If you’ve been following me for a while (totally ok if you haven’t) you know that I can contain both light and darkness at the same time — and I think it’s healthy to do so. I also don’t like gratitude practices that don’t acknowledge the suckiness of it all.
So, my question for you today, dear reader, is:
What’s one thing that sucks right now and one thing you’re grateful for?
I think it sucks to be 99% bedbound, it sucks everyday, and it’s hard to get through each day. And I’m grateful that I have finally found a good doctor/GP who has allowed me to test out B12 shots. So far it’s promising.
Today I’m grateful for the community I’m building on here! It’s helping me step away from more toxic social media channels that haven’t been serving me. I want to build relationships as that’s sooo important when you’re bedbound and chronically ill. I’ve built some wonderful ones in other places but there’s also a LOT of trolling and negativity. This place has been a breath of fresh air and filled with supportive people who “get it”, fun photos, wonderful whimsical writing and so much more. It feels like hope.
The thing that sucked today was my GI system went completely haywire. It’s haywire MOST days but today it decided to be “extra”. It’s very challenging for me to get to and from the bathroom as I am flat in bed most of the time. When I have to go 30+ times it zaps me of ALL my energy. It’s also why I’m awake at 5am when I should be sleeping.
Oh yay, so glad you’re finding community and friendships on Substack! Oh no, GI issues! And going to the bathroom when bedridden is so taxing and doing it so many times a day is aweful. (I woke up last night with GI issues (it happens often) and it kept me awake.)
Same here with the GI issues and it’s miserable. My OT keeps trying to convince me to get a bedside commode but I’m really struggling with what that will mean for my mental state. I know that’s silly… but having to look at a toilet all day long from bed does NOT sound appealing to me. Plus I don’t have full time care so I don’t know how often it would be emptied. Thus I drag myself to and fro… and today I’m paying for it!
To be completely honest - this disease and the fact that research is going round in circles and I’m probably too old now to benefit from any treatments that might come along because I’ll be flipping old and falling apart from age too. So I won’t ever benefit from anything that is developed given the time it takes for that sort of thing to happen. (My GP allowed me one shot of B12 and no more - pure lip service - I hope it’s good for you)
I’m ever grateful for my husband who is encouraging me to look at off road powered mobility devices so I can join him on walks as that’s the main thing I miss doing with him.
I sooooooo hear you on this one! Research is way too slow and not getting anywhere right now. I really hope you find an off road powered mobility device, it sound like it could make your life a tad more interesting 🌸❤️
It sucks to be climbing further and further into credit card debt due to being disabled. But I’m grateful and lucky to be receiving disability benefits so I can at least eat. I just keep thinking, I’ve climbed out of debt before, and I’ll do it again someday.
Oh no so sorry to hear that. Personal finances and how chronic illness/disability affects this is something we don’t talk enough about. Thank you for bringin it up, although it’a such a difficult situation (I’ve been there). I’m glad you’re getting benefits! And I hope the situation stabilises so you can slowly begin moving out of dept one day.
It sucks that I can't get out to the photography that I love so much, but I'm grateful that I'm starting to have some slightly better days, and have even got out the house this week and seen some friends face to face.
Woke up for mid morning to go to the bathroom and found my urine is dark red. That sucks. After 6 months of treating kidney stones that were removed 6 weeks ago I have been feeling great. Body functioning better than it has in years. Today in 5 hours I have an appointment with the urologist to get a final evaluation. I’m grateful for that. I’m also thankful I have Hagen Daz chocolate ice cream and A&W root beer soda in the fridge.
I’m going to make me a float. This is my first contact with you Madelleine. So glad you were in my emails this morning. Glad to have a place to share. Hubbys been sleeping, don’t want to wake him up That also sucks 49 years of marriage and I do not disturb. That sucks.
Yikes, dark red urine! That and kidney stones sounds too painful. Oooh yeah ice cream float! That would make my day too! I get homemade oat milk ice cream with melted chocolate each afternoon — best time of day! So grateful for that. I hope you and hubby get to spend some quality time together today — when he wakes up.
I’m grateful for the support of my family and friends through a tragic few months. My 17 yo nephew passed away in May and on Monday September 2nd we buried him. On autopilot for 3 months, our family of 4 has coped in their own way. My husband suffered with depression, I have relapsed into daily dinking. My daughter has worked tirelessly to save for University and my son has sought refuge amongst his friends. I’m grateful to be able to talk to all 3 of them about coping in their own unique way. Further work has to be done, yet I am thankful we have been there for everyone.
I’m so deeply sorry for your loss and your husband’s depression. That’s a lot of grief to deal with and contain (for both of you). I’m glad to hear your family is supportive of each other through this incredibly difficult time. Much love and support and care to you 🌸
I hope it's ok to post as a caregiver Madelleine, since I feel connected & part of your community.
It sucks tracking time by appointments, calls and results to make the dominoes line up and connect in the absence of anyone else seeing the big picture for us. Sucks to, realise we moved from Spring to Autumn (not defined by weather but scans/tests/interventions) and everyone else is 're-energised' by holidays and that I still need the next scan to see where and how the next row of dominoes slot together (incl a few days respite).
BUT still, I'm SO grateful to live in & appreciate the small boring quiet moments compared to eggshell constant crises (that was 2019/20). I can appreciate and feel blessed AND feel alone and frustrated AND feel connected via carer online forums and the Carer Mentor community.
You are ALWAYS welcome to post and comment here — always! Caregivers and allies are equally as welcome. Wow, sounds like a huge responsibility and job. And I so understand the ‘in the absence of anyone else seeing the big picture’. And yes, some stability can be total bliss!
I knew you'd probably say that. I just wanted to be sure and respect the space/community you're fostering here. THANKS!
Yes a VERY big responsibility and a never ending litany of 'to-dos' on my list. Thankfully, I don't see it as a job, it's tough as you say mainly because it's so much about heart and love;- how I see true - care.
Today I’m grateful for the community I’m building on here! It’s helping me step away from more toxic social media channels that haven’t been serving me. I want to build relationships as that’s sooo important when you’re bedbound and chronically ill. I’ve built some wonderful ones in other places but there’s also a LOT of trolling and negativity. This place has been a breath of fresh air and filled with supportive people who “get it”, fun photos, wonderful whimsical writing and so much more. It feels like hope.
The thing that sucked today was my GI system went completely haywire. It’s haywire MOST days but today it decided to be “extra”. It’s very challenging for me to get to and from the bathroom as I am flat in bed most of the time. When I have to go 30+ times it zaps me of ALL my energy. It’s also why I’m awake at 5am when I should be sleeping.
Hope you’ve got some awesome in your day today!
Oh yay, so glad you’re finding community and friendships on Substack! Oh no, GI issues! And going to the bathroom when bedridden is so taxing and doing it so many times a day is aweful. (I woke up last night with GI issues (it happens often) and it kept me awake.)
Same here with the GI issues and it’s miserable. My OT keeps trying to convince me to get a bedside commode but I’m really struggling with what that will mean for my mental state. I know that’s silly… but having to look at a toilet all day long from bed does NOT sound appealing to me. Plus I don’t have full time care so I don’t know how often it would be emptied. Thus I drag myself to and fro… and today I’m paying for it!
To be completely honest - this disease and the fact that research is going round in circles and I’m probably too old now to benefit from any treatments that might come along because I’ll be flipping old and falling apart from age too. So I won’t ever benefit from anything that is developed given the time it takes for that sort of thing to happen. (My GP allowed me one shot of B12 and no more - pure lip service - I hope it’s good for you)
I’m ever grateful for my husband who is encouraging me to look at off road powered mobility devices so I can join him on walks as that’s the main thing I miss doing with him.
I sooooooo hear you on this one! Research is way too slow and not getting anywhere right now. I really hope you find an off road powered mobility device, it sound like it could make your life a tad more interesting 🌸❤️
It sucks to be climbing further and further into credit card debt due to being disabled. But I’m grateful and lucky to be receiving disability benefits so I can at least eat. I just keep thinking, I’ve climbed out of debt before, and I’ll do it again someday.
Oh no so sorry to hear that. Personal finances and how chronic illness/disability affects this is something we don’t talk enough about. Thank you for bringin it up, although it’a such a difficult situation (I’ve been there). I’m glad you’re getting benefits! And I hope the situation stabilises so you can slowly begin moving out of dept one day.
It sucks that I can't get out to the photography that I love so much, but I'm grateful that I'm starting to have some slightly better days, and have even got out the house this week and seen some friends face to face.
Oh wow, face to face friends! Am so glad to hear you’ve been having better days. It always sucks when we can’t live our creative passions — so much.
I know! I've felt genuinely excited this week that I've got out the house and talked to people. Need some serious rest now though ... 🥱
Aging sucks. And our systems are broke, especially the medical system. I’m grateful I have access to it.
Aging really does suck, especially with these ill bodies…
Woke up for mid morning to go to the bathroom and found my urine is dark red. That sucks. After 6 months of treating kidney stones that were removed 6 weeks ago I have been feeling great. Body functioning better than it has in years. Today in 5 hours I have an appointment with the urologist to get a final evaluation. I’m grateful for that. I’m also thankful I have Hagen Daz chocolate ice cream and A&W root beer soda in the fridge.
I’m going to make me a float. This is my first contact with you Madelleine. So glad you were in my emails this morning. Glad to have a place to share. Hubbys been sleeping, don’t want to wake him up That also sucks 49 years of marriage and I do not disturb. That sucks.
Yikes, dark red urine! That and kidney stones sounds too painful. Oooh yeah ice cream float! That would make my day too! I get homemade oat milk ice cream with melted chocolate each afternoon — best time of day! So grateful for that. I hope you and hubby get to spend some quality time together today — when he wakes up.
I’m grateful for the support of my family and friends through a tragic few months. My 17 yo nephew passed away in May and on Monday September 2nd we buried him. On autopilot for 3 months, our family of 4 has coped in their own way. My husband suffered with depression, I have relapsed into daily dinking. My daughter has worked tirelessly to save for University and my son has sought refuge amongst his friends. I’m grateful to be able to talk to all 3 of them about coping in their own unique way. Further work has to be done, yet I am thankful we have been there for everyone.
I’m so deeply sorry for your loss and your husband’s depression. That’s a lot of grief to deal with and contain (for both of you). I’m glad to hear your family is supportive of each other through this incredibly difficult time. Much love and support and care to you 🌸
BIG hugs and heartfelt condolences Kirsty. I've no words for such a tragic loss. I'll just sit here alongside you. xo
I hope it's ok to post as a caregiver Madelleine, since I feel connected & part of your community.
It sucks tracking time by appointments, calls and results to make the dominoes line up and connect in the absence of anyone else seeing the big picture for us. Sucks to, realise we moved from Spring to Autumn (not defined by weather but scans/tests/interventions) and everyone else is 're-energised' by holidays and that I still need the next scan to see where and how the next row of dominoes slot together (incl a few days respite).
BUT still, I'm SO grateful to live in & appreciate the small boring quiet moments compared to eggshell constant crises (that was 2019/20). I can appreciate and feel blessed AND feel alone and frustrated AND feel connected via carer online forums and the Carer Mentor community.
Being human is SO paradoxical.
You are ALWAYS welcome to post and comment here — always! Caregivers and allies are equally as welcome. Wow, sounds like a huge responsibility and job. And I so understand the ‘in the absence of anyone else seeing the big picture’. And yes, some stability can be total bliss!
I knew you'd probably say that. I just wanted to be sure and respect the space/community you're fostering here. THANKS!
Yes a VERY big responsibility and a never ending litany of 'to-dos' on my list. Thankfully, I don't see it as a job, it's tough as you say mainly because it's so much about heart and love;- how I see true - care.
Thanks, Madelleine xo
It sucks that the medication my psychiatrist prescribed has had long-lasting side effects but I’m grateful for my primary care physician.
Oh no! Long lasting side effects really really sucks! I’m so sorry you’re dealing with that. I’m glad you have a good primary care physician 🌸
Thank you.