To be or not to be....

There are so many people here that linger in the shadows. They read, they say nothing. I wonder about these people. Not wonder as in, "What's wrong with these people? but what is their life like?" Then I think to myself, perhaps they are too ill to write anything or maybe they don't want to write something because they don't want to sound like a downer. Or maybe they are too ill to even process anything. We all have a story.

My favorite posts and I am going to say names here are Victoria's ever shining posts of hope and she walks us through the day to day; mattresses, grocery shopping, retirement. Funny, happy, inspiring is what comes to mind. Kelvin, gosh Kelvin you crack me up. I love your pictures and you have that dry sense of humor. That British dryness. I love it. Laurel. Laurel, for as ill as you are, you have this spirit that I can see in your pictures and feel with your words. In bed mostly, not much energy but full of hope and life. Thank you. It's truly inspiring to all of us and hopefully to those that are most ill. The woman who lives in a tent, I believe?? Love it. I can smell the flowers and feel the coolness of the fresh air. I feel a sense of invigoration after reading your blogs. I feel life and purpose! That means so much.

To be or not to be..."a victim." We are all ill. We all have pain, we all for the most part have financial woes, but it's the human spirit that lives on. If your spirit is sinking, you are in trouble and it's easy to be like that when one is so ill. Try not to stay there. Hard to do, but harder to overcome this illness if you wallow in your misery.

Years ago, I was in my 20's and ill. I was always the CFS gal though, that half lived meaning; I could still work, go out here and there, etc. I worked in radio in Philadelphia, which was the 4th largest radio market in the country. I worked part time. Always a music buff, I loved it. I was a spitfire. I have been called the sledgehammer. Kind of funny. Why? Because I am blunt. Anyone who really knows me knows I have a filter, but I can lay it on the line without a thought. As the years have passed, that intensity has died down. It makes me sad because I know it's the illness. I used to be able to really debate too. Not anymore. Too much work. I listen more now, which actually has proven to be wise. Talking is overrated. Sometimes it's good to listen instead of talk. I need silence in the mornings, and music isn't heard throughout my house like it once was. But, I can still tell you every single Led Zeppelin album in order and what dates each album came out or who wrote "Claire de Lune" and how long the song is....how long it truly is.

I was driving today and thinking, "God, I miss dancing." I am such a good dancer. I love to dance. I took bellydance lessons for a year and when I was younger I won all kinds of awards for dancing. I rarely dance anymore. I just can't. But guess what? It's still there. Just not as much. But there is a beauty to that because when it is there, I unleash it and "there I AM." ME. I am still here, underneath the layers of illness. I may not shine as bright as I used to, but anyone who gets to have a peak at all of the facets that make up this diamond, is lucky! And in some respects, maybe I shine brighter because I am ill, have suffered some severe losses, I can still laugh and my eyes still sparkle. My ex boyfriend, who mostly saw me in pajamas, always called me a rockstar. When I asked why, he answered, "Because in spite of your illness, you are still feisty and beautiful and you shine brighter than those who are well." I loved that.

I know what it's like to be horribly ill. Not only to be horribly ill but to have no one. To be alone. Years ago, I had to fly 5 hours to San Francisco for major surgery. I had endometriosis. I saw Dr. Debra Metzger, one of the best. It was $10,000 out of pocket. $10,000 I didn't have. I was desperate. I was worried sick. What if it doesn't work? I went by myself and lived with a family who took me in. The woman who took me in had endometriosis. Why did this happen? Not one person in my family wanted to take off from work and come with me. NO ONE. I had the surgery and developed a massive blood clot. I had to be choppered from the East Bay to San Fran. I almost died. I was in the hospital for 7 days for this massive blood clot. My doctor was shocked that not one family member came out to see me. It was embarrassing. I am not revealing this for someone to feel sorry for me. I had a friend who was diagnosed with lyme disease recently. She isn't as ill as I am and yet every doctor's appointment, she will not go alone. She is too scared. I think having support is wonderful and if you are so ill that you need someone to assist you or help you, it makes sense to have help. I never have help, it bothers me when really ill, but sometimes, it is what it is and I have developed thick skin. I went through 10 surgeries in 8 years, including one back surgery, partial removal of my intestine and bladder surgery. Everything is still intact, I still have all of my parts minus an ovary and fallopian tube. I know pain, fear, isolation and grief. But I never became it.

My friend who has CFS asked me today; with all of your losses and your being so ill, where does your inner strength come from? How do you create such beautiful jewelry? I realize this is a compliment, but it angers me for some reason. Am I supposed to lay down and die? I am full of piss and vinegar...that's what it is. I can be really sick and I will find a way to make a necklace even if it's in my bed laying down. There is this creative part of me that must come out and I feel so much better for having done so. Not everyone is lucky enough to have that ability. Not everyone is well enough. And that's ok...as long as you don't wear it. I can't do like I used to, but I don't wear it. I don't concentrate on everything I can't do. I concentrate on what I can do. What purpose does it serve to wear it? Say goodbye to friends! Even just the virtual kind. Even as ill as I am, I eschew someone who just complains and never musters up any sunshine. And what's funny about that is, when I am really sick and someone else is super sick and negative, I want them away! We all need sun and light...that goes with the personality of a person too.

It is doing "no one" good service to advertise this illness as the end of a life. It is not. It is the end of the life as you knew it, as you had hoped for, but life is still here and negativity will get you nowhere. I have even done injustice in saying that this illness has ruined my life at times. Has it? No. Actually, it's taught me a lot. I wish I didn't have to learn those things, but it hasn't ruined my life. I don't let it. I still cry, I get angry and sometimes I even laugh at myself during these times because I laugh at my self indulgence. Some weeks may stink, some months may suck, but I try...TRY to say something positive about that day, about a moment, about something.

I believe that we all get what we put out. If you are always negative, you will attract the same. If you are positive, you will attract positive people. It's all up to you! To be or not to be....that is the question!

Comments

I understand about the relatives. Not one of them came when I was in the hospital almost dead with the encephalitis. No one cared.

While it's nice to be all sunshiney, I do have to say, for those of us who have this severe, it is critical that we tell how the disease affects our lives because people need to know how severe this disease really is. It can no longer be downplayed by the press and the governments of the world. People need to see how severe this can be or we will never get the real help that we need. We have to break out of the stereotype that this is just a disease of being tired.

Hobbies are very important, whether they are used to make money or simply just to keep your sanity. I think it's always important to find ways to be creative or for those who don't even consider themselves creative to at least have a hobby with being involved with their favorite topics on the net or in real life. There is always something to be a fan over.
 
Way to go Spitfire. The journey is different. It doesn't mean that everything is ugly. We are all learning about ourselves. We cultivate our inner gardens. I choose to stay positive. And we'll get through.
 
Nicely said, Spitfire! Love your spirit. Somebody said (Maybe Teddy Roosevelt), "Do all you can, with what you have, in the time you have, in the place you are." I've been amazed that I have filled 3-1/2 years with these limitations without moaning to myself about being bored. Somehow the time goes by and I've gone through many phases of doing different things. Living a horizontal life can be done! It has brought a whole new meaning to living in the present, living one day at a time, living one moment at a time. I'm still learning something new everyday. The only difference now is I forget it. I guess that means I'll never run out of 'new' things to learn though:D
 
Carrigon, I agree that the media needs to know, but I don't think the media is looking on this site. I also think that scaring people that have CFS and who are newcomers is the wrong way to go. I wouldn't want to read all the negatives about someones horrible life as a newcomer...sort of like how I don't want to read it "all the time" now. I am on a forum on another site where I have been sick a long time; much longer than these other folks. I don't fill them with doom about what I have been through. They might not go through it and they need a ray of light to hold onto. When I first got sick, I was in total denial and it wasn't such a bad place to be...I FOUGHT and was positive.

Getting it across to the media is brilliant and should be done, but for people who come to this site for strength, hope and support, talking about how miserable one is can be a DRAIN. I hope that some CFS sufferers can feel that life isn't a constant negative...the power of positive thinking should never be underestimated.
 
I disagree with you. The media do look at sites like this, as well as relatives of people who are ill. And they need to know how bad this is. Pretending everything is happy and roses is wrong.

If you don't want to read negatives, don't. No one is forcing anyone to read anything here.

For some of us, this is the only place where we can talk about things that go on in our daily lives. And many of us are alot more severely ill than others. For us, we want support from others like us. Alot of people are bedridden and housebound with this. They cannot go out like you can. And it does help them to hear from others with similar experiences.

As I said, no one is forcing you to read anything you don't want to read. But I would hope you would remember that there are alot of people who have this very severe and if you don't want to hear from them, you don't have to read their posts or stories.

And yes, it is vital that these stories be told anywhere we can tell them. I think over twenty five years of suppression is far long enough. And we have every right to let people know what this has done to our lives. And I will never stop talking about it and sharing what goes on in my life from this disease. Forums like this are for support, not just for people who have this mildly, but for those of us who have it alot more severely.
 
Hi,
Thanks Spitfire, for a wonderful post. I just may print it out for my CFS husband as he is not able to be on the computer. He did not have computer skills before CFS and has no patience for it now, at 73 yrs old.

I'd like to weigh in to this discussion saying we need both the uplifting and positive perspective, as Spitfire has provided, but also that, even for some newcomers, the miserable truth.

From our experience I see two good reasons for the miserable truth:

1. So someone who is suffering and has been down the psychosomatic route with the docs, can have some validation that it is NOT just in their heads and something wrong with their thinking and they can 'get over it.' And seeing that they are not imagining all the weird, inexplicable things that are happening to them. It is so nice to NOT be so lonely in all the weirdness of CFS. If the grisly details are not shared, how can one know?

Just a couple days ago I printed out the thread on the discussion about big meals - and bowel movements - bringing on POTS like symptoms. That has been happening to John and he has not seen the connection and has been so frustrated. Now that he has seen others commenting on it, it is much easier to accept what the trigger is, not panic about why it has all suddenly go wrong, and just lie down until it passes. Not worrying about what the trigger was has been very helpful already.

2. To get past the denial point. I know this is a bit touchy, but John fought CFS soooo hard for so long, trying to be the person he used to be, he really dug a deep hole. Perhaps (and of course we'll never know) if he had understood the whole thing much earlier he could have got out of denial sooner and learned to do what he is doing now, learning to live within his limitations. Hope is a nice thing, but hoping for something that is very unlikely to happen, and more importantly, fighting to make the hope come true, was not very useful.

that's my two bits for today. We definitely need to see BOTH perspectives.
 
Well said my friend. Great Blog.

Spitfire in name & Spitfire in Life.

We spend so much time in our lives looking for happiness or health, career or financial security. When it all boils down to it, living in the moment & letting life be as it is, is far more precious.

In 20,30 or 40 years from now, when you look back on life (chronic pain, fatigue & illness), what will you remember?

Hopefully, you will remember the laughs, friends & good times (even if they only live in this virtual life on the internet). For it's the journey that brings memories & joy, the special moments of sharing our experiences, not the never ending wishes for the future (that may never come).

If one day, you regain good health & the opportunity to live your life more fully, enjoy that too (if & when it comes).

But if you spend all your days wishing for tomorrow, one day you will wake up & find tomorrow is in the past and you missed every second of it's existence.
 
Great blog post, Spitfire... and thank you for your compliments. I'm honored to be mentioned!

In regards to the negative stories of this illness... I think they are important to share in terms of respecting everyone's story on all sides of the spectrum, and in educating others about the seriousness of this illness. It is in part why I chose to tell my story, because the sickest of us often don't get to have our stories heard. In fact, people don't even tend to want to hear our stories because it is too depressing, or too scary. But I wish I'd heard more stories like mine when I first got ill, as it would have humbled me, and made me realize what was at stake. As you say, though, I think there's a way to describe the extreme cases in a way that is still positive and shows the life and spirit that remains despite the life that has been taken away.

I am too sick to keep up with posts, which is why I'm not very active... and know there are many out there like me. But it's a comfort just knowing it's there, as I'm sure this list is a comfort to so many others as well.

Anyway, not sure what my point is exactly. :) But I enjoyed your post and thank you for writing it! Keep up that positive spirit! :)
 
First I would like to apologize to anyone who thinks that I am saying never write about the negative. Of course it should be written. Nobody should write positive posts all the time. It wouldn't be the truth. I am sorry if I have conveyed that.

Laurel, you are ill, quite ill and yet you are not your illness ever in your posts. That's what I love about your posts. You still see the light even though you may spend time in bed. Of course there are so many out there that have it so bad. And for them, suicide may seem like an option and I wouldn't blame them.

My point is, it's refreshing to read uplifting thoughts from someone who is so unwell. Telling a story of reality and being deathly sick and yet throwing humor in or just some sign of light.

And Carrigon, for you I know life is just awful. I have read all of your blogs and I am so sorry. Whenever I do much of anything I pay too. It is a horrible way to live, but I try to keep a positive spirit and sometimes I fail. But I try. I think that's the point I am trying to make. This is not a debate. These are my feelings just like you have your own....your own blogs etc. I wish for some relief for you....
 
Oh, I know what you were saying, Spitfire! I completely agree with what you said.
 
spitrfire,
im a lurker,lol. although i have a ton of things to say & get off my chest, my brain wont cooperate:(
i end up sounding like a Kindergartener when i try & write. thanks to you & all the bloggers, you all feel a lot like i
do, and say it Much Much Better!
Kat
 
Wow. Beautifully written piece, Spitfire. You are seriously talented. Thanks for the kind words as well about my blog. But I'll let you in on two secrets:
1 I'm selfish. I read the blogs and posts here to help me.
2. I'm selfish. I write my blog and post here to help me.
Both are therapy for me. Yes, I'm very glad that others are benefitted by what I write, and I used to be pretty altrusitic. But after living with this hideous disease, I've learned a little better how to survive, and think of me first.
To that end, I underscore your point--- anyone who is looking for some easy, inexpensive therapy, should think about writing and posting on this Forum. It actually helps me immensely.
 
Maarten Maartensz;bt1471 said:
Hello Spitfire,

Fine blog-contribution!

Just a few moments ago I asked Kim to help me move these two items to the
Phoenix Library:

http://pcp.lanl.gov/Papers/Giftednessmodel.pdf
http://pcp.lanl.gov/Papers/GiftedProblems.pdf

I think - he said, smiling wickedly, being a psychologial pro - it may help some on this forum to come to a little better self-understanding.

And here is a very nice quotation from the Problems.pdf, probably the best of the two references, and also the shortest:



I think - from Spitfire's (former) signature, that I completely agree with except for the size of the lettering & the sad fact real high giftedness is rare, like all really good things & people, alas - that Spitfire agrees.

My own take on the matter, personally, philosophically & psychological, is here:

-- http://www.maartensz.org/philosophy/maartensz/mencius on human qualities.htm

And as to the contents of your blog: I love dancing too, and used to be quite good at it (my aunt was a ballet professonial a.k.a. ballerina), and like LZ a lot (and other music too, such as Renaissance music, which I add in case you believe I believe there's only rock, which you almost certainly don't).

Anyway: Check out GiftedProblems.pdf (link given above) & see whether it makes sense to you. I score 20 out of 20, but have known this (not the reference) a long time, and being a male probably had it easier with being highly gifted.

Best regards,

Maarten.
well I think i was gifted for a long time but this illness has changed me so much
for example its only recently that I have been able to write a short shopping list
spent several years trying to develop a way to convey my shopping needs to others
and failed miserably....over the years I have lost more and more cognitive abililties
but people seem to still believe me to be functioning much better than I am

guess they see the person I was, rather than the one I have become......Sandy
 
I think that Spitfire's point is a very valid one. Not to mention a HEALTHY one. It is not that she doesn't want people to be able to express their feelings of frustration EVER, just not ALL the time. It is a much healthier approach to try to see the positives in your day as tiny as they may seem. Yes, we are all at different levels of severity in this illness (BTW mine is severe) but to be able to say I was able to get clean today whether we did it or another assisted, is still a possitive. I denied my illness for a long time, thinking I would "fight it" LOL! But I am glad I didn't have my head full of the awful things that can happen with this illness or I might have fallen into a very deep depression, never to see a glimmer of good again.

So, thank you Spitfire for your encouragement, which is something we all could use more of. Wallowig in our own misery is just going to bring us down and scare the crumbs out of those resently diagnosed.

I know that I 'care for sufferers' and I'm sure you do too! (wink!)
 

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