Not Brushing teeth and other self care

[Hope_eternal]

When I’m at my sickest, I sleep with headphones and sound on.
Different people have different problems, but if a racing mind is one of his problems, he might feel he need the sound to calm his head enough to get any sleep or rest at all. I use audiobooks and I put in a timer so it stops by itself, but if I wake up during the night, I turn on the book again, to be able to get back to sleep.
(While when I’m better, I wouldn’t dream of putting on sound in the middle of the night. But the headphones themselves gives a kind of calming effect, even without any sound)

I’m member of a Facebook group where we uses smartwatches to track how we respond to different situations. And while some gets a bit of a surprise when they discover how stressful online activities are for them, others are a lot calmer online. Some people have less stress in their body being online than when they sleep!

(And by the way…bathing/showering is one of the hardest activities of them all, for all of us, it seems. I visit my mother in law once a week, and sometimes I push her in her rolling chair around the block, up and down a little bit. But my watch shows me that the shower (even if I’m sitting on my shower chair) is far more stressful than the walking and the pushing of a heavy mother in law)

I’m very impressed by you, how you understand, and how you want to help him. It would perhaps be good for him to connect with someone else with me/cfs?

Thank you so much for the sound insight. I hadn’t considered that. That very well may be the reason he keeps them on. I’m learning new things everyday. It helps to hear from you all who are experiencing similar limitations and struggles. Sometimes it’s hard to get feedback from him but there are times he does let me into his world a bit. I remember a day when doctors and psychiatrist were basically chastising me for letting him have such destructive behaviors and that I needed to set boundaries on the lap top and insist on a bed time schedule. So I had a tough love talk with him and told him he needed to follow the advice of the doctors and at least try it otherwise he if wants to just dismiss doctors and live his own way, he’s welcome to but he’ll have to do it on his own. (Mind you I didn’t know he had ME at this point and I really thought the doctors knew best at that time). Well, I’ll never ever forget what he said to me. He told me he’d surely be dead if I wasn’t helping him. There was no way he could take care of his basic needs. At that point my mindset changed and I never looked back. I knew with all my heart that he could not help what was happening. I cried for days. I still cry for him. For all of you. It’s such a life altering illness. I do try my best to help him and understand him. I appreciate you saying that.,I did mention there are support groups and forums but he didn’t seem interested. Maybe with time that will change. Before this he was super social, outgoing, lots of friends. Now he isolated and doesn’t talk to anyone but us. He says that’s due to lack of energy. I also suspect it’s hard to hear about healthy people having the time of their lives at college and taking trips while he can barely get himself out of bed for a drink of water

I’m am so grateful to everyone sharing with me things that help them. I try to think out of the box but I’m not struggling with ME so what sounds doable to me might very well be a monumental feat to someone with the illness. Thank you so much for sharing

 

[Hope_eternal]

For a tablet, I suggest an Amazon kindle. Besides surfing the web, books can be downloaded from Amazon. It is less physical effort to flip through pages on a tablet than to do so by hand with a paper book. Also, it is easier to hold a tablet than a book.

For teeth, xylitol comes in different forms for dental care. It kills bacteria. Tastes sweet like sugar. An old T-shirt can be ripped up for rubbing across the teeth. Fluoride free toothpaste can be finger rubbed on the teeth.

Thank you for these suggestions. I like the idea of downloading books. Are they audio books or will he need to read it in the screen. Maybe there are both options? I will look into it.

I’m familiar with xylitol gum. I will look at the dental care options. Thanks so much for these great suggestions!

 

[linusbert]

Coconut Oil pulling is a nice edition to tooth maintenance, but it likely requires getting up, the sink, warm water later etc. But my daughter swears her gums are better now after doing some of that.

not necessarily, i have a cup next to my bed and brush my teeth with pulling and spit it in the cup, and clean it later when i would go to the toilette. sadly i cant use real oils, i have to use a expensive mouthwash for the pulling but the mechanics are the same.

 

[Hope_eternal]

It's a difficult balance. I think that any time I spend on the phone or computer probably affects me negatively, but it's also my only contact with the outside world. I sometimes try to rewatch YouTube stuff so I can lie in bed and actually not look at the screen but just half-listen. Screen time affects different people differently, but you're not wrong thinking that it could have some negative as well as positive aspects.

And credit to you for thinking of all this and taking it seriously. I've seen so many people whose families don't believe them, think they should just 'walk it off' kind of attitudes, etc. You're doing more than 99% of people.

Oh yes he watches YouTube a lot. He mentioned today that sometimes he closes his eyes and just listens. I think keeping him entertained and listening to and watching things he enjoys is very helpful mentally. I’m very glad he can at least have that.

That just breaks my heart that people don’t have their loved ones support. No one should have to endure this alone.

 

[hapl808]

I’m learning new things everyday. It helps to hear from you all who are experiencing similar limitations and struggles. Sometimes it’s hard to get feedback from him but there are times he does let me into his world a bit.

Keep in mind, he probably doesn't understand it himself. It took me so many years to realize that a long phone call on a Monday might affect me on a Wednesday. It made (makes) no sense to me, but that doesn't mean it isn't happening. And it all manifests differently with different people. I'm rarely bedbound for long, but I can't make it to the kitchen or bathroom without crutches. I've been housebound for years. I can talk on the phone almost every day as long as I keep my time pretty limited. But a video game will crash me within 5-10 minutes - that's an absolute no for me.

If he can, it's good to keep track of his symptoms and crashes and such. I associated a lot of things with diet when I think it was actually more exertion based. But even now after decades, I have no real idea what's going on - just some vague correlations.

 

[dave11]

Thank you for these suggestions. I like the idea of downloading books. Are they audio books or will he need to read it in the screen. Maybe there are both options? I will look into it.

I’m familiar with xylitol gum. I will look at the dental care options. Thanks so much for these great suggestions!

Both options are available... read or listen.

Amazon has books which are professionally read. Audible Audiobooks.

Kindle books which are not part of Audible can be read, or can often be listened to using a computer generated voice - Text to Speech built into the kindle book.

The print size and boldness are adjustable, as well as back screen light level.

With a little searching, there are lots of kindle books for free or 99 cents.

The kindle version is almost always cheaper than the paperback. Books downloaded are transferable between multiple kindle tablets.

I have prime membership, and am not sure how things work without it.

 

[Atlas]

You're doing a great job. I'm also severe/very severe and in bed 99% of the time. And my Mum takes care of me too and has very likely saved my life.

I will share some of my experience which might possibly be relevant in some ways to your son.

At my worst I had to use a toilet bucket next to my bed and didn't brush my teeth at times when my arms were too sore and exhausted and my energy envelope was at it's limit. What I did during that time was chew mint flavoured gum with xylitol, as others mentioned. I didn't shower for about a year but I had a bath lying down about every 2 weeks at that time. I was thankfully able to move to a room where the bathroom is just across the hall.

These days I have stabilized somewhat, I'm now able to make 3-4 trips to the bathroom per day. I'm now able to have a sitting quick wash most days using a shower stool and the shower spray handle. What did personally help me stabilize was accepting the diagnosis, and "aggressive rest", including radical cognitive rest. It can be incredibly difficult to overcome the "tired but wired" feeling of having to always be doing something when agressive resting, but I was able to focus on the clouds out my window and on lament and prayer, and after about 10 days of aggressive resting, I found I could just be OK with doing nothing. The beginning was the most difficult part. I was only able to do it by child locking my phone to disable the internet and only allow essential apps such as messaging my Mum. I did not do absolutely nothing, but did a small amount of reading and memorization for a short duration each day, so that for the rest of the day I could focus on the memorization when my mind wandered too much. But during the majority of the time I was just lying there resting and focusing on restful things. It definitely helped to have a window to look out. I did that for over a month and I'm still here bedbound, it didn't cure or anything but it did allow me to establish a more stable state and not be in constant pain.

I'm sharing this because I do believe balancing cognitive activity with cognitive rest is important in this illness in order to establish a restful rhythm, especially if one has frequent cognitive dysfunction symptoms. The wired and tired still comes back if I'm not careful to balance my day cognitively. On the other hand, doing nothing for too long and having absolutely nothing to focus on or stimulate the mind can also be detrimental. I think a balance is ideal, and the right balance may be different for each of us depending on our current energy envelope.

But as for your son, you are doing well, it will not be good to force anything, as he knows what he is experiencing best. It might be that his cognitive activity threshold before hitting PEM and negative after effects is not so bad compared to his physical limits, such that he can do light activity throughout the day with no problem. But you can inform and encourage him with pacing resources for ME (such as attached) which talk about the helpfulness of pacing and resting, so that he can come to his own conclusion about what a healthy balance might be for him, and support him with any changes he thinks would be beneficial to the management of this illness and to his wellbeing and everyday energy levels.

For me my cognitive envelope became very small for a while and even things like listening to a podcast or reading light material or even TV or music sapped my energy rapidly. Now I can do those things but still not too much or it gives me PEM and deterioration and I'll have less energy later. This will vary based on the individual's severity and other factors however... some people seem to have no problem with music and passive listening.

Sleep is important too and I know for many of us our circadian rhythms are way out of whack and some find it difficult or nigh impossible to fix it. I did find when I finally managed to establish a fixed sleep schedule that it was beneficial to my cognitive energy levels, however one has to be highly motivated to make this change as it can be difficult. I found taking melatonin at a fixed time 30min before bed for a couple months helped me to establish a rhythm, along with trying to get unfiltered natural light during the day through an open window when I could, and using flux/orange light filter (to filter blue light) if using any devices at night. (Blue light stimulates the body to tell it that it's still day time.)


I wish you and your son all the best.

-------

Here are some other tips which might be relevant for someone this severe:

1. If he eventually reaches a level where a shower stool is an option, make sure to put a stool outside the bath/shower with a towel on it, so can be easily swiveled onto the outer stool to dry/dress oneself. I found having a short flannel wash+feet wash on a shower stool much less energy requirement than both a full shower or a bath, which requires getting up from the floor at the end of it.

2. Also I totally get him not wanting your assistance with tooth brushing because any kind of unpredictable physical touch can really drain me extremely quickly, I think because of how it activates the brain. What I found doable in the end was to get an electric toothbrush and brush once a day while on the toilet at night, resting my elbow on my knee, or while sitting on the stool which is placed next to the sink which I rest on when necessary. For me a relatively low stool is best so that I can hang my head in between my legs to calm down the tachycardia from orthostatic intolerance (POTS).

3. Water next to bed. If you're not already doing this, a great help for me in staying hydrated with minimal energy was when we got a large glass jug water dispenser, and put it right next to my bed, (within close arms reach on my bedside table). With a cup ready to be refilled. Then my Mum refills it usually every night. The current one has 2x 4L flasks, so it actually only needs to be refilled every 3 or so days.

4. Hooks for headphones/headset/earmuffs if required. Having everything I need during the day within arms reach on the wall or the table really helps to conserve energy so that I have the energy for bathroom trips etc.

 

[Strawberry]

@Hope_eternal I am glad you quit listening to drs and instead listen to your son!

I don’t know how long you have been here, but are you and your son aware of Whitney Dafoe? He has his ups and downs, but has been able to figure out how to keep his sanity while in the downs where very little crashes him. There is much information on the web, some written by Whitney.

Also, I need to ask, why does he goes downstairs daily? Is this something that could be changed? If he goes downstairs for food or social, could he be moved downstairs permanently? I’m mild moderate, and stairs are extremely energy using.

I agree with journaling, he might not realize what is truly crashing him. Leg work (stairs) and arm work (teeth brushing) are terrible. The laptop is possibly causing crashes that he doesn’t know. But simple modifications could make it easier.

Best to you!

 

[elliem]

so much good advice here. I’m so glad you’ve found these online communities. It’s so isolating and daunting for the newly ill and the new carers. Your son is so lucky to have you.

I second Atlas’s excellent point about an electric toothbrush. I’m usually only able to brush my teeth once a day, but with a quality electric toothbrush, sitting down, with my elbow propped up on my leg, I can do a really good clean. I use mouthwash in the morning as that’s all I can manage.

Another excellent suggestion is a smartwatch to help with pacing. My Garmin watch tells me when my body is in ‘stress’ (low, medium or high), ‘rest’, or ‘activity’ (rare, but eg walking to bathroom). I found so much power from the knowledge that even though I was lying in bed all day, my watch was telling me objectively that my body was still in stress. I almost try to gameify it by trying to get into the blue ‘rest’ phase. (Eg yoga nidra, but honestly beta blockers made the biggest difference). I don’t blame myself when I’m stuck in ‘stress’ mode. It helps explain why I feel so shit. But I do mentally count it as a win when I can get into blue ‘rest’.

An interesting thing for me about the smartwatch tracking is how much worse my laptop is than my phone. If I’m on my laptop, my stress scores are high. And I realise I’ve triggered PEM sometimes from laptop use in bed. But as long as I’m not in a crash, I can usually use my phone in bed without causing a PEM or a crash, and can now often stay in the blue ‘rest’ zone while on my phone. Not sure if it’s the way you hold it, or the smaller screen, or both, but my smartwatch helps me see the difference between being online (reading short things, watching light videos on YouTube etc) on my laptop and phone.

Perhaps if your son had the tools (like a smartwatch) then it could help him find the balance himself between entertainment/ connection to the outside world on his laptop with the rest his body and brain needs?

 

[wabi-sabi]

Thank you so much for the sound insight. I hadn’t considered that. That very well may be the reason he keeps them on.

Sound is one of the things I find most taxing and I definitely sleep in my noise cancelling headphones every night. I also sleep with an eyemask despite having two layers of blackout curtains. Otherwise, it's just too loud and bright to sleep.

You are your son are in such a tough place. When your energy is this small, everything is a challenge. I spend more time than is healthy on the computer, but I need to do that. Perhaps it is the same for your son. I can no longer read very much. It is just too hard an energy suck. Unfortunately, if I just lie in bed, then I will start to think, which is as bad an energy suck as reading. I watch a lot of youtube to prevent myself thinking or reading and this helps on energy conservation. However, I have to be very careful what I watch. Some things are more taxing to watch than others. If you can help him with this, it might be good.

Things that drain my energy the least are meditation videos or some very simple audiobooks, like Agatha Christie. This are what I listen to when I am too tired for anything else, but have to prevent myself from thinking. Listening to audiobooks on slow speed is helpful too.

On the tooth front: I am not able to brush my teeth everyday. I floss in bed and then brush my teeth in the sink when I am able. Doing this every few days has kept my teeth OK. It helps a lot to eat healthy food, I think too. Right now I can shower about once a week to 10 days. Yes, I smell awful, but I have to calculate when I can stand the crash. There were times during the summer when I would lie on the porch swing in the back yard and my mother would dump buckets of water over me. I found this to be much less taxing than showering. I go around the house by wheelchair. Do not waste energy walking even a few steps to the bathroom when you can roll. If I had to walk I would not be able to brush my teeth either.

Ultimately, your son will have to learn to pace. The hope is that he will have more energy when he's not crashing all the time. Of course, it's very hard when your energy is a tiny sliver. He might look at Whitney's blog for ideas on how to manage.

You're doing the right thing asking questions and we are happy to help as much as we can.

 

[wabi-sabi]

Another thought...when he is able to shower make sure the bathroom is set up for him so he doesn't have to reach for soap, towels etc. Everything should be to hand and where he needs it. When he's in the shower lay out clean clothes/PJs so he doesn't have to get these. I usually put a towel in my bed, so when I get out of the shower I can lie down and drip dry and not have to waste energy on drying myself. When I have air dried and rested, then I get dressed. Break each task into its smallest component parts and rest between each part. If there's any part you can do for him-sometimes my mother washes my hair- do that. You could even do things like measuring out a piece of floss for him or putting the paste on the toothbrush for him. In my situation I am able to get my own clothes from the dresser, but my parents get me towels, since going to the linen closet on top of taking a shower is too hard. I keep dental floss on the nightstand, so when I have the energy it's right there.

If he's able to tell you what would be most helpful, that's better. But if he doesn't know, then you need to experiment with what helps him save the most energy. He will have to be able to bank energy to do things like dental hygiene and bathing.

 

[sometexan84]

I don't have tips for how to get it done... but I wanted to stress the importance of mouth hygiene in ME/CFS...

Poor mouth hygiene + my autoimmune issues caused me to develop Behcet's disease, and then Uveitis from that.

Getting back into brushing my teeth regularly cleared up all of it. At that time, I was just too tired to stay on top of hygiene. Sad, but true.

 

[Hope_eternal]

Keep in mind, he probably doesn't understand it himself. It took me so many years to realize that a long phone call on a Monday might affect me on a Wednesday. It made (makes) no sense to me, but that doesn't mean it isn't happening. And it all manifests differently with different people. I'm rarely bedbound for long, but I can't make it to the kitchen or bathroom without crutches. I've been housebound for years. I can talk on the phone almost every day as long as I keep my time pretty limited. But a video game will crash me within 5-10 minutes - that's an absolute no for me.

If he can, it's good to keep track of his symptoms and crashes and such. I associated a lot of things with diet when I think it was actually more exertion based. But even now after decades, I have no real idea what's going on - just some vague correlations.

I truly believe you’re right, that he doesn’t understand it himself. We’ve talked about keeping a journal but he resists that. He says why bother since it seems every day can be different. I think he’s really not ready to face looking at it in such a concrete way.,Honestly, I notice his body’s energy changes more than he does. But like you he did realize high intensity video games crash him. So he no longer plays those. I’m so sorry to hear you have had the illness for so long. Are the crutches needed due to pain in your legs?

 

[Hope_eternal]

You're doing a great job. I'm also severe/very severe and in bed 99% of the time. And my Mum takes care of me too and has very likely saved my life.

I will share some of my experience which might possibly be relevant in some ways to your son.

At my worst I had to use a toilet bucket next to my bed and didn't brush my teeth at times when my arms were too sore and exhausted and my energy envelope was at it's limit. What I did during that time was chew mint flavoured gum with xylitol, as others mentioned. I didn't shower for about a year but I had a bath lying down about every 2 weeks at that time. I was thankfully able to move to a room where the bathroom is just across the hall.

These days I have stabilized somewhat, I'm now able to make 3-4 trips to the bathroom per day. I'm now able to have a sitting quick wash most days using a shower stool and the shower spray handle. What did personally help me stabilize was accepting the diagnosis, and "aggressive rest", including radical cognitive rest. It can be incredibly difficult to overcome the "tired but wired" feeling of having to always be doing something when agressive resting, but I was able to focus on the clouds out my window and on lament and prayer, and after about 10 days of aggressive resting, I found I could just be OK with doing nothing. The beginning was the most difficult part. I was only able to do it by child locking my phone to disable the internet and only allow essential apps such as messaging my Mum. I did not do absolutely nothing, but did a small amount of reading and memorization for a short duration each day, so that for the rest of the day I could focus on the memorization when my mind wandered too much. But during the majority of the time I was just lying there resting and focusing on restful things. It definitely helped to have a window to look out. I did that for over a month and I'm still here bedbound, it didn't cure or anything but it did allow me to establish a more stable state and not be in constant pain.

I'm sharing this because I do believe balancing cognitive activity with cognitive rest is important in this illness in order to establish a restful rhythm, especially if one has frequent cognitive dysfunction symptoms. The wired and tired still comes back if I'm not careful to balance my day cognitively. On the other hand, doing nothing for too long and having absolutely nothing to focus on or stimulate the mind can also be detrimental. I think a balance is ideal, and the right balance may be different for each of us depending on our current energy envelope.

But as for your son, you are doing well, it will not be good to force anything, as he knows what he is experiencing best. It might be that his cognitive activity threshold before hitting PEM and negative after effects is not so bad compared to his physical limits, such that he can do light activity throughout the day with no problem. But you can inform and encourage him with pacing resources for ME (such as attached) which talk about the helpfulness of pacing and resting, so that he can come to his own conclusion about what a healthy balance might be for him, and support him with any changes he thinks would be beneficial to the management of this illness and to his wellbeing and everyday energy levels.

For me my cognitive envelope became very small for a while and even things like listening to a podcast or reading light material or even TV or music sapped my energy rapidly. Now I can do those things but still not too much or it gives me PEM and deterioration and I'll have less energy later. This will vary based on the individual's severity and other factors however... some people seem to have no problem with music and passive listening.

Sleep is important too and I know for many of us our circadian rhythms are way out of whack and some find it difficult or nigh impossible to fix it. I did find when I finally managed to establish a fixed sleep schedule that it was beneficial to my cognitive energy levels, however one has to be highly motivated to make this change as it can be difficult. I found taking melatonin at a fixed time 30min before bed for a couple months helped me to establish a rhythm, along with trying to get unfiltered natural light during the day through an open window when I could, and using flux/orange light filter (to filter blue light) if using any devices at night. (Blue light stimulates the body to tell it that it's still day time.)


I wish you and your son all the best.

-------

Here are some other tips which might be relevant for someone this severe:

1. If he eventually reaches a level where a shower stool is an option, make sure to put a stool outside the bath/shower with a towel on it, so can be easily swiveled onto the outer stool to dry/dress oneself. I found having a short flannel wash+feet wash on a shower stool much less energy requirement than both a full shower or a bath, which requires getting up from the floor at the end of it.

2. Also I totally get him not wanting your assistance with tooth brushing because any kind of unpredictable physical touch can really drain me extremely quickly, I think because of how it activates the brain. What I found doable in the end was to get an electric toothbrush and brush once a day while on the toilet at night, resting my elbow on my knee, or while sitting on the stool which is placed next to the sink which I rest on when necessary. For me a relatively low stool is best so that I can hang my head in between my legs to calm down the tachycardia from orthostatic intolerance (POTS).

3. Water next to bed. If you're not already doing this, a great help for me in staying hydrated with minimal energy was when we got a large glass jug water dispenser, and put it right next to my bed, (within close arms reach on my bedside table). With a cup ready to be refilled. Then my Mum refills it usually every night. The current one has 2x 4L flasks, so it actually only needs to be refilled every 3 or so days.

4. Hooks for headphones/headset/earmuffs if required. Having everything I need during the day within arms reach on the wall or the table really helps to conserve energy so that I have the energy for bathroom trips etc.

Wow thank you so very much for all your insights and suggestions. I’m glad to hear you are having some improvement. I am in agreement with all of your points. Some I have expressed to him yet they are not readily accepted by him at this time. He’s always been my intellectual debater. I used to say he’d debate you to death! lol . I tread lightly because it’s him that is going through it and he doesn’t have control over much so I try and let him have the final say in things as much as possible but there are things I worry about daily. I’m trying very hard to make improvements in his hygiene but again I don’t push as to not cause him more stress. I keep trying to gently provide ideas and see if he’ll consider to try them. He too has had some small improvements which is why he ventures downstairs once a day. He used to not be able to do this but once we added in an antiviral 3 months ago he’s been able to do it pretty much consistently. The other improvement was his ability to speak at an audible level. He could barely utter a word before most days. So we are grateful to see at least a slight improvement. An interesting side note, when I ask him if he’s noticed improvements he always says no. I imagine he just feels not so great in his body and that’s all he perceives. I worry so much about how I’ll be able to continue to care for him. I have been on family leave for the last 4 months but am due to go back next week. I was hoping we would have him in a stronger position. I carry the health insurance so at this time I cannot quit my job to care for him full time. Luckily I am on a hybrid work schedule so I’m home 2 days plus weekends. My daughter has come home to help me when I go back to work. Her job is fully remote but I’m not sure for how long. I wonder how families manage. Thanks again for all the wonderful information and the attachment! Wishing you much health and recovery

 

[Hope_eternal]

@Hope_eternal I am glad you quit listening to drs and instead listen to your son!

I don’t know how long you have been here, but are you and your son aware of Whitney Dafoe? He has his ups and downs, but has been able to figure out how to keep his sanity while in the downs where very little crashes him. There is much information on the web, some written by Whitney.

Also, I need to ask, why does he goes downstairs daily? Is this something that could be changed? If he goes downstairs for food or social, could he be moved downstairs permanently? I’m mild moderate, and stairs are extremely energy using.

I agree with journaling, he might not realize what is truly crashing him. Leg work (stairs) and arm work (teeth brushing) are terrible. The laptop is possibly causing crashes that he doesn’t know. But simple modifications could make it easier.

Best to you!

Thank you, I am glad too. I mostly did listen to him, it was just that one time I had that talk because of all the pressure I was getting from doctors and family. But I realized quickly they were wrong, thankfully. I have heard of Whitney Dafoe. His story really tears at my heart. I didn’t know that ME could get that severe and I again cried for days, for him, for my son, for everyone that has been affected by the illness. I’m disheartened that until recently the illness hadn’t gotten much attention. I’m astounded that for decades severely ill people have been ignored, blamed and left suffering and alone. It’s absolutely appalling.

 

[Hope_eternal]

Also, I need to ask, why does he goes downstairs daily? Is this something that could be changed? If he goes downstairs for food or social, could he be moved downstairs permanently? I’m mild moderate, and stairs are extremely energy using.

sorry I thought I had answered this for you but realized it was in a response to another member. He has had some small improvements which is why he ventures downstairs once a day. He used to not be able to do this as it would make him crash but once we added in an antiviral 3 months ago he’s been able to do it pretty much consistently. The other improvement was his ability to speak at an audible level. He could barely utter a word before most days. So we are grateful to see at least a slight improvement.

 

[Hope_eternal]

so much good advice here. I’m so glad you’ve found these online communities. It’s so isolating and daunting for the newly ill and the new carers. Your son is so lucky to have you.

I second Atlas’s excellent point about an electric toothbrush. I’m usually only able to brush my teeth once a day, but with a quality electric toothbrush, sitting down, with my elbow propped up on my leg, I can do a really good clean. I use mouthwash in the morning as that’s all I can manage.

Another excellent suggestion is a smartwatch to help with pacing. My Garmin watch tells me when my body is in ‘stress’ (low, medium or high), ‘rest’, or ‘activity’ (rare, but eg walking to bathroom). I found so much power from the knowledge that even though I was lying in bed all day, my watch was telling me objectively that my body was still in stress. I almost try to gameify it by trying to get into the blue ‘rest’ phase. (Eg yoga nidra, but honestly beta blockers made the biggest difference). I don’t blame myself when I’m stuck in ‘stress’ mode. It helps explain why I feel so shit. But I do mentally count it as a win when I can get into blue ‘rest’.

An interesting thing for me about the smartwatch tracking is how much worse my laptop is than my phone. If I’m on my laptop, my stress scores are high. And I realise I’ve triggered PEM sometimes from laptop use in bed. But as long as I’m not in a crash, I can usually use my phone in bed without causing a PEM or a crash, and can now often stay in the blue ‘rest’ zone while on my phone. Not sure if it’s the way you hold it, or the smaller screen, or both, but my smartwatch helps me see the difference between being online (reading short things, watching light videos on YouTube etc) on my laptop and phone.

Perhaps if your son had the tools (like a smartwatch) then it could help him find the balance himself between entertainment/ connection to the outside world on his laptop with the rest his body and brain needs?

I am so glad I found this forum as well. Everyone has been extremely supportive and helpful. I am so very grateful to you all and am impressed with all the thought and care that goes into each of your responses. Quite a remarkable feat considering how you are feeling and what you are going through. It touches my heart. I absolutely love the garmin watch suggestion. Brilliant! That sounds like a perfect way to monitor things. Thank you so much for sharing that. I do feel like it would be good for him to see possible triggers and make decisions based on that data. He’s a science guy so that might resonate with him.

 

[Hufsamor]

mostly did listen to him, it was just that one time I had that talk because of all the pressure I was getting from doctors and family

For all it’s worth…if I were in your shoes, I would have pushed him too.
Most likely harder and over a longer time than you have done.
Because that’s what’s working in so many other cases, a bit rough love instead of just going with the flow.

 

[Hope_eternal]

Sound is one of the things I find most taxing and I definitely sleep in my noise cancelling headphones every night. I also sleep with an eyemask despite having two layers of blackout curtains. Otherwise, it's just too loud and bright to sleep.

You are your son are in such a tough place. When your energy is this small, everything is a challenge. I spend more time than is healthy on the computer, but I need to do that. Perhaps it is the same for your son. I can no longer read very much. It is just too hard an energy suck. Unfortunately, if I just lie in bed, then I will start to think, which is as bad an energy suck as reading. I watch a lot of youtube to prevent myself thinking or reading and this helps on energy conservation. However, I have to be very careful what I watch. Some things are more taxing to watch than others. If you can help him with this, it might be good.

Things that drain my energy the least are meditation videos or some very simple audiobooks, like Agatha Christie. This are what I listen to when I am too tired for anything else, but have to prevent myself from thinking. Listening to audiobooks on slow speed is helpful too.

On the tooth front: I am not able to brush my teeth everyday. I floss in bed and then brush my teeth in the sink when I am able. Doing this every few days has kept my teeth OK. It helps a lot to eat healthy food, I think too. Right now I can shower about once a week to 10 days. Yes, I smell awful, but I have to calculate when I can stand the crash. There were times during the summer when I would lie on the porch swing in the back yard and my mother would dump buckets of water over me. I found this to be much less taxing than showering. I go around the house by wheelchair. Do not waste energy walking even a few steps to the bathroom when you can roll. If I had to walk I would not be able to brush my teeth either.

Ultimately, your son will have to learn to pace. The hope is that he will have more energy when he's not crashing all the time. Of course, it's very hard when your energy is a tiny sliver. He might look at Whitney's blog for ideas on how to manage.

You're doing the right thing asking questions and we are happy to help as much as we can.

Thank you so much for your responses. I appreciate you taking the time to offer suggestions and tips. I do ask how I can help but he doesn’t seem to want it. I can understand it’s probably very difficult to be in the stage where you are supposed to be separating from your parents, there’s that real
Primal drive to do so, yet you aren’t able to so he’s probably grappling a lot with that right now. I just let him know I’m here if he needs anything. I do get everything prepared for him for showers and have offered to help with T-shirt changes and armpit wipes. I get him all his food and drinks and wake up a few times to check on him during the night. There has been times when he misses dinner so
I’ll be making meals at 2 am because he’s hungry I wish I could make it all better for him. If only love could heal.

 

[Hope_eternal]

For all it’s worth…if I were in your shoes, I would have pushed him too.
Most likely harder and over a longer time than you have done.
Because that’s what’s working in so many other cases, a bit rough love instead of just going with the flow.

I read mixed reviews on that approach. I do know that when this all started he was pushing himself at college. It got so bad he couldn’t get out of bed, he was sleeping 16 hrs a day. He has to medically withdraw. We tried physical therapy which crashed him. Any time we experimented with adding more activity he crashed. It got so bad he could barely utter a word. So idk it just seemed right not to push him at that point.