Sometimes I don’t wanna go to sleep because I’m afraid that when I wake up, whichever of my caregivers who is supposed to be there to help me isn’t going to be there. This happens more often than I would like. It’s unavoidable. People have lives. Things go wrong in the lives of my caregivers that are unforeseen and unintended and have nothing to do with me. But they affect me.
These things that are unforeseen that go wrong in other peoples lives affect me directly and sometimes in ways that feel tragic at the time.
I know in my head they’re not tragic. They just feel that way at the time – I’m going to survive whatever it is that happens, whether that be I’m stuck in my bed chair until 2 o’clock in the afternoon. Or whether it means the worst happens and I end up shitting myself. I will survive that. That’s my life now. Shitting myself hasn’t happened yet. That word haunts me yet. Yet.
I remember reading the book by John DuFresne (one of my favorite authors) it was called, Louisiana Power & Light. Quote from the book said something like, “Some some days I wake up in the morning, and I don’t have a toothache and that feels like enough. Other times I wake up in the morning and I wish I had more wisdom than the day before.” I’m not getting that quote exactly right bye that’s exactly how I feel. But that’s exactly how I feel. Some days I wish I could wake up with more wisdom than I had the day before. With an appreciation for the things that I can do instead of the resentment, I feel for all the things that I can’t do anymore.
The problem is, I’ve always been a person who solves problems. I’ve always been a person that takes control and knows how to fix things that are broken. I’ve always been a person who knows how to solve the unsolvable problems. But I’ve also always been a person who suffers from an inability to deal with things that are unbelievably simple. my husband, bless his heart, used to call me the the dumbest, smart person had ever met.
He said I could make the most simple things impossibly complicated and the most complicated things impossibly simple. He was so right and could see me in a way that I could never see myself. I resented the shit out of him for that -for being able to see what I couldn’t see. I think it’s what made me so good my job. When I had a job that is. An impossibly complicated job that I was extremely good at.
Now I rely on strangers for my most basic life necessities they inevitably become almost like family, but different than family because they’re paid to help me. They’re paid, not enough money to make me a priority. The priority that I want to be. Which makes me feel impossibly ungrateful for the fact that anybody’s going to help me at all.
Sometimes relying on strangers who become more like family but family that gets paid to do a job feels like an impossible way to live.
Sometimes I go to bed at night wishing that I wouldn’t wake up the next morning. It feels some possibly ungrateful for somebody so blessed. There’s that word again. The word that I always hate so much. Blessed. My caregivers often me how blessed I am compared to other patients that they take care of. And yet sometimes I just don’t feel blessed. I feel angry. I feel angry at all that I’ve lost. Which makes it really difficult to see all of what I may have also gained.
Sometimes when I go to bed I wish that I wouldn’t wake up in the morning and then I do wake up in the morning, I’m really sad. ButI have to act like I’m not. Because there’s somebody walking in my room to help me. They’re there to help me get out of my bed. They’re here to help me do the most basic things that I used to be able to do myself. And I have to act happy to see them. And I am happy to see them. Genuinely happy. at the same time I resent the fuck out of everything about the situation by extension the people themselves. This is completely unfair and I know it. It doesn’t make the resentment any less real.
It probably doesn’t make any sense, but sometimes getting the voices of my caregivers out of my head is the only thing that gets me to sleep at night.
My mouth is dry I want to guzzle this bottle of water in front of me which I cannot do because my catheter bag will fill up way too quickly and wake me up early in the morning with a feeling of panic that I have to empty it immediately.
I have to find a way different way to go to sleep. I have to find a way to not be afraid when I wake up. To not to wake up panicking but to know that I can empty my catheter bag myself. That I will be OK.
I’m somehow always OK.
I don’t know why this is so difficult for me to understand. Why I feel like I keep writing the same post over and over and over again. I’m not really writing I’m speaking. And when I speak, I don’t make as much sense as when I write. When I read this over tomorrow and I try to edit I won’t even know where to begin.
There’s a part of me that just wants to post thisjust the way it is. Just the way I’ve spoken it. And know that it won’t be nearly as eloquent or as well thought out as anything I’ve written before.
But it’s what’s in my heart. It’s what’s in my head. It’s the things that help people relate to me when I don’t think I’m relatable at all. I try really hard to make these ramblings make sense, and I know they often do not.
But I may post this anyway just is. I guess what I meant to say is just as it is. That’s exactly what I mean about speaking instead of writing. I don’t often get my words out in the right order. I often don’t get the right words out – the words that will make perfect sense to me, which makes me think they won’t make sense to anybody else. My voice is starting to get slurred because my mouth is starting to be impossibly dry. I keep speaking. But it’s like I don’t get these thoughts out of my head I won’t be able to sleep even though I’m possibly tired. I feel impossibly tired from merely existing.
Obviously, I continue to have a flare for the dramatic. That seems to be something that never changes about me. Everything always feels impossibly terrible. Or impossibly joyful. There’s never anything in between. Existence is impossible for me. I always feel everything so extremely. I just want to be able to exist without the extremes.
I guess that’s why therapy is so critical in my life. The therapy takes commitment and therapy takes time and I don’t feel like I have either.
My wonderful therapist often reminds me that I’ve made so much progress already. That I dedicate myself to “the work“ with incredible vigor and incredible commitment. But I want it to be faster. I just want somebody to tell me how to be better. I just want somebody to make me better.
I’m about to go to sleep and I can feel a spasm starting in my left foot. It’s not actually in my foot but in my calf though, the result will be to that it will make my foot twist into an impossible shape. See? I use the word impossible way too frequently.
I know that these spasms won’t last very long. In the old days I used to think a spasm like that would never end and I would just have to live with that pain. Now I know better and I just tell myself it’s going to go away. And it’s going to stop. And it does. I just don’t know why knowing that doesn’t make it any better.
I don’t know why these ramblings help me. I don’t think I’ll be able to help anybody else. Because they’re so disjointed. They’re so not clear. They are just mindless ramblings.
I can’t imagine they can help anybody but me. Which is the whole point of writing in the first place. To help myself but to also help others. We’ll see how I feel about this tomorrow morning when I wake up in a panic as I wake up in a panic every morning
I’ll probably just post it anyway. And hope that you’ll understand. I hope that you’ll understand, dear readers, that sometimes this is all I have in me.
I just hope you’ll understand that getting these thoughts out of me is sometimes the only way I can get to sleep. Sometimes getting these thoughts out is the only thing that keeps me even a little bit sane.
It’s time for me to go to sleep. I guess I should. Thank you for reading because I’m sure this doesn’t make any sense at all. But like I said, we’ll see how I feel about it tomorrow. If this ever gets posted at all.
I often wonder if I’ll ever get used to this brand new time in my life where eloquence escapes me. But what’s in my heart needs to come out somehow. This might be the only way to do it.
Good night dear readers. Thank you for hanging in there with me. Thanks for not giving up on me. Even when my writing isn’t what it used to be.
Even when I’m not what I used to be. Even when I’m not what I want to be. I hope life is treating you kindly and gently. And you get to go to sleep at night not being afraid. That’s my wish for you and my wish for me.
That’s the end of this edition of mindless ramblings from Bethy Bright and Dark.
The end.
Or maybe it’s a new beginning. You be the judge.
Robin W LeTourneau
January 16, 2024 12:04 amI want to say something comforting, something meaningful, but none of my words would convey the idea in my heart. I wish I could make something – anything – better for you. But obviously, that is not within my power. I wish you strength and peace.
Bethy
January 16, 2024 12:29 amI’ll take both. And they’re both comforting and meaningful to me, so there. 😉
Kimberly Turner
January 16, 2024 5:40 amHi there,
Sadly I do understand every word in this post. Thank you for having the kahunas to put it out there.
The fear is real. The internal drama of it is real even if others don’t understand.
I can always count on you to be real about the disease you and I share because most everyone else tries to sugar coat it. I know the reality, I’m very slowly losing functions that I happen to like how they used to be!
Thank you for keeping it real.
Xoxo
Kimberly
Diane L Blocker
January 16, 2024 9:06 pmSo glad to see your posting again. I don’t know why you and my daughter have these awful disease, but I want you to know that I have not forgotten you and continue to pray for peace and clarity for you as you continue to survive and live this good/hard life. Thinking of you from Alabama.
Anne Cayer
January 16, 2024 9:40 pmBeth – you speak your heart & that’s what’s important to me and, I think, most if not all of us who follow you.
Your MS progression has been faster than mine. And we share many of the same fears and hopes.
I find it so difficult to ask for the help I need, to try to stay positive & to keep from falling into a depression where my life doesn’t feel like it’s valuable or meaningful.
Yet, like you, I wake up each morning & try to be positive about the day to come (except on the days when I wake up crying & can’t stop). Every day I wake up not crying is a good day & the good days outnumber the bad.
You’re very courageous to share your innermost thoughts & feelings. Your sharing helps me to look at my “dark” side as well as the “bright” side.
Thanks for all you do. Sending you a big hug. ❤️
Kristin
January 25, 2024 3:09 pmOh wow, so much to unpack here. You’re pouring out not just your feelings but this horrible situation that MS has trapped you in. Then in the next sentence, you immediately dismiss everything that you just said. And that is all kinds of wrong. What you’re feeling is valid. What you’re going through is real and traumatic and horrible. The caregivers (healthy, of course) who have the unmitigated gall to tell you that you are blessed (blessed? Seriously?) deserve to be smacked upside the head. I wonder if they would still feel that way if they’d had the experience of sitting in a pile of their own mess because they’re unable to get to the commode, or sitting there for hours with the tongue as dry as paper because they’re afraid to drink. Telling you that you are blessed is BS that stinks to high heaven. For healthy person to deliver that steaming mess is even worse.
Don’t listen to their voices and don’t listen to your own. Stop invalidating your feelings. What you’re going through is traumatic and real. That’s what you would say to a friend telling you about it and that’s what you should say to yourself. It’s real. It’s valid. It’s horrid and you have every right to feel that way (I can say that because much of what you are going through is what I lived through on a regular basis).
What is not valid is for you to be ghosted by your caregivers. Yes, caregivers have lives but – and this is a crucial but – caregiver agencies do not. They are supposed to have on-call and backup systems in place. If the caregiver can’t make it, the job of the agency is to make sure that someone is there to take care of patients. Sitting in a chair for an extra six hours can lead to pressure sores, which can lead to sepsis and death. Sitting in your own mess can lead to UTIs, skin breakdown and pressure sores, which brings us back to sepsis. This is no small thing we are talking about. They make a commitment when they take you on as a client, and they need to have a framework in place to keep to that.
As far as the dry mouth, it’s the worst sort of torture. Prof. G over at MS Selfie just put up a post on the use of dehydration to manage bladder symptoms in MS patients (predictably, he disapproves – as do all healthy people who have never lived through accidents). Notably, however, he mentions DDAVP (Desmotabs or Desmospray), a medication/hormone that slows the rate at which your kidneys process fluid into the bladder. It can be used overnight to prevent filling your bag so quickly (I would think they would have oversized bags for overnight). Talk to your neurologist about it.
As far as my solutions for dry mouth (because you know I can’t help myself):
• Keep some Icebreakers Sours on hand. They are sugar free and will banish dry mouth instantly.
• The rate at which you consume liquid partially governs how rapidly it gets to your bladder (there are other factors like when your stomach is empty, etc.). Try taking a small sip, swish it around your mouth, then let only minuscule amounts go down your throat over 20 or 30 seconds or so. Wait another 15 minutes or so and do it again. No, it’s not the giant swing you’re craving but it addresses the worst of it. Chapstick helps at the same time.
• In that vein, liquid that gets in your system through food reaches the bladder much more slowly than straight up fluids. It’s not a great solution but a bowl of grapes or apple slices can go a long way toward relieving dehydration without boosting your throughput too much. You will need a bottle of water in a cup so you can rinse afterward, of course.
• Biotene is your friend. It’s a mouth rinse for dry mouth at It helps for 2 to 3 hours. You can use it as a rinse after brushing your teeth. They have a spray bottle, if your hands work well enough. Alternatively, use a small bottle with eyedropper to add just a little bit to your mouth (it is not for consumption).
Anyway, not to meet that poor dead horse again but what you’re going through is real. What you’re feeling is real. Please don’t try to negate those feelings. Only by inhabiting them can you go through them and cope with the trauma. Only by accepting them can you establish a disaster plan to address them.
MS sucks. People suck, at least many of them do. You, however, do not. Please remind yourself of that.
Hugs,
K
Kristin Hardy
January 27, 2024 6:38 pmOh wow, so much to unpack here. You’re in an impossible situation and the emotions it evokes are real and true. Please stop invalidating them. I can’t believe your caregivers (healthy, of course) have had the effrontery to suggest that you are blessed (Blessed? Seriously?) compared to their other clients. So, what, are there scorecards now? They have no right to invalidate your experiences. I wonder how they feel if they’d had a mess sitting in their chair simply because making the transfer, let alone dealing with clothing, is impossible. I wonder how blessed they would feel sitting for hours with the tongue as dry as paper because one precious swallow of water might be too much. Telling you that you are blessed is BS that stinks to high heaven. For a healthy person to deliver that steaming mess is even worse.
You’re in a situation where just getting through the day forces you to trust people who have demonstrated they can’t be trusted, either with your emotional well-being or your physical health. And that is all kinds of wrong. You’ve entered into a contract with them that a caregiver will be there to provide critical and time-sensitive services. This isn’t the part where you suck it up and are understanding. Yes, caregivers have lives but – and this is a crucial but – caregiver agencies do not. They are supposed to have on-call and backup systems in place. If the caregiver can’t make it, the job of the agency is to make sure that someone is there to take care of patients. Sitting in a chair for an extra six hours can lead to pressure sores, which can lead to sepsis and death. Sitting in your own mess can lead to UTIs, skin breakdown and pressure sores, which brings us back to sepsis. This is no small thing we are talking about. They make a commitment when they take you on as a client, and they need to have a framework in place to keep to that.
Your reactions and responses are completely appropriate to the situation. Anyone who says they are not has no understanding of what it is like to be truly disabled. My guess is that’s what you would tell a good friend in the situation – and that’s what a good friend would say to you.
MS sucks. People suck, at least many of them do. You, however, do not. Please remind yourself of that.
Hugs,
K
(Sorry if I am speaking too strongly – it’s just hard to read your descriptions of what you’re going through and them see you immediately try to excuse the people who are part of creating that situation)
Kristin Hardy
January 27, 2024 6:45 pmAs far as the dry mouth, it’s the worst sort of torture. Prof. G over at MS Selfie just put up a post on the use of dehydration to manage bladder symptoms in MS patients (predictably, he disapproves – as do all healthy people who have never lived through accidents). Notably, however, he mentions DDAVP (Desmotabs or Desmospray), a medication/hormone that slows the rate at which your kidneys process fluid into the bladder. It can be used overnight to prevent filling your bag so quickly (I would think they would have oversized bags for overnight). Talk to your neurologist about it.
As far as my solutions for dry mouth (because you know I can’t help myself):
• Keep some Icebreakers Sours on hand. They are sugar free and will banish dry mouth instantly.
• The rate at which you consume liquid partially governs how rapidly it gets to your bladder (there are other factors like when your stomach is empty, etc.). Try taking a small sip, swish it around your mouth, then let only minuscule amounts go down your throat over 20 or 30 seconds or so. Wait another 15 minutes or so and do it again. No, it’s not the giant swing you’re craving but it addresses the worst of it. Chapstick helps at the same time.
• In that vein, liquid that gets in your system through food reaches the bladder much more slowly than straight up fluids. It’s not a great solution but a bowl of grapes or apple slices can go a long way toward relieving dehydration without boosting your throughput too much. You will need a bottle of water in a cup so you can rinse afterward, of course.
• Biotene is your friend. It’s a mouth rinse for dry mouth at It helps for 2 to 3 hours. You can use it as a rinse after brushing your teeth. They have a spray bottle, if your hands work well enough. Alternatively, use a small bottle with eyedropper to add just a little bit to your mouth (it is not for consumption).
I always envied you folks with suprapubic catheter’s a little bit, precisely because I thought you could drink more freely. Now I know. Somebody should invent an oversized bag to use for overnights. This just adds to my firmly held beliefs of people who make products for the disabled have zero understanding of what it’s like to live with disability.
Take care,
K