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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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It's worth living like this?

eric_gladiator

eric_gladiator

Senior Member
Messages
210
I'm not 30 yet, and I already feel like I'm 80. I have a hard time walking, I make a very sedentary life. The real thing is that I no longer know what it means to have this life depending on my parents, without anyone understanding you, without economic support, without medical support ... and just to see other people how they make their lives, the really easy That they find to do the life and I meanwhile sunk in this misery of disease
 
Marigold7

Marigold7

Senior Member
Messages
430
HUGE HUGE hugs from wet and foggy Ireland.. and YES it is worth living. What a question! I have learned different values and different ways than others. PS I am heading for 80 and you have NO IDEA what this is like!! Nor did I when I used to say things like that and now it has come back to haunt me!!!!!Blessings to thee from here...
 
Mohawk1995

Mohawk1995

Senior Member
Messages
287
Eric,

Thank you for being real and honest. One thing I can tell you is that people with ME/CFS do not have time to be otherwise. That in and of itself is refreshing and one reason I stay in contact with this web site.

There is hope and the science is getting closer every day to having some answers for this disease. Our son is now 4 years in recovery and doing very well. I have chronicled his journey on other posts. We definitely know we are among the fortunate few and still we have to work to keep the priorities of family, friends and faith at the top of our list.

There is no other way to say it than this disease sucks! It is way beyond anything I could have ever imagined especially those with severe cases. Please do hang in there and try to keep remembering that you have value because of who you are and not what you can do! We live in a world that places such high value on what people can do from athletes, to entertainers, to politicians, to business leaders and more. That doesn't make it easier either!

Know that there are more people here that are for you and keep placing one foot in front of the other. You are braver than many others who the world holds as brave if you just keep doing that! Your profile name is then fitting ;)
 
trishrhymes

trishrhymes

Senior Member
Messages
2,158
And a hug from me too:

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As a mother who has ME and has looked after my daughter, now aged 36 since she go ME at 16, I'd say, please, hang in there.

We hang on to the hope that there will be a treatment one day. I have had to watch my daughter miss out on education friends career and all the things you and she might have expected. It's so unfair. But there is still the possibility of finding small bits of pleasure in daily life. Please don't give up.

Do you have any small things you are still able to enjoy, or at least find a passable way of spending the days? We both find listening to books on audible helps pass the time - though I confess I keep having to go back a chapter as I've fallen asleep or lost concentration - makes the book last longer!
I find small creative things help too - I sometimes lie in bed making up silly limericks - there's a thread on here where people share them!

And it's OK to be grumpy too. I hate it when people tell me to count my blessings or think positive.

I'm one of those contrary people who is allergic to being told to smile, but I laugh at grumpy cat:

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Sorry, this is probably not helping. I wish I could wave a magic wand and make you better. I'm relying on Ron Davis or one of the other fantastic researchers to wave their magic wand sometime soon and make us all better.

Love and hugs, Trish
 
E

erin

Senior Member
Messages
885
I feel for the young ME patients more. It is very restrictive and of course you're young, you want to do tons of things, venture. It is very difficult but in my opinion it's worth every second of it. Even the miserable times you want to delete out. Because you do get a bit better eventually and then you appreciate. You also appreciate nice people around you who really care. They give without thinking. In your case your parents. You understand the meaning of love, giving and taking. Not easy but worth it.

I agree @IThinkImTurningJapanese, there is no easy life.
 
Hilary

Hilary

Senior Member
Messages
190
Location
UK
More hugs for you @eric_gladiator - this is a horrible, horrible disease and I'm having a spectacularly rubbish day - BUT....... there are wonderful, knowledgeable, supportive people on here who do understand how you feel. AND there is more genuine hope now than there has ever been, with brilliant researchers like Ron Davis and Robert Naviaux on our side - and I do believe they will not be giving up until they have the answers. hang in there.
 
A

AdamS

Senior Member
Messages
339
I'm 25 so can relate to what you're saying. I slip between wondering whether it's worth it or not most days, it's intensely frustrating. I feel like I have two lives, my healthy past and my unhealthy reality - living between these two states is tough on the mind. Managing the boredom/isolation that this illness brings is also a challenge, as is losing abilities we're so accustomed to having.

I'm just trying to keep going until there is a treatment/cure. I'm very interested in finding out what the mechanism for ME is and can't wait for the day that a thread is posted on here with a decent biomarker/treatment/cure. Keep going!
 
Marigold7

Marigold7

Senior Member
Messages
430
I thought there was a marker found; a test on mitochondria? What happened about that, please? This was known even before I left the UK which is 16 years ago.
 
A

arewenearlythereyet

Senior Member
Messages
1,478
It's rubbish sometimes. I have very low moments too. When I'm low like this I try and tell myself it's just a symptomatic mood swing (I'm allowed these....it's part and parcel of our screwed up biochemistry!) The next day I normally feel a bit better. I like looking at trees and nature ...it somehow makes me feel more alive. Even better if the sun is shining.

Research will help us get out of this and there is hope that treatment is around the corner. We just need to keep surviving this sick roller coaster until that day. Best wishes.
 
A

AdamS

Senior Member
Messages
339
@Marigold7

Some researchers have found novel biomarkers or tests that can diagnose ME with relatively strong accuracy but as of yet a disease mechanism and cheap/accessible test for ME isn't available in your regular doctor's office, it's a diagnosis of exclusion.

If you're referring to metabolic profiling or metabolomics testing that is usually carried out Metabolon or other specialist labs I believe and isn't easily accessible (at least I don't think). Mitochondria and enzmyes related to pyruvate catabolism have been found to be involved in ME/CFS recently though as you suggest. Sarah Myhill talked about mitochondria a while back too so you may be referring to her testing.
 
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gabriella17

gabriella17

Senior Member
Messages
165
Location
Phoenix, AZ
@eric_gladiator While I can't know exactly what you're going through, I've struggled with thoughts of suicide. I think one of the most important things that helps is to have a good support network - support groups, counselors, etc. If you are able to find even just one person who can listen and validate how you're feeling instead of judging, one person you can just turn to when you're feeling completely alone, someone who will just be there when you need to cry, it would make all the difference in the world.

Try searching online for "warm line" in your area - it's a free service for people who are having a difficult time and just need to talk to someone who will listen. Also, there's 7cups, a free online support service
 
valentinelynx

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
Mohawk1995 said:
keep remembering that you have value because of who you are and not what you can do! We live in a world that places such high value on what people can do
Click to expand...

Very important! I don't know if this is as true in other countries, but in the US, you are what you do. Typically, the first question a new person you meet will ask you is, "What do you do?" We are 100% defined by our vocations or jobs. People on disability are considered to be malingerers. Once you reach a certain age, you can say you are "Retired," but that will just beg the question of "What did you do when you were working?"

This is extremely discouraging to people who cannot work for whatever reason. They essentially have no identity in our culture: they are no one. The idea that people have intrinsic value is kind of a radical left-wing notion here. Yes, despite being a radical left-winger, I am still subject to self-castigation for not "living up to my potential." Occasionally, I'll think to myself that I deserve some kind of medal for doing what I have done despite my illness. On the other hand, maybe if I hadn't done it (finished medical school & residency and continued to work part-time) I might have gotten better long ago?

Truly I do believe that all people have intrinsic value and rate love. Even ones that do bad things.
 
Marigold7

Marigold7

Senior Member
Messages
430
The problem is that "modern" mental health theory aims for a smooth, bland, always happy even state that is so unreal. In my mental hospital days there was a saying among the nurses, " If it moves, drug it; it is doesn't, give it ECT" Ups and downs are seen as unhealthy, abnormal. To be "treated"and hence the preponderance of psych DRUGS . Smooth it all out, learn no coping skills... Add no character or growth. . I have learned endurance and joy as well as near despair in my nearly 5 decades of this illness.
 
M

msf

Senior Member
Messages
3,650
It might not be worth it now, but it will be, and it won´t be that long judging by the level of research now going on in ME. The same couldn´t be said of any time before the 2010s.
 
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