Has time spent malnourished delayed recovery? How long will recovery take from this?

[SpinachHands]

My partner is very severe after a crash/rapid decline nearly two months ago. They have only been able to eat through a straw since then as chewing and feeding themself is too exerting. At the start I asked our GP for a referral to a nutritionist/dietician, but she said it was fine as long as they were having the same amount of food as usual. Turns out I should never have listened to her (ME 101: never 100% trust your GP), as two weeks ago I broke down all the details of what I was currently feeding my partner and turns out it was only half the calories they need. We think this is why they have PEM for half the day, every day, and why they have shown no improvement, potentially even gotten worse, despite doing literally nothing (no sitting up, using phone, I haven't even been able to brush their teeth in a month).

But now my partner is distraught thinking that the past two months of rest were all for nothing where they have been malnourished. Even while they weren't improving, I was assuring them that all the rest and time was going towards recovery from the crash as their body healed. But if they were still in energy debt from insufficient nutrition, then was all that time meaningless? They keep asking me if now their diet is where it should be, is this now "day zero" of recovery? Have all our estimates of when they should improve been pushed back two months?

I think we're just struggling most with how to view things with no real guess on the timeline. In the first few weeks I would say "this is a crash, people normally start seeing improvement within days/weeks, I think you should be able to do xyz by this date..." But every single one of my guesses have been wrong. I told them "I think you'll be well enough for me to change your t shirt tomorrow" a month ago. And now this with me messing up their nutrition?

Sorry this is rambling, I'm just really lost, and they ask me so many things I don't have an answer to, and I don't want to guess any more because I keep letting them down. Is there any way to estimate recovery? Was the last two months of rest for nothing?

 

[hapl808]

Even while they weren't improving, I was assuring them that all the rest and time was going towards recovery from the crash as their body healed. But if they were still in energy debt from insufficient nutrition, then was all that time meaningless? They keep asking me if now their diet is where it should be, is this now "day zero" of recovery? Have all our estimates of when they should improve been pushed back two months?

I don't think so. For me, a perfect diet and pushing myself will make me much worse than an imperfect diet and adequate rest. I've spent decades perfecting my diet and macros and other than specific 'bad' foods, it makes much less difference than I thought.

It's normal for them to improve eventually, but my own suggestion is don't make guesses. I personally hate when people do that - because then I'll be upset when they're wrong. Eventually I start getting upset when they make the guess, because it feels like it's to make them feel better.

This disease is horrible and unpredictable - so do the best you can and try not to make any predictions. The last two months of rest were definitely not for nothing. To a degree, calorie restriction often seems healthier than excess calories - I've done multi-day fasts that helped me. I can understand their panic at not improving, but unlikely it's connected to food.

Unfortunately, being panicked about improving can itself make me worse. But also let me assure you that you didn't let them down. My partner disbelieved the severity, her and my friends kept pushing me to do more thinking I was 'afraid' of activity, then when I crashed worse, they just bailed. I would've given anything for someone supportive enough that they believed me and were reaching out to knowledgeable people online to see if they could help me. She only went to one of my doctor's appointments when she thought she would catch me in a lie (I only realized that later - just thought it was weird she only went to one appointment).

So that's my return ramble. I have nothing good to suggest. Hopefully they improve soon. You're respecting their limits and not pushing them. That's the most important thing - far beyond calories or anything else. The more they can rest and relax (easier said than done) the better. That's all I got.

 

[CCC]

As hap1808 said, we don't measure success by elapsed time either. It's never a waste of time to be cared for and do the caring. And things can change so much from day to day and week to week. There is only the next day - no day zero.

As for calorie needs, in Australia at least, you can see a dietician without a GP referral.

I'm told by a local dietician that good resources in Australia for high-calorie (fortified) liquid diets are on an Australian Government website called NEMO. Two good resources are:

• NEMO HEHP Recipe Ideas for Puree, Minced Moist and Soft and Bite Sized
• High protein high energy drinks

These links open PDF documents you will need to save to your computer.

NEMO stands for nutrition education material online. It's managed by Queensland Health - the health department of an Australian state government.

 

[Treeman]

For me resting and pacing are the most important things I ever did/do. I've never had a problem eating and put weight on easy so I guess it was the extra calories my body didn't need. I now eat around 1000 a day and don't put weight on or lose it.

Being patient and kind to myself are also super important. Stress will only burn energy very quickly and lead to crashes. Acceptance of my situation was important, it's certainly not my fault or my partners that I'm ill.

Good luck.

 

[sunshine44]

This is a brutal illness with infinite learning curves. I am severe (fully bedbound and bathed from a bed by others) and here is one thing you need to know…. You didn’t cause this. No matter what stories your brain tells you about malnourishment etc. I’ve done the same with myself.

I am on puréed foods again this week. Barely. After improving for so long …and now my liver and adrenals kidneys pancreas are so mad, swollen and awful just like my old everyday. And I have theories but ultimately… it’s yet another unknown battle.

And, you are an amazing human for even taking this on 100% AND being concerned of their feelings. Speaking from someone whom does not have that, I am mostly dependent on volunteers that read my story in a newspaper article (strangely enough) because my situation has mostly been too much for my family and friends.

You are a beautiful human. Please give yourself grace. Can you hire help to give you breaks at times? Or a volunteer? I know if feels impossible like what if they make a mistake and make too much noise and crash them etc…. But it’s vital you take care of yourself through this too and tend to the trauma you are enduring as well. You matter. Your partner matters.

Sending you each love on this grueling journey. You are doing an amazing job.

Ps. Look into experimenting with liquid vitamins and supplements when severe. Go slow and research what you are needing but it vastly improved me when I was close to death. I do have a blog or thread on it somewhere here. At one point, I had mast cell throat mouth and other reactions to most anything. Even a drop of probiotic in my mouth. Or a drop of ascorbic acid vitamin c on my skin! I built up and went very slow with how I rebuilt my body after so much malabsorption and malnourishment. It wasn’t a cure of course but it certainly improved my situation. Anyways, I was able to bring my vitamin b levels from under 400 uti over 1000 just by a plain b complex liquid formula on my skin. Other stories with this as well
Pertaining to other vitamins in me.

I believe in you guys.
You will find your way.