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Can I get some help with my parents

bensmith

Senior Member
Messages
1,547
Hey guys, my parents are having a TON of trouble right now. I guess my therapist and psychtrist said I need to go to the hospital. Is there anyway I can some of y'all in a chat of some kind in the coming days or couple weeks? They really, really want me to go to the hospital(it's starting to be a force conversation.) And I'm really just not strong enough to defend myself.

I am hoping some of y'all could maybe chat with them in a chat room and defend me on my behalf. I more than anyone want to not be sick, but I know the hospital is a fools errand. I think they are afraid that not taking me to hospital is hurting me, because i did mention suicide to my mom. I will go to the hospital if my dad asks to protect him but I will not be making it back. I am gone from fine to very severe in 3 weeks. I need them on board so can you help them get there? I very much need them to know they are doing the right thing and I can't seem to be able to help them see that. I need help guys, anybody who can please do. I wont make a trip to the hospital, I am just too sick for that. and I know exactly how that will go. and I do not want my parents hurt by my actions. sorry rambling should not be posting.
 

bensmith

Senior Member
Messages
1,547
sorry to double post still can't edit, but i do have a doctor in new york i am trying to see, maybe that will help but that could be some time away still, hope a couple weeks. my dad is a lawyer and has repped some chronic fatigue people but none were as sick as me so i think that is confusing him. not sure if that neeeded to be said but i thought it might help?
 

Rufous McKinney

Senior Member
Messages
13,456
I' m sorry to hear things are so difficult for you right now.

When the energy just doesn't exist- yet there you are...its frightening. It sounds like your parents are trying to help you, and you would welcome the right kind of help.

I about lost it yesterday with my landlord in my kitchen, this mask thing- for whatever reason, and it has to do with huge eye problems I have..unable to breath, choking internally, my throat a mess, I'm visually stifled..in the presence of the Authority figure. I needed 18 seconds of contact and it went on for 20 minutes and today I'm crashing worse on account of- all that.

I think many of us here understand exactly what your feeling. Its just so hard to convey to others who don't have these things going on.

So I'm not sure what it means- Go to the Hospital. What country are you in? Do you have any idea what happened to trigger the abrupt worsening? (which could change, as abruptly, possibly).

It would seem getting to a competent doctor who could somehow address this worsening condition...would be more appropriate than an ER visit (if that is what you mean by Go to Hospital).
 

bensmith

Senior Member
Messages
1,547
@Rufous McKinney yes go to ER, i guess they think I would be admitted but this would not happen I don't think. I am in USA. even if I was to what end? could theyhelp at all?

I am sorry to hear about your land lord, it is so hard to get through this with land mines everywhere! I need better support. i just need empty poop bucket, pee bag, and 2 meals. but they can't see that as ok right now : /

My sister said it was because they think that would hurt me because mental health I THINK is what she said.

I will hope to get doctor in NYC that will be way better.

as far as worsening. Long covid, horrible covid 4 months then 2 months mild cfs now severe cfs.
 

Mary

Moderator Resource
Messages
17,475
Location
Southern California
Hi @bensmith - first, you can edit your posts now - I sent you a PM about this.

About your parents - I saw that your mom posted using your account yesterday. I think it might be helpful if she would open her own account here. That way members can send her messages and discuss problems with her and it won't have to go through your email or your account. Maybe your dad and mom could open an account together? Or individually if they wanted.

This is such a crazy illness, I think it's almost impossible for people who haven't experienced it to understand what's going on. And unfortunately most doctors know next to nothing about it, and very often start talking about shrinks.

I'm glad you're working on seeing a doctor in New York.

You might ask your parents to look at this link from the CDC website re ME/CFS: https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html

https://www.cdc.gov/me-cfs/treatment/index.html

Also, a few links about COVID and ME/CFS - this might help your parents understand what's going on with you:

https://www.the-scientist.com/infographics/infographic-what-is-me-cfs-67806

https://www.medbridgeeducation.com/...-covid-19-long-haulers-the-me-cfs-connection/
 

Rufous McKinney

Senior Member
Messages
13,456
as far as worsening. Long covid, horrible covid 4 months then 2 months mild cfs now severe cfs.

Oh no...thats terrible that COVID got you. Its just possible that it will take you longer to recover due to the challenge COVID is making on so many. Try not to panic. The stress and extra anxiety never help. Figure- you need more time to recover.

So thats really good you may be able to get into see the NYC Doctor.

My understanding is we are mostly not helped- by visiting an ER. But you should get seen soon to make sure there isn't something they can help you with. Your in a very early stage- there may be things a good doctor can help you with.

And i would think that with a COVID- involvement- you'd be able to find some type of further assistance.

I'll cross my fingers some others here have some ideas to help you.
 

Mary

Moderator Resource
Messages
17,475
Location
Southern California
@bensmith - also, you might google Paul Garner COVID - he's a Professor at the Liverpool School of Tropical Medicine and also is affiliated with Cochrane Infectious Diseases - in other words, he's got tons of credibility. And he got COVID last March and has been dealing with symptoms ever since. He used to be very physically active and now it lands him in bed.

So there are a lot of articles mentioning him, there are some youtube videos of him describing his experience, he's blogged about in the British Medical Journal (here's one, there are a few more: https://blogs.bmj.com/bmj/2020/09/0...t-try-and-dominate-this-virus-accommodate-it/

I would show these to your parents. It might help. The best thing they can do right now is educate themselves, because the vast majority of doctors will know nothing about what's going on with you and it really really helps for the patient and their family to be educated.
 

bensmith

Senior Member
Messages
1,547
Thank you all so much I will show them this post and encourage them to make an account here. For some reason she was not keen on it before but I am very hopeful I got through to her know. I just think she loves me too much to accept my life right now.
 

Judee

Psalm 46:1-3
Messages
4,520
Location
Great Lakes
Here is some reviews of klonopin from ask a patient. Some of these were only on this for less than a month: https://www.askapatient.com/viewrat...ction&order=1&Satisfaction1=1&Satisfaction2=1

And Ativan: https://www.askapatient.com/viewrat...ction&order=1&Satisfaction1=1&Satisfaction2=1

I'm showing you the worst ones to show how these drugs can affect you and especially if you have ME/CFS. If you can show this to your parents and/or sister it might help them understand what you are going through.

Then see if they will read this https://www.benzoinfo.com/2018/11/13/benzo-withdrawal-why-i-ignored-medical-advice-and-listened-to-the-internet/.

I really think you need help from people who have already gone through this like other patients. https://www.facebook.com/groups/1849311061751665/?ref=br_rs

http://www.benzobuddies.org/
 
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Judee

Psalm 46:1-3
Messages
4,520
Location
Great Lakes
@bensmith you have to go very gently with your body and your brain now.

I'm going to just recommend one thing right now.

See if you parents will get you some Knutsen Just Black Cherry Juice and give you just about a teaspoon at a time but only for 1-3x per day.

It has natural melatonin and may help you to sleep.
 
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Mary

Moderator Resource
Messages
17,475
Location
Southern California
@bensmith - I urge you to take a look at this thread, which was just posted yesterday: From very severe to moderate in two months -

Martin aka paused had been severely ill for 2-1/2 years - bedridden, had a feeding tube, and since starting a certain combo of drugs (for inflammation), is now moderate. Here's one of his threads where he describes his earlier ordeal: Still very severe
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth

I don't want to throw a wrench in the works, or to overload Ben with too much information, but I do want to mention that some ME patients find Ativan quite helpful, even though it is addictive.

Whitney Dafoe, a severe ME patient, takes Ativan occasionally, and finds it very helpful when he has to be transported from his bed to the hospital.

I have found Ativan extremely helpful in relieving the temporary symptoms of some supplements. Yes, it is addictive, so when these temporary symptoms are gone I gradually reduce my daily dose of Ativan by 0.25mg per week. By gradually reducing my daily dose over a couple weeks I am able to avoid any withdrawal effects.

Of course, everyone is different and your experience may vary!
 

bensmith

Senior Member
Messages
1,547
Wanted to give an update. I think my parents are finallying coming around. Mom is getting in touch with dr levine in new york, if anybody has used her. She is on the ME.net list or whatever. i said lets talk to one ME doctor, then go from there, i think that calmed them. they couldn't not get a doctor involved and pysch wanted to but that is not good. just scared and wanted help/ansewrs as we all do. i feel very sad for them right now, i wish "I" wasn't putting them through this(i know this is not true) my mom said this has broken their heart and it hurts. just more emotional stuff going on inside me as of late. been a very heavy month that is for sure. i think my greiving process is doing ok though, better today then the last two days. couldn't get back to rest. but now trying to again. i really love my family, i miss being with them and seein gthem. i really miss watching basketball with my dad. hope i can again. and running errands with my mom.

thanks everybody for being helpful(honestly thank you, it means a lot), I hink they just had trouble getting here because here is severe. still hoping they get on here tehy will need support and ideas too.
 
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Loomcgoo

Senior Member
Messages
342
It's hard with our supporters. I'm heavily depedent on my elderly Mum and I feel awful about these last two years of hell. I've relapsed 4 times and this time has been the worst by far. It's easily to feel guilty, bad and wrong - even though all of it is beyond our control.

It's easier to blame ourselves and think we are wrong. Rather than sit with the pain and grief of how bad our suffering really is - and that it is beyond our control. Perhaps finding a way to sit with that horror and finding a way where we know we will get ourselves through this - no matter what - will help contain the pain and distress. It might even give us much needed comfort.

In my household we now talk about ME/CFS as an actual thing that has caused so much of our suffering. Placing all of the difficulties, suffering and burden back with ME/CFS means it is easier for us to manage our emotional reactions to it. Being ill like this is one hell of an emotional rollercoaster. It is a real test of endurance and strength of character.

I hope you can recognise your strengths; your analytical skills, motivation to keep figuring out what is and is not helping, your concern for your parents even though you are suffering greatly, being brave and reaching out to people on Phoenix Rising. All of these are strengths that are helping you survive, you'll have many more than just these strengths I've mentioned.

I want to write more to you @bensmith because I am struggling with similar experiences. Unfortunately, I am very limited. You can figure out all the things that will help you get well. Even if the improvement is only 1%, it's going in the right direction. I have made progress, it's very small, but substantial. However, a whole host of other symptoms have started. I feel the game is always changing and the strength we most overlook (one I see very Phoenix Rising Member has in buckets) is the ability to adapt. Finding a way through and weathering the symptom storms is hard. This time round I have found not pushing through the fatigue is crucial. Waiting until my body and symptoms are low level before doing something means I won't cause a crash. At the same time, when it's adrenalin that gives me energy, I have to limit what I am doing. When I keep going when I have a high (because it feels good and I want to surf the web or video chat for an hour) I know I pay greatly for it afterwards. So I give myself a maximum time and try to make sure I don't go over it. I seem to be working from adrenalin most of the time although gradually it has been changing.

May you see your many strengths, may you celebrate your sucesses (no matter how small), may your parents get the support they need to adapt and accept the horrifying reality of this illness and what you go through. May you all lean on each other so that together you weather the gruelling ME/cfs storm. I'm sorry you are suffering so much. I'm glad your are on PR and I hope you get the support you need :hug:
 
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