thank you so much for letting us in on the secret that sometimes the next step is exactly what frees us and doesn’t hold us back. What I love about writing an MS humor blog is that while we are learning to use humor to help us cope, we are also learning from each other!
God, I always wish I had that chair cane when I want to take a walk to a place where I know that I won’t find a place to sit and rest before returning home. Like, I am not far from Head of the Meadow Beach, but the walk would require me to sit several times before getting there and then several times on the way home. As soon as I can afford it, I’m getting that cane!! Thanks for reminding me.
I am pleased to hear that my post was helpful. I was afraid that it might be a turnoff to others but I am glad it was not.
It is a tricky subject but having all the info is crucial and a positive perspective can be nothing but good!
I’m chiming in at the end here. I was at the mercy of my bladder for many years. Knew it was a matter of time, but couldn’t get passed the anxiety to act before it was absolutely necessary. Eventually, it became mandatory for me to self-cath. It was a rough adjustment because of the anxiety and a lack of good training, but it ended up being a good thing and gave me a huge amount of freedom. The frequent urge to “go” usually means you are not emptying completely. When you CAN empty, it makes a world of difference in the time between bathroom visits and therefore where you can go and what you can do. No more up and down in the night or racing to find public bathrooms. I was truly traumatized by the idea but now wish I had done it much sooner. I’d be happy to discuss it further with either of you if you wish.
Hi Kerri- thank you so much for your input on this! I recently went to an MS event where a neurologist I love (she lives too far away for me to be her patient,) talked about advances in catheters. I was like you, immediately thinking “no way!” I have also seen the commercials talking about how it is much easier than it used to be. I know it is a possible solution and maybe one that I have to take up one of these days. I don’t cherish the thought but it is good to know that if it comes to that, it’s not as bad as I worry about. In the meantime, things have gotten a little better with a switch in medication. Now, instead of 20 bathroom runs, it’s only 5! Hahaha…… Luckily, I am a good sleeper so it doesn’t keep me up. That morning argument between getting up and not while the bladder screams away is still tricky though! So love that we can get advice from each other here and on other MS blogs. I will check yours out. Don’t be surprised if I don’t comment though. For some insane reason, word press gives me a hard time about commenting on other blogs by saying I am using my wrong wordpress ID. Totally annoying!
Glad you liked dome of the suggestions 😀
OOOPPP meants SOME
This blog is so funny, Thanks for the lift!!!! I to am up 4-5 x’/s a nite, oh joy right. teehee A long while ago the I got teased about I walked like Gore from Frankenstein. Bent over & dragging a leg. U could use that or I like Thor (from “The Babysitter” movie- 80’s) he prevailed against all. But Loved that blog
Great suggestions Diane! Thank you for entering the contest and for supporting my work!
Maybe set up a cot in your bathroom.
I’m so tired after reading about your sleepless nights, I need a nap!
It is so reassuring when people laugh at your misery.
Great post!
Don’t think I haven’t thought of it My Odd Sock. My bathroom is too small for an actual cot but many the nights where I have looked longingly and sleepily at the bathroom rug..