Now very severe HELP

[Martin aka paused||M.E.]

@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..

Definetily overdid it. this crash came bc I crashed during a crash... I am just lying here having my eyes closed the whole day to not crash. Might that help?

 

[Martin aka paused||M.E.]

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

Think it is like astronauts food

 

[jesse's mom]

I am so sorry you feel so bad! Ensure is good for me.
Also i listen to podcasts on SoundCloud. The ones that carry me through meditations are helpful and the guides/ teachers usually have soft soothing voices.
I also listen to Dharma talks on there.

 

[andyguitar]

Fresubin is used for those who have problems swallowing. It's good stuff and will keep you going. A relative of mine lived on it for about 2 months after having a stroke.

 

[Martin aka paused||M.E.]

I am so sorry you feel so bad! Ensure is good for me.
Also i listen to podcasts on SoundCloud. The ones that carry me through meditations are helpful and the guides/ teachers usually have soft soothing voices.
I also listen to Dharma talks on there.

Cant listen to podcasts cant tolerate Any sound

 

[Martin aka paused||M.E.]

This crash came because I went to the toilet on monday without wheelchair while having a crash... is there any chance it wont last long ... i want to be able to talk again... days are loooong

 

[andyguitar]

Very hard to say how long it will last Martin. Your chances of it being over in a week or so will be much better if you have total rest. No stimulation at all. Bit like hibernation. And if you are taking any stimulating herbs give them a rest. Stimulation does not just come from outside. Also from within. Everyone here is with you, and we all know you will be back.

 

[Martin aka paused||M.E.]

Thank you all

 

[MEPatient345]

Definetily overdid it. this crash came bc I crashed during a crash... I am just lying here having my eyes closed the whole day to not crash. Might that help?

Yes. I think a lot of that is in order for you for the next long while. I was never so bad that I couldn’t get to the bathroom. But I did spend most of 4 months in a dark room and only whispering to my family to control symptoms. It’s awful and it can last a while, but the best thing to do for yourself is just that.. rest, don’t speak, protect from sound. Text people for support. Just wait it out and eventually you will improve. I would advise to not let them take you to hospital, in case your roommates are considering that, if they are frightened for you. the noise there would be overwhelming and they prob cannot help.

Hang in there.. be patient. Take meds if you need to. I have always found codeine and ativan help my wiredness, headaches and sleep, but small doses.

 

[TenuousGrip]

I'm so sorry, Martin. What a horrible and frightening thing for you to be going through.

Es tut mir leid.

 

[PracticingAcceptance]

Sorry you're feeling so bad
It will pass!

Stimulation does not just come from outside. Also from within.

I have found this to be very true... I've found crashes go away faster and more pleasantly if I don't get upset and frustrated, and just relax into it as far as possible. It's taken me time to learn to do this, because I was so demanding of myself. I understand that you have high standards for yourself too, right? You're ill, so you're allowed to let yourself not be demanding of yourself right now, in order to relax, in order to get better quicker.

It can be scary to know what it's like to be this ill. hope it passes very soon for you. x

 

[Gingergrrl]

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

How are you doing with the Fresubin? I have never heard of it before your post. It is interesting re: your psoriasis being better (or gone?) when you are in a crash. There must be some autoimmune mediated connection although I am not smart enough to figure it out.

Fresubin is used for those who have problems swallowing. It's good stuff and will keep you going. A relative of mine lived on it for about 2 months after having a stroke.

Andy, is Fresubin a European product? I know Martin in Germany and I think you are in the UK? I don't want to sidetrack the thread but my mom is unable to eat food any more (from cancer) and I am wondering if she could tolerate this product. I will Google it shortly but was curious if you know more and it sounds like it really helped your friend who had a stroke (and hopefully is helping Martin, too).

 

[Mel9]

Think it is like astronauts food

I looked it up and it seems that Ensure is milk based. If you, like me, cannot tolerate milk, you could try pea protein instead.

 

[Mel9]

There is an old thread here 'Aggressive rest therapy' that might be useful

 

[Martin aka paused||M.E.]

Yes. I think a lot of that is in order for you for the next long while. I was never so bad that I couldn’t get to the bathroom. But I did spend most of 4 months in a dark room and only whispering to my family to control symptoms. It’s awful and it can last a while, but the best thing to do for yourself is just that.. rest, don’t speak, protect from sound. Text people for support. Just wait it out and eventually you will improve. I would advise to not let them take you to hospital, in case your roommates are considering that, if they are frightened for you. the noise there would be overwhelming and they prob cannot help.

Hang in there.. be patient. Take meds if you need to. I have always found codeine and ativan help my wiredness, headaches and sleep, but small doses.

Wow ... I cant take for month

 

[andyguitar]

If I remember correctly @Gingergrrl Fresubin is made in Germany. It's use over here in UK is pretty standard for people who, for medical reasons are unable to eat normally. It's quite costly but we get it on the NHS. There must be something that is basically the same in the US. I could well be very helpful to your mum as it contains all the nutrition ie vits/mins/fatty acids and calories that we need. Company is called Fresenius Kabi. They have a branch in US.

 

[Martin aka paused||M.E.]

If there wont be any improvement in the next days it will Drive me crazy... im feeling ok as long as I keep my eyes shut and think of positive things... but when I open them or move I get weird and weak... it’s the horror... I really cant do Nothing

 

[andyguitar]

Yes it's crap and even opening your eyes will make things worse as it is stimulation. Your body wants to shut down for a while. Dont fight it.

 

[MEPatient345]

I remember that feeling.. it’s like suffering every second, and every ten minutes feels like an hour. But just hold on, you have to and you will come out the other side eventually. Maybe it will not take too long. You will discover that you’re stronger than you even think.

 

[Gingergrrl]

If I remember correctly @Gingergrrl Fresubin is made in Germany. It's use over here in UK is pretty standard for people who, for medical reasons are unable to eat normally. It's quite costly but we get it on the NHS. There must be something that is basically the same in the US. I could well be very helpful to your mum as it contains all the nutrition ie vits/mins/fatty acids and calories that we need. Company is called Fresenius Kabi. They have a branch in US.

Thank you so much, Andy, and I just bookmarked your post. I am wondering if Fresubin is comparable to Ensure or Boost (in the US) which are not great products IMO and my mom cannot drink them. We were getting her to drink a product called "Orgain" instead but it has too many ingredients that do not agree with her. She may just be unable to eat any more and the one food she tolerates best now is just drinking milk. I will look into this product (Fresubin) and learn more about it. Thank you again (Martin and Andy) and I really appreciate this info.