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Are more people so severe?

Messages
92
My daughter, 24 yo, has been diagnosed with ME and POTS end of 2020
She is completely bedridden since Oct 2021. Hasn't showered since, lives on drinking food and a little fruit. No tv / phone as least as possible. Living in the dark and suffers from hyperacusis and more.
Communication got less and less because (fear of ?)PEM.
She removed her whatsapp and sometimes sends a message through SMS, no talking
And we have a writing board for short messages.
Goes to the toilet on her own which is beside her bed.

This started a while ago with the intention for her to get as much rest as possible, but it now feels like she's slipping away more and more. By no means do I want to disrespect anyone but when I read people mentioning they are severe I think "well, at least you are able to write this". I don't know...
Want her to do something, wash her face, change underwear, communicate a little, try meds (abilify) , but she doesn't want to. Reacts a bit angry last time I tried something, which is a while ago. So I stopped.
I am afraid if I ask to much I'll make it worse, but like I said, it only seems to get worse

Really, really don't know what to do
 

Anchoress

Senior Member
Messages
1,063
Is there no medical input? Seems that this is way off the scale of any even near ..??healthy??normal??? response to this illness.. Itis as you rightly say not helping in any way. She is after all in YOUR home. As you say it is FEAR that is making it worse. Being ruled by fear is not any way to deal with this.
 

hapl808

Senior Member
Messages
2,178
Is there no medical input? Seems that this is way off the scale of any even near ..??healthy??normal??? response to this illness.. Itis as you rightly say not helping in any way. She is after all in YOUR home. As you say it is FEAR that is making it worse. Being ruled by fear is not any way to deal with this.

I'm not sure what a 'healthy' or 'normal' response to this illness can be?

When I was mild-moderate, I thought all the stories of severe people sounded crazy and more like mental issues. Then when I slipped more into severe, I realized that I had been totally wrong. I'm rarely bedbound, but often can't shower for weeks or months because even on a stool it's too exhausting. Part of the reason I ended up more severe was having people around me who thought encouraging me to do more PT and more doctor's appointments would be 'good' for me. Unfortunately that ended up causing my decline from moderate but semi-functional to more severe.

I think severe is weird because it manifests in different ways. Some like Whitney or others have long periods where they can't use a phone or talk or type. I feel that I'm more moderate-severe on that scale. I can't stand on my own and cognitive tasks exhaust me quickly, but I can still talk on the phone for 20 mins and make it to the bathroom and eat normal foods and post here.

I don't take that for granted, though. And I don't assume that I'm able to do that because of any superior approach. Probably just 'luck', if you want to call it that.

Sorry I don't have more to offer, but I have to disagree that it's a choice to be 'ruled by fear'. We would rarely say that to someone with Alzheimers or ALS that they are allowing themselves to be ruled by fear, yet with ME/CFS type illnesses, we all tend to see it only through our own lens of experience. I certainly was guilty of that and used to assume that I had figured out how to deal with it and cope - until that didn't work anymore.
 

SNT Gatchaman

Senior Member
Messages
302
Location
New Zealand
I'm sorry to read how sick your daughter has become. She sounds very severe. I do not endorse the comment above which is framing your daughter's condition as a fear-based, out-of-proportion response to the illness. We do not know why some patients descend to becoming so sick, but there is no evidence that psychology has any role to play in this. This is a biological disease.

Some people are able to write while being severely affected - though it may take them days to write a couple of sentences, a few characters at a time.

Regardless of where you live, perhaps the recently-published 4-page summary of the UK's NICE guidelines may help. There is a section on "Supporting the most severely affected patients". If she isn't under regular medical review, that may be a good idea, as she may need nutritional support.

https://s3-eu-west-2.amazonaws.com/...rn/docs/core-guidance-2023-cpd-handout-v1.pdf
 

L'engle

moogle
Messages
3,250
Location
Canada
Many people are in fact this ill. If you search here and other places you will find accounts of people who are bed bound and unable to speak. Many people here post when they are well enough, and not when they aren't. People have stopped posting because they were unable to allocate energy to this.

You're in a difficult spot and that is stressful. We can't really say what is going on with your daughter but hopefully you can work things out more with time. Getting so severe so quickly is a hugely difficult thing to go through, especially in the space of less than 2 years. That is frightening. It's great that you are willing to help her and view this as a real illness.

If she is able to see a specialist that could be helpful. Otherwise, helping her by making it as easy to do things as possible might be the best you can do for now. Supplements such as b12 can be very helpful for some people, but if her condition is that severe, it is reasonable to be cautious and start with small (very small!) amounts of anything that she takes.

There's an entire section of the forum for bed bound people, those that can write anyway. The ones who aren't well enough to post, aren't here because they can't be. There is an area for caregivers as well.

There are very likely things that can improve her condition. Don't lose hope but be careful about pushing too much.
 

wabi-sabi

Senior Member
Messages
1,532
Location
small town midwest
Bateman Horne also has a crash survival guide that may help you help her.

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

I can only echo what @SNT Gatchaman and @L'engle say- some of us unfortunately do get this sick, and none of it is due to fear or psych issues. For me it has taken 9 years to get this bad. I'm sorry to hear it was faster for your daughter. I spend most of my time in bed in a dark room too, with noise cancelling headphones and eye mask at the ready. Luckily I am still able to speak, but I do not know how long that will last.

Not being able to shower is a torment. In the summer I lie on the porch swing in the backyard and my mother hoses me off. In the winter she washes my hair in the kitchen sink. Maybe you can bring your daughter damp washclothes to wipe herself. There are also inflatable basins you can use to wash her hair while she is still in bed. A bedbath may be a possibility on her good days and a visiting nurse can teach you how to do that. Focus on keeping your daughter fed and hydrated. I find pureed soups are easier to eat and digest, as well as a good way to get fluid and salt.

All I can say is, keep trying to get medical care for her. I know this is terrifying and disturbing to see your daughter so ill, and I know that most docs I have seen have been unhelpful. But I figure our only chance is to find a doc that will treat us. It's all lying alone in the dark until then. For some reason, communicating with typing is easier than speaking for many of us. Making cards with her basic needs on them are a good communication tool too, so she can just show you what she needs without having to type.
 

Zebra

Senior Member
Messages
893
Location
Northern California
Hi, @Sizzle

It must be really scary to watch your daughter get so sick.

Are you familiar with Whitney Dafoe's story?

I ask because it might comfort you to read about his experience with severe ME/CFS. Furthermore, his parents' experience caring for their sick son may also be helpful to you.

Just do a Google search for Whitney Dafoe ME/CFS and you should be able to pull up A LOT of articles.
 

Pearshaped

Senior Member
Messages
580
@Sizzle , when I got bedbound, at first it didnt get better, it got continuously worse the following two yrs.
That has often to do with what the patient has done in the months before becoming bedridden (overdoing it with Drs appts and so on) Since end of 2019 Begin of 2020 I got better, especially cognitionwise and I can type now pretty well and my Lightsensitbility has improved.
Please, give your daughter time.
It must be so scray to you but she will automatically do more when she feels better. Its in our nature.
As long as she wont do that, its not time for that ! And then she will become worse which is not what you want.
Please, please, give her time.
I wish you the strength to do that.
I havent any links but googling for Greg Crowhurst and „The stone bird“ could give you sone good infos too about verysevere ME.
 

lenora

Senior Member
Messages
4,960
While Whitney wasn't eating, I do believe that he had (or still has) a feeding tube. This is important...and her doctor should be notified. I don't believe she'll live long on soups or custards, maybe so....but I don't know what her basic condition is at the moment. Besides, you probably won't be able to get her to take them.

Janet Dafoe, Whitney's mother, is his daytime caretaker. Contacting her, on here, may be helpful. Leave a message for her via the Inbox located in the upper right hand section.

There have been some very good ideas. Washing her hair things of that nature may help her. How about changing her sheets? That can be done, although she may fight it.... I hope you have someone who can help.

Yes, @Sunshine 44 may also have some ideas for you. She would share them. Yours, Lenora
 
Last edited by a moderator:
Messages
92
Thanks all,
hard to adress all of the tips and remarks.
Considering meds, she is on a combination of mestinon, propranolol and omeprazol for 2 years now.
Would like her to take less omeprazol, it doesn't feel like a good thing to me to take them so long, but have no way of communicating and discuss the cons and pros. And to stop giving them isn't an option.
About nutrition, the drinking food and abit of fruit should give her at least all she basically needs, no?
Maybe drinking food isn't the right term I use.

Started this thread more because I wondered if I should try more, because like I said, the way it's going now, it's going downhill. And the only thing I have to know this is are the numbers from her smartwatch (hrv/temp/recovery/etc)
 

lenora

Senior Member
Messages
4,960
Gosh @Sizzle, I feel sorry for you and your daughter with the predicament she's in.

No, I don't believe that drinking food and a bit of fruit (how much is a bit?) would be enough to keep her going. True, it could if a food diary was kept, perhaps. I'm not trying to make things harder for either of you, but as a former nurse here in the U.S. I do know that not caring for a patient is something you're legally responsible for. That would worry me....if someone came in and saw the condition of her the way she wants to be left at this time. How bad is her swallowing?

Things like fingernails and toenails are taken into account, as well as dirty hair, bed linens, etc. Now if there was medical supervision involved, perhaps some of that could be overlooked.

It seems to me that the Bateman Home would have the answers to some of these problems. I know how difficult it can be to make a doctor's appointment and carry it through. Ask Bateman's about palliative care...at least someone will be coming in and your daughter may carry out their wishes more than yours.

I'm looking at this from your side as well as your daughter's. Of course my heart goes out to her, but I do think you could bear some legal responsibility. Sorry....truly, I am. Yours, Lenora
 

lenora

Senior Member
Messages
4,960
Hi @Tammy.....I believe that tube feeding has more calories, minerals and vitamins than anything she may take by mouth. I don't know what her eating ability is at the moment. It's not something to be taken lightly, no matter which route is chosen. Yours, Lenora
 

Shanti1

Administrator
Messages
3,294
About nutrition, the drinking food and abit of fruit should give her at least all she basically needs, no?
I think it depends on what you mean by drinking food. If you are blending meals so that she has a complete complement of proteins, carbs, and essential fats or using medical meal replacements and she is maintaining her body weight, maybe that would be enough, but I think it would be worth tracking calories and macro and micro nutrients to make sure she is getting what she needs. You could enter foods into an app like chronometer or myfitnesspal to track nutrients.
 

wabi-sabi

Senior Member
Messages
1,532
Location
small town midwest
liquid food vs getting a tubefeed?
I'm not sure what @Sizzle means by liquid food. A hospital prepared tubefeed (like Whitney's situation) or people in the intensive care unit has been prepared by dieticians to ensure that fragile patients are getting all of the things they need. If that's the case for her daughter, then she will be nutritionally ok.

But if liquid food just means anything pureed that her daughter can tolerate and hasn't been overseen by a dietician, then she may not be getting the nutrition she needs. Some one this fragile needs very careful nutrition, meaning professional help.
 

YippeeKi YOW !!

Senior Member
Messages
16,064
Location
Second star to the right ...
Reacts a bit angry last time I tried something, which is a while ago. So I stopped.
Often, things that should help us cause difficulties, and this might be what your daughter is reacting to, the sense of pressure to try more can, on a spirit already hammered by this miserable, unrelenting little steady jackhammer of an illness, create a mix of fear ("No, no no, I can't risk losing any more of what little I've got....") and anger at her own limitations, at an apparent future that looks pretty bleak, and at the sense of hopelessness that goes along with all this .... it's a release mechanism, a momentary venting ....

You're both going thru some awesomely awful shite, and in many ways, it's arder on you, having to helplessly watch it unfold, like some kind of poisonous plant, slowly taking over the whole garden.

See if you can determine what her pace is, regarding change, whatever that change is, and then match yourself to it, pushing very verygently if at all, just staying beside her as you both feel you ways thru this.

There have be some wonderful suggestions here, tho also some I don't agree with, especially about fear. There are things that just elicit it by their very nature and threat, and the mistake I think is to throttle it or push it down into some deep, dark, internal cavern, where it can fester, increase in size and strength, and grow sharper claws ....
As long as she can get in sufficient calorie intake wouldn't it be better for her to to continue to get food intake orally?
Oh, @Tammy, I so totally, totally agree. Tube feeding is not something to go into lightly unless there's not other option for survival, and it's often the final surrender. Feeding by mouth is a very real connection to your body, to yourself, to the small little worlds we live in to the surprizing ways that taste and texture can feed us, along with the nutrients we take in. Keep finding ways to get liquid feedings into your daughter ..... blend em, or make 'em into soup, smoothies, whatever.
I think it would be worth tracking calories and macro and micro nutrients to make sure she is getting what she needs. You could enter foods into an app like chronometer or myfitnesspal to track nutrients.
These are both excellent choisces, and incredibly helpful when you're trying to find your way and provide maximum nutrition with sometimes minimal intake.

Dont give up .... there are so many good suggestions and so much concerned input here. The trick is to keep your daughter alive, hydrated, and nutritionally sound while things change.

And they will. I was bedbound for over 5 years, I really thought I was going to die, then I hoped I was going to die and then my husband got severely damaged in a freak accident and that's what started the very slow path out, cause even to the very minimal extent I was capable of, I had to be there for him. He'd been there for me for all the dismal painful time ....

And things just slowly, subtly, unpredictably turned around. I managed to stay alive til that happened and your daughter will, too. I wont say you'll look back on this and laugh, but you'll look back on this, shake your heads in wonder, and keep moving up the path to bigger and better.....:):):) :thumbsup::thumbsup:
 

wabi-sabi

Senior Member
Messages
1,532
Location
small town midwest
Keep finding ways to get liquid feedings into your daughter
Yes. I don't mean that eating isn't a better option. I'm concerned that someone as sick as this may not be able to eat enough to get all the nutrition she needs. Mainly I want to caution against assuming that she can meet her nutritional requirements. When you are so debilitated that chewing and swallowing are a chore... you don't want her crashing from the effort of eating.
 
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