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

    To become a member, simply click the Register button at the top right.

The Unseen

My new neighbors are already commenting on how they never see me.

All those boxes I unpacked when I moved in here, I destroyed my lower back doing it. So now, I have a loose SI joint, where every time I move the wrong way, I'm getting severe sciatica on the right side. And even when I don't get the sciatica, I'm getting low back pain, and the joint just moves all over the place. It's bad. So, between the muscle relaxants and pain killer and doing exercises to try to strengthen the surrounding muscles, no one is gonna see me for months. It's so frustrating. I didn't even realize how badly I injured my back. I thought the low back pain would go away, but instead, it went into this. Also, my ankles and feet swelled up. More so, the right one. And my right hip keeps dislocating along with the SI joint. I'm a mess, with new heights of pain.

The most frustrating thing is, I made myself better in other ways. I made the POTS severe lightheadedness and weakness alot better. I'm not getting the attacks as frequently. I can stand longer, I can do more. But now I'm all crippled up from the back stuff, so any progress I made with CFIDS is out the window for now.

I just feel bad when neighbors comment. Like I'm choosing to stay in.

This disease steals so much life. So many life experiences. I've had people ask me recently, what would make me happy. And I'm like, well, give me back my health, let me be able to actually have a life again, and then ask me later. I'm just never going to be a happy camper with this disease. I've coped, for about twenty years, but happy, no, not really.

I want the things that have been stolen from me. The ability to work and to feel successful at my job. The ability to date, get married, have children. I'm not going to have that. I'm getting older. I've been sterile a very long time from this disease. And I'm never well enough to really date or have a real relationship. I can barely take care of myself and my cat. I want a normal life. That's what would make me happy. I'd like a boring as cardboard normal life. I want to wake up, not be in pain, go to my boring job, or maybe a not so boring one, work all day. Socialize with coworkers, go home to a husband and children. And spend weekends with my family, the one I have never been able to have with CFIDS. The one that was stolen from me. My children will never be born.

People just don't realize what we lose with chronic, long term illness. Everything is gone. Friends I had before I got sick, all gone. My phone doesn't ring. I don't get to go to parties or weddings or anything. I don't get to go to holiday parties or clubs, nothing. I don't get to enjoy any kind of social drinking, can't drink, the disease has made me intolerant to alcohol, and pretty much anything else that's actually relaxing and fun to do with friends.

Money is all gone. I even found myself with a bare fridge last week. The move financially killed me. Can't afford to breathe or eat now. But the disease already really took care of that. I haven't been able to afford to do anything for a long time.

It's bad enough that we lose it all, but then to have people be mean and cruel on top and accuse us of faking it or belittling how bad this really is, it's just so cruel. I've also had people make comments about my weight over the years. People who didn't know me before I got sick. I was a bodybuilder, an athlete. I did not look like this. And the most humiliating thing for a former bodybuilder is to pack a ton of weight on them and have them go out into the world like that. Believe me, this is not by my choice. Any time someone comments on my weight, I just wish they could have this disease for even a few months and see what it's like. When you can't exercise, and you can't move about much, the weight packs on.

I used to be a very social, popular person. My phone always rang. My friends always wanted to see me. I wasn't an introverted couch potato. I wasn't lazy or fat.

Now, I'm just a shell of what I once was, this unseen ghostly neighbor that you might get a glimpse of once in awhile before she disappears again for days and weeks and months on end.

Comments

Nielk
Carrigon,

You have a right to want all these things in your life. These are the basics that well people take for granted. It is really horrible that you have had to give up everything that you cherish in life. Unfortunately this is what this illness does. It is very cruel.
I don't think that you can expect others who don't experience this same thing to really understand. You just have to accept the fact that they will not get it. Especially since these people didn't know you from before. I don't think your neighbors are unusual. This is what we are all experiencing all over, wherever we live. I think it is too much to expect for "normal" people to really understand. Once you accept this fact, I think it will be easier for you to deal with their comments. Just think of them as children who just have no capacity of understanding.

I hope your back problem heals quickly. It's great that you have been seeing some positive results with pots. This back thing hopefully is just temporary and you will regain your strength soon.
 
K2 for Hope
Carrigon,

I feel the anguish in your words. I am sending as much love and peace as I can your way!

I'm glad U have a place to say anything.

Peace and Calm... breath it in.... :angel:
 
hope love light
Carrigon,

I was just crying at home yesterday for most of the same reasons that you mentioned. I am a ghost whom my neighbors never see. Too tired to socialize or have anyone over cause I'm dizzy and anxious most the time. I don't have alot of friends and get lonely at times too, I miss being normal and crave that boring life you speak of :) I guess I got the boring part some times.

I am glad that your move is over and hope that in time your back issues improve as well...
Thinking of you!! Hugs!!

Hope Love Light
 
Carrigon
Thanks. I think it's so important to post these things because people do see it. It will show up in google searches and such, and maybe real media will read it, or curious relatives or friends of people like us. I just think it's very important to have a real public record of how bad this is. One of the things that angered me the most was my relatives insisting that there are other diseases worse than this and ours is minor. No, it's not minor. And you really can't compare it to any other disease. Ours is the only one where we have to prove we are sick and we still are not believed. If you have cancer, or MS, or HIV, or anything else, your friends might rally around you, and everyone is there for you. But this disease, everyone just throws you in the garbage can. They want to pretend we don't exist, or they have it in their minds that it can't be as bad as we say and know it is. The only way to fight that is to keep posting these things and constantly shove it in their faces. This is not a disease that should be ignored or minimized. It's one of the worst ones on the planet because it takes everything away from you.
 
jimells
Hi Carrigon, hope your back is a little better.

It is hard to understand why some diseases evoke sympathy and support, while others only deserve disdain. Look at the role of the media and propaganda machine in promoting certain diseases like cancer. All around us are politically powerful 'non-profits' such as the American Cancer Society. Everyone is told to Be Afraid - and they are, perhaps with good reason. Personally, I'm more afraid of the cure than the disease. There is just unbelievable amounts of money being made off of cancer. And it's getting more profitable every year.

My next door neighbor has some horrible cancer that will likely kill him, sooner rather than later. I've known him for 30 years. He's a nice guy. He had an old welder from his father-in-law, but no place to set it up, and he wasn't much of a welder. I can get by, but don't look too close. So we set it up in my machine shed, and when he needed to weld his snow plow, I took care of it.

That was years ago - now we are both sick. But people had a benefit dinner for him, while my illness is just ignored. Of course I don't look sick, and I'm not at death's door.

Maybe the illness that has wrecked our lives will be recognized for what it is, about the same time society starts treating mentally ill folks like people instead of yesterday's fish wrap. Or when a drug company figures out how to make billions off our illness.

I don't have high expections for the people around me. But I demand to be respected by the agencies that claim to exist to help us, like the social service agencies, doctors and hospitals. How can they be as ignorant as the poor fool down the street?
 
Carrigon
jimells, they've already figured out how to make billions off our illness. We are the perfect patients, people who will never be well, people who need tons of expensive tests, and treatments, and prescrips.

The truth is, the CDC, the government, all of it, is now controlled by Monsanto. Monsanto is the Umbrella Corp of the world. They have a hand in vaccines, government, all forms of medical, the FDA, and the GMO's they shove into our bodies daily. We will never get the help we need as long as Monsanto controls the world. And right now, they are too powerful to stop. They have no intention of ever curing us. They might pump out expensive treatments to milk every medical dime they can from us, but they won't cure us. And they won't cure cancer, AIDS, acne, or acid reflux. All big money makers.
 
Ocean
So sorry to hear all this. I find that on top of all this illness robs from you, losing social support on top of that is sort of the ultimate insult.

There really is so much loss with this illness as you described in your post and I think it's healthy to grieve those losses. I feel many of them too. I'm glad we have this place to let out some of those feelings.

Wishing you the best,

Ocean
 

Blog entry information

Author
Carrigon
Read time
4 min read
Views
718
Comments
8
Last update

More entries in User Blogs

More entries from Carrigon

Share this entry