want to give up

[ABCFS12]

I am so sick. All of my symptoms are back to the point of non function. Severe nausea, can barely move my body. Everytime I try to close my eyes I am jolted awake by a dropping adrenaline feeling. Feels just like I did in the beginning but worse. Hysteria, muscle twitching. Feels like the valcyte has caused a relapse with a virus? Is this possible? How can I be going so far backwards? I don't want to live like this anymore. I have fought so hard for so long. Too many viruses, infections. This is not worth it. Just last week I was able to function a little bit. This week its all gone. My nervous system feels like there is electricity running through it. Its too much. I'm only one small person, I have no more fight left in me

 

[Carrigon]

I'm sending you a virtual hug. I'm in the same boat. With me, some bad new virus got me and I've been down for a month. And nearly every day now, I just want to die and give up or sit and cry. It's one thing to be sick all the time with our illness, but when you get something on top that destroys even the tiny bit of function we do get, it's just cruel. You are not alone. There's alot of us who are very, very sick.

I was thinking all day how our homes just go dark like the old plague victims of centuries ago. We get sick and just disappear from the world. My neighbors think it's weird that I don't go out and they don't see me for weeks on end. No one understands that I'm too sick to be a part of the world.

I wish I had happy, encouraging news for you. But I really don't. All I can say is, you are not alone. And I don't know why this is happening to us.

 

[maryb]

I'm so sorry both of you are going through a bad time, stay strong, I hope it passes quickly and you're soon feeling a bit better. It must be so hard to cope on your own, you are both very brave people, far and away more brave than those who doubt the seriousness of the illness.
Believe that the future will get better for us all. take care of yourselves.

 

[Riley]

Hang in there! I am in the same boat. I have been bedbound in a dark room for two months now, and I am only 25 years old. Just take it one day at a time and try to keep hope alive.

 

[Gamboa]

I am so sick. All of my symptoms are back to the point of non function. Severe nausea, can barely move my body. Everytime I try to close my eyes I am jolted awake by a dropping adrenaline feeling. Feels just like I did in the beginning but worse. Hysteria, muscle twitching. Feels like the valcyte has caused a relapse with a virus? Is this possible? How can I be going so far backwards? I don't want to live like this anymore. I have fought so hard for so long. Too many viruses, infections. This is not worth it. Just last week I was able to function a little bit. This week its all gone. My nervous system feels like there is electricity running through it. Its too much. I'm only one small person, I have no more fight left in me

Please, please don't give up. I really believe that there is a better future for us and that it is coming soon. I myself haven't felt very good the last few days so couldn't follow all the NIH conference but from what little I saw I can conclude that things are moving along quickly. I know it's not quick enough and we all want answers right now but unfortunately science can only move so fast. I was so pleased to see the lineup of excellent scientists and doctors who are all trying to help us.

I wish I could go to your home and help you, hug you, and make you feel better. Since I can't all I can do is send all of you a big hug and tell you to keep strong. You CAN do it. Things are going to get better.

 

[Grape Funk]

ABC fyi, in many cases Valcyte has caused exacerbation of symptoms before any relief, especially in the more severe cases. You might have already known that, but i'd wait it out for 3 months at least. One love.

 

[Boule de feu]

Last month, I went from 40% functional capacity to 25% (in only a few days). I could see myself going back to square 1 (five years ago).
After ending up in my GP's office (emergency appointment), he ran many tests to see what was wrong with me. I caught a virus which caused a severe
relapse. I thought I would never come out of it. It felt like I had food poisoning and bronchitis at the same time. It lasted 33 days.
I have been functioning at 35% for the last few days, but I feel that if i'm careful enough, I will make it back.
Relapsing is tough because it takes you a lot longer to climb back where you were prior to getting sicker.

My only advice to you is REST as much as you can. This means NO INTERNET for a while.
It did work for me. It's not only your body that needs to rest, your brain too.

 

[m1she11e]

I have woke up many mornings with this sense of dread that I just dont want to get up and fight through the symptoms for one more day. I dont want to be uncomfortable, I dont want to try to keep my morale up, I just dont want to fight the fight anymore. I am too tired mentally, physically, and emotionally to deal with all of this health crap anymore. DONE!!

Sometimes I think that we are some of the strongest people on the planet. I often wonder what keeps so many of us pushing on. I have been sick for 29 years. Some have been sick even longer. The only reason I have not "checked out" is because of my two daughters and my mom. When I think of the heart break they would feel I cant bare it. That is the only thing that feels worse than living with this illness. SO, I cry and punch and kick and scream at God and the world at least every couple of months. After crying to exhaustion, I usually fall asleep and when I wake up I realize I have no choice. I have to continue on.

In these 29 years the one thing I have learned is that this illness cycles. Just like when I think I am doing better, I have to deal with a crash that hits me out of no where. The flip side is the doing awful and thinking it is down hill from here and suddenly waking to days that are bearable again. I just really try to tell myself there will be better days again. I know it gets hard when a year or more has passed without one single decent day. Ive been there. I did go from mainly housebound for a year to working very part time now. I couldnt even sit up long enough to eat a year ago and now I see clients (I do facials) a couple hours, a couple of days a week. My point is, most of us do recover to some degree from even the lowest lows.

Advice? I dont know that I believe that rest has ever helped me. I rest because my body wont go on, not as part of a treatment. I have taken hundreds of thousands of dollars in supplements but cant say they have helped me. I have never really understood the times Ive gotten really sick or the times Ive been more functional. They dont seem to have a rhyme or a reason. I do try to take very good care of myself because it is common sense but I cant figure out anything that helps or hurts me.

I think we cope how ever we can. We we hope and we wait for the better days. Thats all we can do.

HUG...

 

[ixchelkali]

I'm sorry you're feeling so awful. It's so hard to be hopeful when you feel that bad. But couldn't it be a Herx reaction? I've heard so many people say that when they started Valcyte they felt much worse for two or three weeks before they started to improve. Hold on, hold on. You have to at least find out if this is a sign it's working.

And you know this crud can relapse and remit, so hold on. You're not alone.

 

[Boule de feu]

WE ARE the STRONGEST people on earth.
And, you are too, ABCFS! Stay strong.

 

[Alexanderbell]

Hi,,,
First of all get out of this desperate state.
Severe nausea really needs urgent treatment.I advice you to please consult a good medical specialist for proper treatment.He is the best solution to your problem.

 

[*GG*]

Such a sad but inspiring thread all in one. Look here researchers for a good reason to do some research and help some truly desperate people who are hanging on by threads! I had a really bad spell about 1.5 years ago, massive pain, but I could still be pretty mobile.

GG

PS Thanks for the inspiration of all contributors of this thread, I realize I have it bad, but obviously others are worse off than I am, you inspire me!

 

[m1she11e]

Hi,,,
First of all get out of this desperate state.
Severe nausea really needs urgent treatment.I advice you to please consult a good medical specialist for proper treatment.He is the best solution to your problem.

Just curious Alexanderbell, do you have CFS? For many of us sever nausea is just par for the CFS/ME course. If I ran in for Urgent care every time I had severe nausea I would be there every other week. SIGH...

 

[Boule de feu]

Same here. Constant and severe nausea for the last five years.
Doctor tried everything. Nothing works.

 

[taniaaust1]

Im wondering if you've asked your doctor if you can try any anti nausea pills if you havent done so already. IF that is possible to treat, you may feel a bit better. (I take prescription anti nausea pills at times)

**gentle hugz**

 

[Nielk]

I'm so sorry you are feeling so lousy. Remember we talked about Dr. Enlander saying that if you have a strong adverse reaction to Valcyte in the beginning that means that it's working and doing it's job. Do you thing the terrible nausea is a side effect of the Valcyte?or maybe it's from the antibiotic that I seem to remember the Doctor put you on. It must be terribly frustrating to try a new treatment and to start feeling worse. I think though if you can toughen up a bit and like the others suggested, get something to help with the nausea, I'm hoping that soon you'll take a turn for the better and start feeling better and bettor. Meanwhile try to hang in there. I am thinking about you and am wishing a quick turn for the better.

Nielk

 

[liquid sky]

I had a friend with cancer who suffered from severe nausea and wasting. She tried all the prescription pills with no help. In the end, she tried medical marijuana and it gave her an improved quality of life. At least, she was able to enjoy eating once again. She passed about a year ago.

Sorry for your suffering and I hope you catch a break soon.

 

[*GG*]

I just watched "I remember ME". I shed a few tears, some heart wrenching stories, just like on this website, but in Video.

GG

PS Interesting to see Dr Peterson and Klimas, Klimas looks much different now to me.

 

[sleepy237]

ABC, hang onto HOPE. You are not alone. I think we all go through those dark moments. In fact with an illness like this I think there'd be something wrong if it didn't affect us. You mention an adrenaline drop. If you are being stressed/stimulated by anything causing adrenaline except for the illness/your reaction to it, try to take charge of this. I know that in the last three weeks I have dealt with adrenaline surges arising from a couple of new situations in life, and it did produce intense nausea and vertigo along with a burning skin sensation, so I have learned what adrenaline does to me. Avoid it at all costs. We need to heal and overproduction seems to stimulate the nerves more, possibly reinforcing some of the symptoms you are experiencing now. Even good adrenaline is bad for me and that has been painful to acknowledge recently. I was given an anti nausea/vertigo pill called stemetil and while i hated taking it it did dull down the symptoms and helped the nausea die down. Don't give in, others make some level of recovery, try hang onto the positive input and that while it doesn't feel like it, It CAN get better. Take care ~Sleepy