bensmith
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This is Ben's mom, can you help me see what to do.
This is Ben's mom what should we do.
- Thread starter bensmith
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Mary
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Hi Ben's mom - it would be really helpful if you could be more specific - what exactly do you want help with?
People here have issues with pain and sleep and energy, their immune systems, etc. etc. etc., lots of different things. It think it would good to start with one thing and ask about that.
Also, it might be best if you opened your own account here. That way if people send you, replies and messages, they will go straight to you and not to your son.
Judee
Psalm 46:1-3
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Hi, Ben's Mom,
Yeah, Ben was on here the other day. Did he tell you what he has been experiencing? It didn't sound all that great, poor guy. This is such a tough thing to go through. He did answer us back. You can tell him I do think what I suggested may be part of the issue on what he is going through. I think he can use that link I posted to look at the symptoms. Plus, he may be able to message others there who are going through the same thing. (They have a discussion group link under one of the tabs. Maybe that way he could determine if this is really what is happening to him.
Hang in there and please keep us informed on how he is doing. If he's okay with you doing so, please give him a hug from us. Take care of yourself too. It can be rough being a caregiver sometimes.
>>>sending a hug for you too.
Yeah, Ben was on here the other day. Did he tell you what he has been experiencing? It didn't sound all that great, poor guy. This is such a tough thing to go through. He did answer us back. You can tell him I do think what I suggested may be part of the issue on what he is going through. I think he can use that link I posted to look at the symptoms. Plus, he may be able to message others there who are going through the same thing. (They have a discussion group link under one of the tabs. Maybe that way he could determine if this is really what is happening to him.
Hang in there and please keep us informed on how he is doing. If he's okay with you doing so, please give him a hug from us. Take care of yourself too. It can be rough being a caregiver sometimes.
>>>sending a hug for you too.
bensmith
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It's me, thanks for reaching out. Trying to get my mom up to speed on practice. She wanted to take me to hospital and possibly get psych doctors involved. I'm getting worse, to the point I won't be able to do much soone, so I'm trying to empower her with knowledge to the best of what I think needs to happen. if that makes senese. She is a bit resistant but I understand. She is thinking if I get up and go to bathroom etc I will get better, or hospital etc. Trying to tell her that's not the case, don't think she understands illness yet.
I'm really bad now. Can't do much.
For any severe folks. Do you poop in a thing next to bed, do you roll over in the day? Should my mom maybe help me pee, brush my teeth? I know I shouldn't be on here I'm just trying to figure out how to move forward and my adhd and anxiety are really bad so hard to stay still. plus really bad crashing/fear. new symptoms.
how can I edit posts?
if anybody has come back from this to a stable point remind me : )
I actuall ycame out fo my last crash but pushed it to a new lower crash : ( I guess that's the way it goes, i'm trying to absolute best but i'm always behind if that makes sense. I wish I had never gotten this far, i'm having a hellava time managing.
Mine seems mostly mental too. I can't not think but when I think I crash. I'm afraid.
Thanks for reaching out y'all.
I'm really bad now. Can't do much.
For any severe folks. Do you poop in a thing next to bed, do you roll over in the day? Should my mom maybe help me pee, brush my teeth? I know I shouldn't be on here I'm just trying to figure out how to move forward and my adhd and anxiety are really bad so hard to stay still. plus really bad crashing/fear. new symptoms.
how can I edit posts?
if anybody has come back from this to a stable point remind me : )
I actuall ycame out fo my last crash but pushed it to a new lower crash : ( I guess that's the way it goes, i'm trying to absolute best but i'm always behind if that makes sense. I wish I had never gotten this far, i'm having a hellava time managing.
Mine seems mostly mental too. I can't not think but when I think I crash. I'm afraid.
Thanks for reaching out y'all.
Judee
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So, Ben, please hang in there. It sounds like your having a really rough time right now.
We have some members who are bed bound @Howard is one of them but by things he has said I think he has improved from where he used to be so it is possible to improve some.
Also I know that so much of what you are going through is probably originating in the body. Drs push the mind affecting the body while ignoring the body affecting the mind.
One of the members posted a study that showed high lactic acid can create panic attacks and ME/CFS, because our bodies switch to anerobic function very quickly, usually have higher lactic acid levels I believe.
This morning, I remembered a website I had shared with someone regarding getting off of Benzos with supplements. I still would recommend working with your doctor on this if he is knowledgeable and cooperative. Here is that website: http://www.orthomolecular.org/resources/omns/v10n09.shtml
Also, here is a link for the listings PR's Living Life from a Bed category. https://forums.phoenixrising.me/forums/living-life-from-a-bed.239/
I think you should get a bedside commode. Keeping a little water in it will keep the smells down a bit, unless you use a liner as some people do. (I know these things from helping my mom.)
They also make urinal bottles so that you could stay in the bed to urinate. Having her help you with things where you need would be good and rolling over a couple times a day is important so you don't get bedsores.
Also at the bottom of your post in small letters for a up to a week afterwards, I believe, you will see the word EDIT and you can use that to change your post if you want.
I hope this isn't too wordy for you right now. I only come on about once a day so if I don't respond to any questions right away don't get discouraged.
We have some members who are bed bound @Howard is one of them but by things he has said I think he has improved from where he used to be so it is possible to improve some.
Also I know that so much of what you are going through is probably originating in the body. Drs push the mind affecting the body while ignoring the body affecting the mind.
One of the members posted a study that showed high lactic acid can create panic attacks and ME/CFS, because our bodies switch to anerobic function very quickly, usually have higher lactic acid levels I believe.
This morning, I remembered a website I had shared with someone regarding getting off of Benzos with supplements. I still would recommend working with your doctor on this if he is knowledgeable and cooperative. Here is that website: http://www.orthomolecular.org/resources/omns/v10n09.shtml
Also, here is a link for the listings PR's Living Life from a Bed category. https://forums.phoenixrising.me/forums/living-life-from-a-bed.239/
I think you should get a bedside commode. Keeping a little water in it will keep the smells down a bit, unless you use a liner as some people do. (I know these things from helping my mom.)
They also make urinal bottles so that you could stay in the bed to urinate. Having her help you with things where you need would be good and rolling over a couple times a day is important so you don't get bedsores.
Also at the bottom of your post in small letters for a up to a week afterwards, I believe, you will see the word EDIT and you can use that to change your post if you want.
I hope this isn't too wordy for you right now. I only come on about once a day so if I don't respond to any questions right away don't get discouraged.
bensmith
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thank you so much @Judee very helpful. i'm trying my best to hang, it's been so hard i'm not going to lie. i was essentially fine 3 weeks ago and now i'm comptelely gone so i'm honestly trying to just keep going. i really appreciate your help, thanks again.
i'm tyring 30 mins rest 2 mins non rest at the momen(surf, tv no sound old movie.)
peeing in cath right now, cup cath, and trying to start pooping in bed but mom is having trouble getting there. hope in time she can see it's best i think.
i'm tyring 30 mins rest 2 mins non rest at the momen(surf, tv no sound old movie.)
peeing in cath right now, cup cath, and trying to start pooping in bed but mom is having trouble getting there. hope in time she can see it's best i think.
Pyrrhus
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That's probably a great link for you, Ben.
Do people have suggestions for documents or websites that have useful information for first-time caregivers?
That let them know that it's not psychological, along with helpful tips for caring for a severe ME person?
Judee
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Here's another good website on benzo withdrawl: https://www.benzoinfo.com/2018/11/1...-medical-advice-and-listened-to-the-internet/
Many of these people have been on these medications for longer than you but with ME/CFS our bodies don't react like others do. Many of us seem to be super-sensitive to medications. Even supplements have to be trialed by taking tiny amounts to start and then titrating up slowly.
Aww...I'm so sorry to hear that. Saying a prayer for you and your mom.
Many of these people have been on these medications for longer than you but with ME/CFS our bodies don't react like others do. Many of us seem to be super-sensitive to medications. Even supplements have to be trialed by taking tiny amounts to start and then titrating up slowly.
Aww...I'm so sorry to hear that. Saying a prayer for you and your mom.
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Knowing what to do next can be difficult to determine. I saw your post on the "Can I get some help with my parents" thread, and I agree with many of the suggestions posted. If need be, go to the hospital and have them take a look at you right now, evaluate you.
Beyond that, the only other potentially useful suggestion I have at this time, is in regards to the anxiety you mentioned. Yes, anxiety is most probably making this worse (if not unmanageable), no matter your symptoms. So I'd recommend you focus on something you can actually control right now.
Remember, your thoughts feed your emotions, sometimes negatively. But just the same, your thoughts may just as well promote wellness. So choose to think pleasant, positive, and calming thoughts (or even choose not to think/obsess at all). But either way, you don't have control over much else in this or any other moment, besides your thoughts.
See also: mindfulness, meditation, and presence practice
Hang in there,
H
Beyond that, the only other potentially useful suggestion I have at this time, is in regards to the anxiety you mentioned. Yes, anxiety is most probably making this worse (if not unmanageable), no matter your symptoms. So I'd recommend you focus on something you can actually control right now.
Remember, your thoughts feed your emotions, sometimes negatively. But just the same, your thoughts may just as well promote wellness. So choose to think pleasant, positive, and calming thoughts (or even choose not to think/obsess at all). But either way, you don't have control over much else in this or any other moment, besides your thoughts.
See also: mindfulness, meditation, and presence practice
Hang in there,
H