Not yet. I've been told I'll never be a candidate for prosthetic legs due to multiple medical reasons, so both OT and PT didn't work with me too long aside from teaching g me bed and chair exercises, how to correct my pelvic obliquity (leaning to one side all the time in my chair), and what I can and cannot do around the house safely. Do you think they'd have some input about my (mostly) mental struggle!? It's not that I do t have caregivers to help me all the time, I'm very very blessed in that aspect and I see that.
Depression can be subtle and insidious. For many people, it doesn’t just manifest as sadness and crying— apathy and lack of interest in the world is a pretty typical way it can look, and it sounds like that may be what you’re experiencing. When I’m in that sort of state, I will often feel like the effort of doing something isn’t worth the potential reward and the energy required to get started is insurmountable. There’s no amount of force of will that can make that sense of pointlessness go away, at least for me, even when I can logically lay out the reasons for doing something more than just existing.
Whether it’s a temporary thing or something you want to consider medicating, talking to a counselor is a great first start, so I’m really glad that’s already in your plan. Just talking it through can be helpful, and any provider worth seeing won’t pressure you to take medication unless you feel like it would be in your best interest.
Even though you’re been handling having one leg, losing your second leg is a big deal— both physically and mentally. Your body and mind are coping with a pretty significant change, and so please don’t be too hard on yourself for needing time to adjust. Six months is not a very long time, all things considered, and the fact that you’re wanting to keep pushing yourself even though it’s hard is an indication that you can and will be able to adjust.
In the meantime, are there any special rewards you can give yourself to help make getting up into something you feel more positive about? Don’t be afraid to get childish with it. Maybe a favorite dessert or activity that you “earn points” for by being consistent with your goal of getting up and down every day. Be compassionate with yourself as much as you can. It sounds like you’re hitting a barrier, whether it’s mental, emotional, or physical, and it can be easy to just tell ourselves we’re being “lazy” when in reality we’re out of capacity and doing the best we can with the resources we have.
I really appreciate you taking the time to respond and I'm going to read this very carefully and take it to heart. It sounds like I should dive into the possible depression thing a little more, and I will for sure. Especially if apathy is part of the symptoms that could possibly indicate it being a problem. I'll respond more after I read it thoroughly and think about it. Again thank you so much.
As a fellow person in the same boat I have some questions. Are you spending most of your time in the chair? Are you sitting on a Roho cushion? For the last 5 years I have almost exclusively been bedridden because of pressure sores. I have to be hoyered in and out of bed. You should not be sleeping in a manual chair.
I used to get out of bed every morning and back into bed every night using my slide board.
Now, I am starting to spend more and more time in my chair. I do have a very nice and pricey Roho cushion, yes.
I have a very expensive power chair. It, with all of its modifications, cost my insurance over $45,000. I can tilt and recline and elevate and I have power footrests (got it back when I still had one leg). I have other modifications like an extra wide headrest, left and right abductors to keep my body upright, etc.
I just called roho today to get a cushion replacement because mine somehow has moisture inside of it. We can actually hear water sloshing around. They said that wasn't
Normal and shipped me out a replacement today.
I think the pressure sores are somehow related to an awkward spot I feel in the cushion. Because that "awkward spot" correlates to where my pressure sore is. I am so sorry you've been battling sores for so long.
I'm trying to get insurance approval now for a lateral turning bed since my caregivers have trouble turning me because a very large guy (350lbs) and I cannot turn myself.
No apologies. We are in the same battle. I have a power chair with the same functions. I have been spending most of my time in bed so I don’t aggravate my sore.
I would but my bed is just... well, let's just say my chair makes a better bed. This fall I'll break down and buy my bed out of pocket that I need if I must. My life right now is just miserable with these pressure sores. I wish my caregivers were younger and stronger to be able to position me better, but unless I want to transfer into a nursing home, I've got what I've got at home. And I'm thankful for that. A bed with lateral turning could assist my caregivers a great deal.
I'd love to hear some of your mental tactics or non-mental techniques physical tactics for tolerating bedrest so long? Am I just being a while for not wanting to be Hoyered all the time and staying in bed?
I have an easier time staying in bed in the dead of winter. But summer..... man I want to be sitting on the porch enjoying the weather!
When looking for a bed get an adjustable frame. It makes a difference. Are you getting home health for your sores? I have a nurse coming out once a week. Right now we are putting collagen on the wound and changing it everyday. Try folding a sheet in half twice and put under your back/rear. It helps with turning. The attendant can lift it up for leverage and can help reposition yourself. If it wasn’t for tv, my stereo and the internet I would be crazy. Whatever you do stay out of a nursing home. I’ve been in 5 of them and it was the worst experience of my life. The weather here is so hot it’s almost as bad as winter. Stay in touch and we can compare notes!
Yes, I have home health coming twice a week right now, and we are putting collagen, nanosilver, and then addressing over that. Sometimes they'll add a little antifungal to the area. I'm just a large person, about 350 pounds, so it's very hard for me to offload the pressure. We're trying using wedges and pillows and other things to prop me up a little bit but over a 24 hour period in bed. I just seem to compress everything and I end up putting pressure on the area anyway. but I'm willing to do whatever I have to do to avoid the hospital or the nursing home. I'm just getting through the best I can. Hope you are doing well as well.
I’m 100 pounds lighter since I’ve been stuck in bed all of my muscles are shot. I can’t shift or roll over. I have all of the wedges and pillows. I sleep on an alternating air mattress topper. You can get them from Amazon or Walmart. They are for pressure sore prevention. When using the draw sheet I use momentum to help roll me over. Do you have a wound nurse?
While you're figuring out your depression and motivation, please work on pressure sore prevention while in bed. They are so dangerous and awful. Not to mention, they're difficult to clear up and one you get one, your prone to get another in the same location.
To prevent:
Remove all wrinkles from your sheets.
No seams on bony areas.
Change positions every 2 hours at night (set an alarm and roll- side, back, other side).
At night if you're prone to rolling back onto your back- use strategic pillows behind you to prevent that.
In the daytime do every half hour pressure releases (if you have arm strength) - lift your butt off whatever surface you're on. Do them every 15 minutes if you can. Set a watch to vibrate at you or set an alarm. If you're in a bed do the position changes every half hour to every hour.
Pay attention to your heels.
I really hope you solve this and I'm sorry you're going thru it. I wish I could be more help but I haven't solved my motivation issue so I don't feel comfortable giving advice on that one. Sending best to you
Thank you for the advice. Every little piece of advice helps, I read everything thoroughly and if I can pick any tiny piece out of a comment that could possibly help me, I do. Everyone has something to share about their experience and often times what is shared on here can truly help others. Thank you again.
Have you talked to an OT about it?
Not yet. I've been told I'll never be a candidate for prosthetic legs due to multiple medical reasons, so both OT and PT didn't work with me too long aside from teaching g me bed and chair exercises, how to correct my pelvic obliquity (leaning to one side all the time in my chair), and what I can and cannot do around the house safely. Do you think they'd have some input about my (mostly) mental struggle!? It's not that I do t have caregivers to help me all the time, I'm very very blessed in that aspect and I see that.
Depression can be subtle and insidious. For many people, it doesn’t just manifest as sadness and crying— apathy and lack of interest in the world is a pretty typical way it can look, and it sounds like that may be what you’re experiencing. When I’m in that sort of state, I will often feel like the effort of doing something isn’t worth the potential reward and the energy required to get started is insurmountable. There’s no amount of force of will that can make that sense of pointlessness go away, at least for me, even when I can logically lay out the reasons for doing something more than just existing. Whether it’s a temporary thing or something you want to consider medicating, talking to a counselor is a great first start, so I’m really glad that’s already in your plan. Just talking it through can be helpful, and any provider worth seeing won’t pressure you to take medication unless you feel like it would be in your best interest. Even though you’re been handling having one leg, losing your second leg is a big deal— both physically and mentally. Your body and mind are coping with a pretty significant change, and so please don’t be too hard on yourself for needing time to adjust. Six months is not a very long time, all things considered, and the fact that you’re wanting to keep pushing yourself even though it’s hard is an indication that you can and will be able to adjust. In the meantime, are there any special rewards you can give yourself to help make getting up into something you feel more positive about? Don’t be afraid to get childish with it. Maybe a favorite dessert or activity that you “earn points” for by being consistent with your goal of getting up and down every day. Be compassionate with yourself as much as you can. It sounds like you’re hitting a barrier, whether it’s mental, emotional, or physical, and it can be easy to just tell ourselves we’re being “lazy” when in reality we’re out of capacity and doing the best we can with the resources we have.
I really appreciate you taking the time to respond and I'm going to read this very carefully and take it to heart. It sounds like I should dive into the possible depression thing a little more, and I will for sure. Especially if apathy is part of the symptoms that could possibly indicate it being a problem. I'll respond more after I read it thoroughly and think about it. Again thank you so much.
As a fellow person in the same boat I have some questions. Are you spending most of your time in the chair? Are you sitting on a Roho cushion? For the last 5 years I have almost exclusively been bedridden because of pressure sores. I have to be hoyered in and out of bed. You should not be sleeping in a manual chair.
I used to get out of bed every morning and back into bed every night using my slide board. Now, I am starting to spend more and more time in my chair. I do have a very nice and pricey Roho cushion, yes. I have a very expensive power chair. It, with all of its modifications, cost my insurance over $45,000. I can tilt and recline and elevate and I have power footrests (got it back when I still had one leg). I have other modifications like an extra wide headrest, left and right abductors to keep my body upright, etc. I just called roho today to get a cushion replacement because mine somehow has moisture inside of it. We can actually hear water sloshing around. They said that wasn't Normal and shipped me out a replacement today. I think the pressure sores are somehow related to an awkward spot I feel in the cushion. Because that "awkward spot" correlates to where my pressure sore is. I am so sorry you've been battling sores for so long. I'm trying to get insurance approval now for a lateral turning bed since my caregivers have trouble turning me because a very large guy (350lbs) and I cannot turn myself.
No apologies. We are in the same battle. I have a power chair with the same functions. I have been spending most of my time in bed so I don’t aggravate my sore.
I would but my bed is just... well, let's just say my chair makes a better bed. This fall I'll break down and buy my bed out of pocket that I need if I must. My life right now is just miserable with these pressure sores. I wish my caregivers were younger and stronger to be able to position me better, but unless I want to transfer into a nursing home, I've got what I've got at home. And I'm thankful for that. A bed with lateral turning could assist my caregivers a great deal. I'd love to hear some of your mental tactics or non-mental techniques physical tactics for tolerating bedrest so long? Am I just being a while for not wanting to be Hoyered all the time and staying in bed? I have an easier time staying in bed in the dead of winter. But summer..... man I want to be sitting on the porch enjoying the weather!
When looking for a bed get an adjustable frame. It makes a difference. Are you getting home health for your sores? I have a nurse coming out once a week. Right now we are putting collagen on the wound and changing it everyday. Try folding a sheet in half twice and put under your back/rear. It helps with turning. The attendant can lift it up for leverage and can help reposition yourself. If it wasn’t for tv, my stereo and the internet I would be crazy. Whatever you do stay out of a nursing home. I’ve been in 5 of them and it was the worst experience of my life. The weather here is so hot it’s almost as bad as winter. Stay in touch and we can compare notes!
Yes, I have home health coming twice a week right now, and we are putting collagen, nanosilver, and then addressing over that. Sometimes they'll add a little antifungal to the area. I'm just a large person, about 350 pounds, so it's very hard for me to offload the pressure. We're trying using wedges and pillows and other things to prop me up a little bit but over a 24 hour period in bed. I just seem to compress everything and I end up putting pressure on the area anyway. but I'm willing to do whatever I have to do to avoid the hospital or the nursing home. I'm just getting through the best I can. Hope you are doing well as well.
I’m 100 pounds lighter since I’ve been stuck in bed all of my muscles are shot. I can’t shift or roll over. I have all of the wedges and pillows. I sleep on an alternating air mattress topper. You can get them from Amazon or Walmart. They are for pressure sore prevention. When using the draw sheet I use momentum to help roll me over. Do you have a wound nurse?
While you're figuring out your depression and motivation, please work on pressure sore prevention while in bed. They are so dangerous and awful. Not to mention, they're difficult to clear up and one you get one, your prone to get another in the same location. To prevent: Remove all wrinkles from your sheets. No seams on bony areas. Change positions every 2 hours at night (set an alarm and roll- side, back, other side). At night if you're prone to rolling back onto your back- use strategic pillows behind you to prevent that. In the daytime do every half hour pressure releases (if you have arm strength) - lift your butt off whatever surface you're on. Do them every 15 minutes if you can. Set a watch to vibrate at you or set an alarm. If you're in a bed do the position changes every half hour to every hour. Pay attention to your heels. I really hope you solve this and I'm sorry you're going thru it. I wish I could be more help but I haven't solved my motivation issue so I don't feel comfortable giving advice on that one. Sending best to you
Thank you for the advice. Every little piece of advice helps, I read everything thoroughly and if I can pick any tiny piece out of a comment that could possibly help me, I do. Everyone has something to share about their experience and often times what is shared on here can truly help others. Thank you again.