• Welcome to Phoenix Rising!

    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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We were meant to live for so much more

Messages
75
Were we not? Look at all the lost potential in here. Just gone. So many missed opportunities.

I want more than anything to be able to work, to be apart of the loop. I hear people complain about how busy their schedules are at work or how little they are getting paid, but they truly don't know how fortunate they are. I wish I could work a 6 hour shift, sweat, and feel a normal fatigue afterward. I wish I could keep up with others around me. I wish I wasn't in pain every day. I wish I had my body and brain functioning normally. I remember what my life used to be and now, more than anything, I just want it back. Easier said than done but what am I to do?
 
Messages
55
Location
River Falls, WI - USA
Easier said than done but what am I to do?

Do the best you can.

Many of us are in the same boat, yet all with different stories and traumas related to this awful disease.
Our disease is poorly understood and is even having a hard time being defined. That being said, we have
each other. Support and community with fellow ME/CFSers is often the most important step we can take
to get through each individual day while waiting for recognition and a treatment.

Keep looking into the various treatments that are posted here on the site, discuss them with your doctors.
Look for other doctors and second opinions until you're able to find treatments that work for you. That is
the hardest part of all - not falling into despair over your body's failings... Hard to not compare yourself to
the "healthy people", I know. Just do your best to do what's right for you. Hang in there! :)
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Were we not? Look at all the lost potential in here. Just gone. So many missed opportunities.

I want more than anything to be able to work, to be apart of the loop. I hear people complain about how busy their schedules are at work or how little they are getting paid, but they truly don't know how fortunate they are. I wish I could work a 6 hour shift, sweat, and feel a normal fatigue afterward. I wish I could keep up with others around me. I wish I wasn't in pain every day. I wish I had my body and brain functioning normally. I remember what my life used to be and now, more than anything, I just want it back. Easier said than done but what am I to do?

How long have you been sick?

GG
 

Ocean

Senior Member
Messages
1,178
Location
U.S.
Do the best you can.

Many of us are in the same boat, yet all with different stories and traumas related to this awful disease.
Our disease is poorly understood and is even having a hard time being defined. That being said, we have
each other. Support and community with fellow ME/CFSers is often the most important step we can take
to get through each individual day while waiting for recognition and a treatment.

Keep looking into the various treatments that are posted here on the site, discuss them with your doctors.
Look for other doctors and second opinions until you're able to find treatments that work for you. That is
the hardest part of all - not falling into despair over your body's failings... Hard to not compare yourself to
the "healthy people", I know. Just do your best to do what's right for you. Hang in there! :)

ArgyrosfeniX,

It's even hard to not compare yourself with the more well sick people in my experience. Maybe it's just human nature, or maybe it's just me. But give advice to just do the best you can and try not to despair. Not always easy to do but we can only do our best.

Livingwithcfids,

I'm sorry for what you're feeling. It really is hard. I go through phases of feeling terrible about things and then phases where it's just my reality and feels almost normal to me because it's just my everyday. There are definitely a lot of downs that come with this illness, especially when it really limits your functionality to a very severe degree. I feel for everyone going through this or something similar.

ETA: meant to say "good advice" not "give advice"
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Those are things I try not to think too much about as its bound to make me miserable. I have some idea where I'd be if I hadnt got this illness, I had so many dreams which I was working to achieve. I was a high achiever. I was studying my dream to get into my choosen line of work when I got this illness. All those "I could of ...... " things.

Instead I now have to focus on other things to bring some forefillment to me. Ive recently got some of my brain back making me capable of learning new things again, so making the most of that in very small doses, hopefully that will last but who knows.. it may be a temporary thing.

Find something you enjoy and try to gain forfillment by growing in that area. That could be as simple as watching a garden throu a window and then looking up the plants seen on ones better days and learning about them if one could develop a garden interest.

A new interest I developed since getting ME has been cooking, I like to at times experiment with recipes or what I see on tv and cook it when Im having a better day.

I also have got into photography and when I see my granddaughter every couple of weeks or so, I love to take her photo and then play around with borders etc online then print it. Ive become very good at making photo books (which Im actually considering I could sell if I get a little bit better).

I do my own personal studies in medical online and at times nowdays seriously consider if I could become a doctor if I got well... maybe if I was well, I'd have an advantage if I went to medical school. (My medical knowledge is quite good due to all the free time I have on my hands, stuck up home and unable to stand much).

Basically Im saying, you may have other areas of undiscovered potential which you now have years to be able to slowly develop esp if housebound.

Thou far harder, even bedbound people need a special interest to bring them some kind of sense of forefillment or life interest (I havent read it but that book "The sound of a wild snail eatting" tells such a story.. bedbound person became a kind of expert in snails).

Maybe this illness is all just another part of our "life" (thou it dont seem like life at times) journey.

If you are having trouble with grief etc over the loss of your past, consider seeing a counsellor.
 

u&iraok

Senior Member
Messages
427
Location
U.S.
Maybe think about what things you have done or could yet do that you wouldn't have done if you hadn't gotten sick? Sometimes achievement is thought of in worldly, selfish terms or in concrete success-type terms. But what about the intangibles? Maybe it's given you more compassion and understanding, maybe you've helped people because now you have the time to do so?

I find this forum to be made up of an incredibly kind group of unselfish carers. Maybe you all were nice before you got ME/CFIDS but I would definitely say this is on a different level. I love coming here. I feel filled up and refreshed instead of deflated and exhausted as the world often makes me feel. And I know the effort it takes to post because it takes a lot out of me, so I know it takes a lot out of all of you, but everyone still does it, to try and help. Would everyone do that if they were well? Maybe they'd be flying from one thing to the next, with no time for an ill stranger or 2 or 3 or 4 or...

Many times it's the little things. If you could watch the, oh what's the word, repurcussions, no, ripples in the water, okay that will work, from a small action and how it can affect a lot of people with a ripple effect you might be amazed. And it's really true that there's more happiness in giving than there is in receiving.

I have a saying, 'Bloom where you're planted' and I take that greatly to heart. It doesn't mean I wouldn't like to be planted somewhere else but it really works in terms of doing the most you can with what you have and where you find yoursef.

And you can't compare yourself to others. I wish I didn't have to work, it's such a struggle, but then I can appreciate what I have in being able to work. Nothing but work and money but money is needed.

Suffering is suffering no matter what scale it's on or how you compare it.

I couldn't go to a dinner yesterday with some friends and one of my friends told my husband to tell me she understands about sickness and dissapointment. My first reaction was, 'Ha, no you don't!' but how do I know? If she's had sickness and dissapointment, then that's what it was. It doesn't matter if it was more or less than mine.

(But it's still difficult, I know. :hug:)
 
Messages
18
I know its too hard to tackle a situation like this, but still I would say you will continue to be in a miserable condition, as long as you think of it.