Now very severe HELP

[Martin aka paused||M.E.]

I am now very severe. Can’t do No thing
Even turning around in bed makes me crash
Scared
What can I do???

 

[Cheesus]

Hi Martin,

I know what this situation is like. I have been there. It is honestly awful. I would not wish it on my worst enemy.

I really wish I had some sage advice that would help you stage a rapid return to your previous level of activity. I am optimistic that you will return to that level - most people who crash this badly do! However, it takes time. Really the best thing you can do now is rest. Listen to your body. If you know how to meditate, now is a very good time to practice.

Hang in there man! This too shall pass.

 

[Countrygirl]

Hi @MartinDH .

I am so sorry you have becomes so ill! I can only echo @Cheesus comments. I too have been there..........again and again..........as have so many of us.......I recall not having the strength or energy to even turn over in bed...............it does eventually improve, but it is hell being so ill. I recall that my dream was to become well enough to sit in an armchair beside my bed for a while. Eventually, I remember the great sense of achievement in being able accomplish that for a whole minute before collapsing back into bed. Slowly, slowly the situation improves, but it can't be hurried. I relied on talking books to get me through as I waited for better times. You may find them of use too. A mobile library delivered them to my door as I couldn't leave my room. Perhaps there is a similar service where you live.

I wish you a very speedy improvement.

As Cheesus says, 'this too shall pass'.....it does in its own time.

 

[Sundancer]

try to not be scared, I've been there, when you get scared you make it worse. ( I know it's hard) Do you have someone to care for you?

Drink enough, a bottle with a straw can help, as you can drink without moving.
Eat fluids, pureed soups, very soft porridge, make it very easy for you digestion.
I agree with @Cheesus , rest. Do not try to do anything that is not absolutely needed.


If you have them, use sups that can lower the stressreaction, for me that's magnesium/gaba/glycine. You'll hopefully know which ones work for you

would that I could help you
much love

 

[andyguitar]

Hello @MartinDH. What you describe is something I have seen many times. It's scary. But it does pass.

 

[Shoshana]

I have been there, too. It took a long time, but I have had some very gradual improvements from that extreme.

Try to be sure you have your basic body needs met. Water, nutrition... when you can.

Perhaps some nutrients in a powder to dilute and drink. Or pureed foods, which take less stamina, to eat and digest.

Anything that would help you to relax or to feel some positive, such as very soft quiet gentle music?

Hang in there!

 

[Martin aka paused||M.E.]

Cant stand up... Not Even a Second ... cant sit... how do you solve the toilet issue?
My parents caring

 

[Martin aka paused||M.E.]

@Shoshana i am too bad for sounds cant hear Music
Today my doc brought me astronauts food to get all nutrients . Has anoybody Tried it?

 

[Shoshana]

I have trouble with sounds and music, also, so I totally understand, and that makes the hours longer,
and allows more fear in.

Was just trying to think of anything that might be a relaxing distraction for you.
Are you able to put things you like into search engine,

and look at the pictures to think about each one?

I have not tried that type of food, but it sounds excellent to try it!

 

[Shoshana]

How long has your movement been so little?
I have been that way,
and still am at times, but when I wait it out, I get a few minutes now and then, that I can get up very briefly,
and with help.

Very glad your parents help you.
But I know it does not take away the misery.

We are all thinking of you!

 

[Martin aka paused||M.E.]

@Shoshana i cant get up with help
Yes i am visualizing nice memories... but it is really hard

 

[Cheesus]

Cant stand up... Not Even a Second ... cant sit... how do you solve the toilet issue?
My parents caring

This is one of the worst things. Eventually I had to cave in and get a commode.

 

[Stretched]

@Shoshana i cant get up with help
Yes i am visualizing nice memories... but it is really hard

‘Sorry to see this so bad. Geez, it’s got to be awful. In commiserating, I think beyond any of my own personal recollections. No advice - can’ think of anything but nothingness.
Maybe old time home remedies could soften the situation, like home cooked chicken soup and some easy upbeat tunes. Take it slow and imagine an open field with
fowl rising on a cool autumn morning... . That will be you, soon.

 

[Gingergrrl]

I am sorry to hear this @MartinDH and hoping you start to feel some relief soon. I was curious about the astronauts food that you said your doctor brought you. What does this involve? Were you getting allergic reactions to food?

Please forgive me if I have confused you with someone else, but were you the one who said that when your psoriasis was better, your other symptoms got worse or you would crash? If so, is that the case this time, too? I was always curious about this from an autoimmune perspective and what it might mean?

 

[Wayne]

What can I do???

Hi Martin,

Sorry to hear how difficult things are for you, and I wish I had some answers for you. It seems we all have certain things that help us, but that are not pertinent to another person with CFS. When things get difficult for me, my main goal is to try to stay calm; to somehow maintain an equanimity. We all have our own ways of doing that, but it seems this dreaded disease is always sending us off into uncharted territory. I wish you the very best as you work your way through these trying times. ​

 

[mrquasar]

Cant stand up... Not Even a Second ... cant sit... how do you solve the toilet issue?
My parents caring

One solution is a bedpan, which would require someone to roll you on your side to put it in place for you to use. https://www.wikihow.com/Position-a-Bedpan. The other solution I read from another very severe patient was using a large heavy duty trash bag while lying/sitting on the edge of the bed.

 

[Martin aka paused||M.E.]

I am sorry to hear this @MartinDH and hoping you start to feel some relief soon. I was curious about the astronauts food that you said your doctor brought you. What does this involve? Were you getting allergic reactions to food?

Please forgive me if I have confused you with someone else, but were you the one who said that when your psoriasis was better, your other symptoms got worse or you would crash? If so, is that the case this time, too? I was always curious about this from an autoimmune perspective and what it might mean?

I am too weak to eat. Its called fresubin
Yes I don’t have pso since last year

 

[gregh286]

jees sorry to hear that.
i dont know if prednisone is relevant or advisable in your case, GP can advise you, but it helped me in bad times, but it can make others worse.
hopefully this bad time passes soon for you.
Warm wishes.

 

[MEPatient345]

@MartinDH Im afraid I don’t have any great advice bc there is nothing to do but wait it out. Do you know why you suddenly worsened? I read some of your older posts and you had been q active before, do you think you overdid it? I did that in my first two years and ended up bedridden. The only thing to do is accept where you are and take all the help from your roommates that you can, and rest rest rest. You kept saying “I have to get out of this crash” in earlier posts.. I think it’s important to not rush it, and let go of that drive, as you may end up overdoing it.

i hope things ease for you soon.. we are all here for you..

 

[maybe some day]

It will let up, but it certainly is overwhelming. Small steps at a time. Can you sip Ensure? Its a nutritional drink that may help if its too hard to chew food