Not Brushing teeth and other self care

[Hope_eternal]

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.

Oh goodness, thank you for sharing. All the more reason to try to get something in place. I’ll start with a mouth wash to see if that goes ok then try out an electric tooth brush. I’m glad it cleared up for you with the changes you made!

 

[wabi-sabi]

I wish I could make it all better for him. If only love could heal.

Well it can't take the disease away, but never doubt it makes all the difference in the world.

 

[wabi-sabi]

We’ve talked about keeping a journal but he resists that

Keeping a journal can use more energy than it saves. The idea is good, but there needs to be an easier way. Lots of us use apps or wearables for this. Things like a body battery of visible or stat are more helpful when you're at the too sick to journal stage.

I use this: https://www8.garmin.com/manuals/web...UID-BD05C6A0-1C08-4554-8565-2DC8E89DD822.html

And this: https://www.makevisible.com/

Being different every day is a frustration that all of us deal with. This does get better as you learn to pace. Dealing with chronic illness is as hard mentally as it is physically. Accepting the illness so you can deal with it, but not being crushed by despair is difficult to navigate, but there is a place in the middle. Sometimes it's about fighting the illness by managing it well, not by pretending you don't have it. You might look at advice for young people newly diagnosed with type I diabetes. They go through similar things in having to learn to manage something they don't want but will not go away, and there's much more info on that than our disease. Always remember there is reason to hope even if the disease doesn't go away.

I’ll be making meals at 2 am because he’s hungry

Have you considered getting caregiving help? You will quickly become exhausted doing this. My parents have hired a caregiver and it makes things so much easier on them, and on me since I know they are struggling less.

 

[wabi-sabi]

Also take a look at the Crash Survival Guide. There's quite a lot of info, so take it slow. It will help you both understand what's going on.

https://batemanhornecenter.org/education/mecfs-guidebook/

 

[hapl808]

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.

That's impressive because we have all these 'appeal to authority' physicians and psychiatrists and their promise of, "listen to us and practice tough love and he'll get better" is more appealing than the likely reality of, "we don't really know what to do and it manifests somewhat differently in different people."

I listened to many of those physicians over the years as they cheered on my pushing through and graded exercise as I continued to get worse.

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?

Mostly leg weakness, but also pain if I strain the muscles too much. Potentially something separate from ME/CFS - initially they thought it was ALS but it didn't progress. My guess is an autoimmune condition that attacks myelin in an MS-like manner, but I can't say for sure.

 

[Rufous McKinney]

As for the electronic meltdowns I don’t think that ever stops 😂 my 20 yr still protests 🤪

I had no power for four whole days. Phone crashed on night one, as nothing was charged up.

I spent one whole evening outside looking at stars. It was really nice.

And the next day, I got that phone charged up and no way am I sitting outside looking at stars for night 2.

 

[Rufous McKinney]

He’s pretty zapped after a shower. He cannot stand up to shower.

baths are better. For not getting as wiped out.

Showers are overstimulating, plus the standing.

Does your son actually understand whats going on with this illness? Is he at all engaged in trying to figure it out and improve? Does he understand pacing?

 

[Azayliah]

If you're considering a tablet for him to use: My setup for my very bad days is an iPad paired with a wireless mouse, keyboard, headset, and controller. I can use it to play games (streamed from Steam or iPad-based).

The LEVO G2 Deluxe lets me lay flat with the tablet suspended directly over my face. It's heavy, so my carer has to roll it for me, but I can usually move the arm myself.

Something about media consumption I have noticed lately; might apply to him:
It takes more energy to dive into something new. I can play familiar games longer and with a lesser chance or severity of PEM. The same can be said of videos, webcomics, music, podcasts, etc.

 

[Hope_eternal]

baths are better. For not getting as wiped out.

Showers are overstimulating, plus the standing.

Does your son actually understand whats going on with this illness? Is he at all engaged in trying to figure it out and improve? Does he understand pacing?

That makes sense about the shower. He usually fills up the tub and will use the shower hose. Maybe he needs to stop using the shower spray hose and keep to the still water bath. No he really doesn’t take interest at all in his care and rarely speaks to the doctors mostly because of his darn sleep schedule. He doesn’t try and learn more about it but he will listen to me when I share things I’ve learned sometimes and he’ll debate my findings 🤷 it’s a challenge. He wants to know all the why’s about everything I bring to him but I’m more of a summarizing information collector. I don’t know all the whys I just know the end result lol, 😝 So I encourage him to read on it but he won’t. I’m pretty overwhelmed myself because he also has Crohn’s disease so I’m managing that illness as well on top of working full time (I did get 4 months of family leave but it is over now). All the research, all the doctor appointment calls, all the care taking has been on me so I’m limited in how much I can handle myself. My daughter will be bringing him his lunch when I go back to the office. We’ll have to see how things go. I may have to quit my job if things become too unmanageable. I get the feeling it’s overwhelming to him as well and I’m sure it’s quite scary for him. I feel scared too. He’s said to me before he doesn’t think about the illness. Maybe it’s just easier for him not to face it at this time. He will take any med or supplement you give him and we’ve been fortunate he’s tolerated them all well, thankfully. He isn’t the healthiest eater and will not eat many veggies or fruits. I do my best to find the least junky options in foods he’ll eat but it’s not the greatest of diets some days are better than others. We did eliminate gluten, dairy and sugar for about 6 months but that didn’t help with anything. I suppose he’s eating better than if he was on his own though. He’d be ordering fast food delivery every meal so there’s that. I make most of his food at home but we do get restaurant food now and then because there are days I just don’t have it in me to cook. I have spoken to him about pacing or taking breaks from stimulating activities but in come the debates. He’s 20 so he’s at that age where he’s trying to separate from the nest but unfortunately can’t so I’m betting he’s got feelings about that too. I mean what 20 yr old wants their mom up in their face 24/7. 😩 just not an ideal situation.

 

[Hope_eternal]

Keeping a journal can use more energy than it saves. The idea is good, but there needs to be an easier way. Lots of us use apps or wearables for this. Things like a body battery of visible or stat are more helpful when you're at the too sick to journal stage.

I use this: https://www8.garmin.com/manuals/web...UID-BD05C6A0-1C08-4554-8565-2DC8E89DD822.html

And this: https://www.makevisible.com/

Being different every day is a frustration that all of us deal with. This does get better as you learn to pace. Dealing with chronic illness is as hard mentally as it is physically. Accepting the illness so you can deal with it, but not being crushed by despair is difficult to navigate, but there is a place in the middle. Sometimes it's about fighting the illness by managing it well, not by pretending you don't have it. You might look at advice for young people newly diagnosed with type I diabetes. They go through similar things in having to learn to manage something they don't want but will not go away, and there's much more info on that than our disease. Always remember there is reason to hope even if the disease doesn't go away.

Have you considered getting caregiving help? You will quickly become exhausted doing this. My parents have hired a caregiver and it makes things so much easier on them, and on me since I know they are struggling less.

Thank you for all the wonderful feedback and information. I’ve saved the links. Some others have suggested using apps as well. Definitely would be great tools to track and help manage the illness. I often try to reassure him and offer hope but he calls it false hope and he doesn’t want to hear it most days. I don’t blame him. A couple doctors told him with their treatment he’d be feeling much better in a couple months and that didn’t happen so it left a bitter taste. Then of course they blamed him for it. That he wasn’t trying hard enough blah blah blah. Thankfully not straight to him, they said it to me and I let them have it! Infuriating 😤

At some point we may need to consider home care. I’m a protective momma so it’s hard for me to even think about having anyone but me or a family member care for him but I’m beginning to realize there is only so much one human can do.

 

[Hope_eternal]

If you're considering a tablet for him to use: My setup for my very bad days is an iPad paired with a wireless mouse, keyboard, headset, and controller. I can use it to play games (streamed from Steam or iPad-based).

The LEVO G2 Deluxe lets me lay flat with the tablet suspended directly over my face. It's heavy, so my carer has to roll it for me, but I can usually move the arm myself.

Something about media consumption I have noticed lately; might apply to him:
It takes more energy to dive into something new. I can play familiar games longer and with a lesser chance or severity of PEM. The same can be said of videos, webcomics, music, podcasts, etc.

Oh wow that Levo deluxe is pretty cool. Thanks for the link. I suppose we need to figure out if he feels like the setup he has now isn’t working. That certainly is a neat option. Right now he has a portable laptop lap pad and a wireless headset and wireless mouse. When he’s playing games he sits upright and when he’s watching videos he lays flat. We are looking into getting an electric adjustable bed now to help ease bed position transitions. That’s very interesting about the familiar and non familiar media/games. Something I
need to see if he’s noticed himself. Thanks so much for your response!

 

[wabi-sabi]

At some point we may need to consider home care. I’m a protective momma so it’s hard for me to even think about having anyone but me or a family member care for him but I’m beginning to realize there is only so much one human can do.

Yes and you are trying so hard. It's one of the challenges for the whole family. It's possible that he might feel a little less dependent if he had another caregiver (especially a man?). He does need the help, but for young people I think it might feel worse (and more dependent) when they are depending on Mommy. It makes it confusing when you are the one explaining how to care for the illness when he wants to be independent from you at the same time. If there's someone else he trusts (so hard after those bad doctor experiences!) to help that he doesn't need to be independent from might be easier.

I often try to reassure him and offer hope but he calls it false hope and he doesn’t want to hear it most days. I don’t blame him. A couple doctors told him with their treatment he’d be feeling much better in a couple months and that didn’t happen so it left a bitter taste. Then of course they blamed him for it.

I'm so sorry this happened. It's such a common experience. Hope is tricky to navigate. There are times when you have to give up hope and just be in the thick of it. There are other times when hope keeps you going. I follow the scientists as much as I can for real hope.

Thankfully not straight to him, they said it to me and I let them have it!

Good for you! They need to hear it.

 

[Hope_eternal]

I had no power for four whole days. Phone crashed on night one, as nothing was charged up.

I spent one whole evening outside looking at stars. It was really nice.

And the next day, I got that phone charged up and no way am I sitting outside looking at stars for night 2.

Oh no power outage definitely puts a wrench in things. We try and remember to keep a couple charging pads powered up for those sneak attacks. My husband has a few ready to go. He’s an avid camper and loves to be boy scout ready lol 😆

Looking at the stars is a wonderful idea. I love doing that from time to time. I love sitting on the deck with a fire and just look up into the vast night sky. Pretty remarkable! I’m glad to hear your phone is up and running though. It’s not easy to be disconnected.

 

[wabi-sabi]

Maybe something like this:
https://www.amazon.com/Easy-You-Say-Chronic-Disability/dp/1770850996

 

[Hope_eternal]

That's impressive because we have all these 'appeal to authority' physicians and psychiatrists and their promise of, "listen to us and practice tough love and he'll get better" is more appealing than the likely reality of, "we don't really know what to do and it manifests somewhat differently in different people."

I listened to many of those physicians over the years as they cheered on my pushing through and graded exercise as I continued to get worse.



Mostly leg weakness, but also pain if I strain the muscles too much. Potentially something separate from ME/CFS - initially they thought it was ALS but it didn't progress. My guess is an autoimmune condition that attacks myelin in an MS-like manner, but I can't say for sure.

I’m sorry that happened to you. We are taught they know best and are so desperate to get better that unfortunately we override our inner wisdom trying to be a good patient.

Crutches can take a lot of energy to use. I remember how exhausting it was when I had to use them when I had a hip injury. Do you have a wheelchair option should you need to conserve energy?

 

[Hope_eternal]

Maybe something like this:
https://www.amazon.com/Easy-You-Say-Chronic-Disability/dp/1770850996

This is so great! Thank you for finding this for me. How thoughtful! I truly appreciate it. Great idea 😊👍

 

[wabi-sabi]

How thoughtful!

That's what we're here for!

Most of us had the luck to get sick as adults. It's a special misery getting sick as a young person and having to sort out being a teenager and being sick at the same time. Much easier to say This Too Shall Pass at 40 or 60 than 20.

 

[Hope_eternal]

That's what we're here for!

Most of us had the luck to get sick as adults. It's a special misery getting sick as a young person and having to sort out being a teenager and being sick at the same time. Much easier to say This Too Shall Pass at 40 or 60 than 20.

❤️‍🩹❤️‍🩹

 

[Hope_eternal]

Yes and you are trying so hard. It's one of the challenges for the whole family. It's possible that he might feel a little less dependent if he had another caregiver (especially a man?). He does need the help, but for young people I think it might feel worse (and more dependent) when they are depending on Mommy. It makes it confusing when you are the one explaining how to care for the illness when he wants to be independent from you at the same time. If there's someone else he trusts (so hard after those bad doctor experiences!) to help that he doesn't need to be independent from might be easier.

I'm so sorry this happened. It's such a common experience. Hope is tricky to navigate. There are times when you have to give up hope and just be in the thick of it. There are other times when hope keeps you going. I follow the scientists as much as I can for real hope.


Good for you! They need to hear it.

Good points. I do worry about the dynamic here. I try not to be too much in his face but knowing he is in that room alone, isolated day in and day out is utter agony. I hate this for him so much. I agree though someone outside of me, and yes definitely agree he needs a male influence/connection outside his dad. Early in when we didn’t know he had ME he had a male physical therapist whose company he enjoyed. I will need to look more into this. Thanks for the nudge.

 

[Wayne]

knowing he is in that room alone, isolated day in and day out is utter agony.

Dear @Hope_eternal -- I've been really struck by this (loving) thread you started for your son, and feel I can truly relate to what your son is going through. The reason being my own health challenges started for me at a similar age as your son.

I was a 15-year old when I suffered a serious head injury/whiplash, which eventually set the stage for my ME/CFS. In many ways during my teens and twenties, I felt "lost" as I struggled to deal with chronic fatigue, and the confusion caused by an inability to function in the manner I had been used to up to that point.

At the age of 27, I came upon a "spiritual mantra" that turned out to be a catalyst for me in coming to terms with the challenges I was facing, and giving me the courage and inspiration to diligently seek answers for myself. What was interesting is that I came upon the mantra even though I didn't consider myself particularly religious or spiritual (turns out that doesn't matter).

Anyway, it was a turning point in my life, and couldn't help but wonder as I hear you describe what your son is going through whether he might be interested in knowing about this mantra. I have a link in my signature to a 3-min. video on this. I also just came across a 20-minute video which describes in much more depth what the Song of HU is, and what it can do for a person.

I don't know whether or not your son would be interested in this, but you might. You might also find it interesting, as it's primarily about love, and would seem to fit your loving nature. Below is a link to the 20-minute video. -- All the Best to you, your son, and your family as you traverse these challenging times.

HU: Experience the Sound of Soul