In Memory of Patrick Kelly/hubcap_halo

[Rachael]

I didn't know Patrick, but I shed a tear today for this exceptional, young man and for all the other ME/CFS victims who have suffered from this terrible illness (a living hell) for far too many years.

 

[Old Salt]

I didn't know Patrick but I too am a man and diagnosed with CFS almost fourty years ago.
Before the illness, I could never comprehend how one could take ones own life. Then I found out. CFS compelled me to write a short book of life and death on this planet. It doesn't comport to have all the answers but I believe it has most.
The title is Boot Camp To Eternity, an ebook on Amazon Kindle, Kindle reader not needed.
One can preview the book free of charge.

 

[Hope123]

Light a candle for Patrick and other people who have passed away from ME/CFS and its complications:

http://www.gratefulness.org/candles/candles.cfm?l=eng&gi=MECFS

http://www.blueribboncampaignforme.org/ME_CFS_Memorial.html

 

[Tito]

He is now free.

 

[Tito]

Unlike other posters, I am not sad. I am angry. Angry that we are left rotting in our beds for decades; angry to be ridiculed by the very people who pretend to be there to help us; angry that animals are treated with better respect than us; angry that we have been forgotten by all; angry that I never hear the word 'prevention'; angry that nobody is angry about this scandal.

 

[Cort]

To me this is a like an unexpected burden that we need to be aware of. Its something I really never thought of - I've never had really high improvements or suddenly devastating relapse but a section of the ME/CFS community goes through extroardinary changes in health sometimes really rapidly....

Nods.. I agree. When I had complete remission for a couple of years then suddenly started crashing. The whole situation hit me FAR HARDER then it had the first time even thou I didnt go back to my original severe level.

People may think someone was lucky to gone throu a level of improvement or even a remission but it soo sucks loosing everything all over again for a second time and esp cause you know more about what you are possibly in for again, second time round..

I think there needs to be more awknowledgement of just how hard that can emotionally/mentally be and the possibility of maybe an increased suicide risk at that time. It truely just makes one want to just give up.

No one seems to really know if that is what happened to Patrick or not and if it was what finally pushed him over that edge but its certainly a possibility.

I cant remember ever communicating with Patrick but it is sad to hear he was trying so hard to find something to help... only to end up feeling he couldnt continue on any further.

RIP Patrick and condolences to his family

 

[Cort]

I didn't know Patrick but I too am a man and diagnosed with CFS almost fourty years ago.
Before the illness, I could never comprehend how one could take ones own life. Then I found out. CFS compelled me to write a short book of life and death on this planet. It doesn't comport to have all the answers but I believe it has most.
The title is Boot Camp To Eternity, an ebook on Amazon Kindle, Kindle reader not needed.
One can preview the book free of charge.

Thanks Old Salt - I didn't know of your book....I like the title

 

[CJB]

Very well done, Cort. It's an arresting story. I did not know of him and it's sad to meet him this way.

"The light that burns twice as bright burns half as long."

Godspeed, Patrick.

 

[Googsta]

To me this is a like an unexpected burden that we need to be aware of. Its something I really never thought of - I've never had really high improvements or suddenly devastating relapse but a section of the ME/CFS community goes through extroardinary changes in health sometimes really rapidly....

Thankyou Cort & Tania for mentioning this, my condition is relapsing/remitting & I often feel an outsider amongst other patients because of this. It adds further to the isolation that you are already struggling with.
I also feel guilt because I do have times where I improve, I know it's not logical but that's how I feel.

There needs to be greater acceptance among ourselves, everyone's ME/CFS is different.

.[/QUOTE]

Nods.. I agree. When I had complete remission for a couple of years then suddenly started crashing. The whole situation hit me FAR HARDER then it had the first time even thou I didnt go back to my original severe level.

People may think someone was lucky to gone throu a level of improvement or even a remission but it soo sucks loosing everything all over again for a second time and esp cause you know more about what you are possibly in for again, second time round..

I think there needs to be more awknowledgement of just how hard that can emotionally/mentally be and the possibility of maybe an increased suicide risk at that time. It truely just makes one want to just give up.

 

[Rrrr]

Unlike other posters, I am not sad. I am angry. Angry that we are left rotting in our beds for decades; angry to be ridiculed by the very people who pretend to be there to help us; angry that animals are treated with better respect than us; angry that we have been forgotten by all; angry that I never hear the word 'prevention'; angry that nobody is angry about this scandal.

AGREED!!!!!

 

[TheMoonIsBlue]

I am completely shocked and incredibly sad to hear that Patrick has passed away.

He was a prolific poster on ProHealth years ago. You can still read many of his posts there, under the name of "hubcap_halo"

I did not know Patrick but read many of his posts years ago when on ProHealth myself. He seemed like an incredible young man, talented, kind and generous and giving with his knowledge and so optomistic and wanting to spread and give hope to others who were suffering.

I am just so sad that such a bright light has left this world. And angry that so many are suffering. I am sad......and angry.

I hope you are at Peace, Patrick, and all the others who have left this world .

Here is a post from ProHealth he posted in 2008, someone else brought up on another site. The title of the post is "ME/CFS People: We are stronger than we give ourselves credit for"

http://www.prohealth.com/?me-cfs/blog/?boardDetail.cfm?id=1232510 I don't know if the link is working so I hope it is Ok for me to just post it here




"ME/CFS People: We are stronger than we give ourselves credit for


I'm back on this board and that thought just struck me.

I hear about people letting themselves be bedridden for 6 months on Valcyte because they want their life back---they want to work again, to spend more time with family and friends and be more active.

We change our diets. We change jobs. We downgrade our standard of living. We move to new cities. We give up apartments and even houses and spend time in the back room of relatives or friends apartments or houses (much gratitude to them).

We love coffee with cream and sugar but we cut it out, just on the suspicion that candida might be a problem even though there really isn't conclusive proof. We give up a TON of fun vices and tasty foods just on the hope that eating nothing but fresh veggies, lean meats, fish, quinoa, some fruits will help cure us or at least get us back to working part time.

We endure breakups that occur because of a relapse on the illness onset. We survive losing friends because the illness or a relapse.

We try meditation, qi gong, yoga, light exercise, visualizations...

We spend tens of thousands of dollars and travel great distances to see specialists who have complex protocols.

We spend hours studying the illness ourselves.

We offer support to each other.

We try to keep a sense of humor even though we're often angry or sad beyond words.

We grow a thicker skin and learn that just because 3/4 of the planet think the illness is in our head--we blow it off when they say it. We often don't fight them verbally, just to save our strength. OR we set them straight and cite sources in the hopes that they won't rake the nerves of the next ME/CFS person that comes along. We fight to make them understand.

We've missed months, even years of our lives--and yet we carry on as best we can and with hope of better health in the future.

We'll try a treatment and when the treatment makes us feel like sh*t we agree with our doctor, "That means it's working!" and when the treatment makes us feel better we say "That means it's working!" THAT, folks, is optimism.

When a friend complains about the horribly busy day they have we don't remind them they are darn lucky to be able to HAVE a busy day. But if they take it too far and say their vacation was ruined by one horrible day of being sick in bed, we stand for ourselves and say, "Hey pal, try to keep your audience in mind a little."

I've logged 1400 days in bed in the last 11 years. There are many who've logged more. That's a lot of time to be alone with your thoughts and a painful body or fevers. Based on all the rest I need, a friend once said, "I want your job!" I assured her she doesn't. I like working. I like being busy. I like being healthy.

We are stronger than we give ourselves credit for.
[This Message was Edited on 02/15/2008] " by hubcap_halo (Patrick)

 

[TheMoonIsBlue]

YOU WERE STRONG, PATRICK. And I know from all the posts online from so many of your friends that you gave strength and HOPE to so many. Bless you. And to Patrick's family.....I am so, so sorry for your loss.

 

[Googsta]

I've logged 1400 days in bed in the last 11 years. There are many who've logged more. That's a lot of time to be alone with your thoughts and a painful body or fevers.

I've never heard it summed up that way before, it really hits home.

((HUGS)) for all of Patrick's friends who are mourning.

 

[K2 for Hope]

Lighting Candles

Light a candle for Patrick and other people who have passed away from ME/CFS and its complications:

http://www.gratefulness.org/candles/candles.cfm?l=eng&gi=MECFS

http://www.blueribboncampaignforme.org/ME_CFS_Memorial.html

Hope123:

I lit a candle on the Tribune paper link, but am not sure how to light one for Patrick on these links. But going to these links, I am struck by how many people have passed with this illness. If you have a minute, could you explain how to light a candle for him?

It doesn't always say how or why, but Patrick's death really hit home today as another Dr just refused to see me because "people like me are too complicated".

Thanks,
May you all find some peace and happiness. Because of you, I am still alive.



PS> I volunteered for the Phoenix Rising Website and everyone is very patient with how our illness and our life struggles affect the amount of time we can contribute. Sometimes it's just contributing ideas, sometimes more. But, it is keeping me alive and for my family, that means alot.

 

[Rrrr]

YOU WERE STRONG, PATRICK. And I know from all the posts online from so many of your friends that you gave strength and HOPE to so many. Bless you. And to Patrick's family.....I am so, so sorry for your loss.

what an amazing post patrick posted back in 2008. it is so right on! thank you for re-posting it here.

 

[K2 for Hope]

OK, just figured out how to light candles from the link posted above by Hope123:

http://www.gratefulness.org/candles/...l=eng&gi=MECFS

(The link takes you to a site with candles, some burning, some not. Pick a candle not burning and click. It will tell you the rest. Thx.)

Also, I would love to see what he posted (the quote above) make it to the ME/CFS Awareness week along with his story.... if it doesn't offend his family. Posted 4 yrs ago.... hoiw long do we wait, how long my friends....

May he find peace on his FB post of the peaceful beach.

 

[Cort]

I was just talking to someone who has mostly recovered and she feels some guilt as well. I don't know how to get over that except that really speaking as someone who is not well - I really hope that when you get well you enjoy the hell out of it!

I can understand that you would feel that you shouldn't leave people beyond, that there's really something not right about that - I can really get that....but just knowing that other people do improve alot (at least temporarily) is very helpful I think.

Finding this relapsing/remitting group has been on of the most interesting things the Forums has brought me...I really had no idea..because while I've had ups and downs - my trajectory has been pretty gradual all the way.......

Thankyou Cort & Tania for mentioning this, my condition is relapsing/remitting & I often feel an outsider amongst other patients because of this. It adds further to the isolation that you are already struggling with.
I also feel guilt because I do have times where I improve, I know it's not logical but that's how I feel.

There needs to be greater acceptance among ourselves, everyone's ME/CFS is different.

.

[/QUOTE]

 

[Cort]

I think that's one of the most evocative posts I've every read - which honestly makes me feel sadder TheMoonIsBlue...

Again I can see how he effected so many people and why his death has touched so many.....

I am completely shocked and incredibly sad to hear that Patrick has passed away.

He was a prolific poster on ProHealth years ago. You can still read many of his posts there, under the name of "hubcap_halo"

I did not know Patrick but read many of his posts years ago when on ProHealth myself. He seemed like an incredible young man, talented, kind and generous and giving with his knowledge and so optomistic and wanting to spread and give hope to others who were suffering.

I am just so sad that such a bright light has left this world. And angry that so many are suffering. I am sad......and angry.

I hope you are at Peace, Patrick, and all the others who have left this world .

Here is a post from ProHealth he posted in 2008, someone else brought up on another site. The title of the post is "ME/CFS People: We are stronger than we give ourselves credit for"

http://www.prohealth.com/?me-cfs/blog/?boardDetail.cfm?id=1232510 I don't know if the link is working so I hope it is Ok for me to just post it here

"ME/CFS People: We are stronger than we give ourselves credit for


I'm back on this board and that thought just struck me.

I hear about people letting themselves be bedridden for 6 months on Valcyte because they want their life back---they want to work again, to spend more time with family and friends and be more active.

We change our diets. We change jobs. We downgrade our standard of living. We move to new cities. We give up apartments and even houses and spend time in the back room of relatives or friends apartments or houses (much gratitude to them).

We love coffee with cream and sugar but we cut it out, just on the suspicion that candida might be a problem even though there really isn't conclusive proof. We give up a TON of fun vices and tasty foods just on the hope that eating nothing but fresh veggies, lean meats, fish, quinoa, some fruits will help cure us or at least get us back to working part time.

We endure breakups that occur because of a relapse on the illness onset. We survive losing friends because the illness or a relapse.

We try meditation, qi gong, yoga, light exercise, visualizations...

We spend tens of thousands of dollars and travel great distances to see specialists who have complex protocols.

We spend hours studying the illness ourselves.

We offer support to each other.

We try to keep a sense of humor even though we're often angry or sad beyond words.

We grow a thicker skin and learn that just because 3/4 of the planet think the illness is in our head--we blow it off when they say it. We often don't fight them verbally, just to save our strength. OR we set them straight and cite sources in the hopes that they won't rake the nerves of the next ME/CFS person that comes along. We fight to make them understand.

We've missed months, even years of our lives--and yet we carry on as best we can and with hope of better health in the future.

We'll try a treatment and when the treatment makes us feel like sh*t we agree with our doctor, "That means it's working!" and when the treatment makes us feel better we say "That means it's working!" THAT, folks, is optimism.

When a friend complains about the horribly busy day they have we don't remind them they are darn lucky to be able to HAVE a busy day. But if they take it too far and say their vacation was ruined by one horrible day of being sick in bed, we stand for ourselves and say, "Hey pal, try to keep your audience in mind a little."

I've logged 1400 days in bed in the last 11 years. There are many who've logged more. That's a lot of time to be alone with your thoughts and a painful body or fevers. Based on all the rest I need, a friend once said, "I want your job!" I assured her she doesn't. I like working. I like being busy. I like being healthy.

We are stronger than we give ourselves credit for.
[This Message was Edited on 02/15/2008] " by hubcap_halo (Patrick)

 

[TheMoonIsBlue]

I remember from reading his posts and his profile on ProHealth, one thing stuck out: he seemed like a man that was PASSIONATE. Someone who was so passionate about everything in life and interested in so many things, from the time he was young. It doesn't t seem that long ago that he was posting about looking to re locate and asking people's opinions about nice locations to live that had a lot of doctors to pursue further treatment options.

That is why I was shocked, speechless, when I saw his photo on the homepage and read the caption.

I don't want to speculate about the surrounding of his death. I believe it is a private matter and he and his family are due the respect of privacy.

But I think, when a person has such passion, energy and desire and love for living, and they are trapped inside a body that is broken and will not let them live the life they so desperately want and need- and deserve- well............I don't know.

The relapsing-remitting nature that this illness can take for some people is something I don't have personal experience with since my condition has more or less stayed the same for years, but to have some semblance of a LIFE given back to you and to feel yourself suddenly crawling out from under dark clouds and see the sun again.......and go out into the world and be with people............to have that and then have it ripped from you once again, over and over, that would be devastating. Simply devastating.

I only hope he and all others who have left us are genuinely at peace and there is no pain and only happiness wherever they are.

 

[minerva]

I was just talking to someone who has mostly recovered and she feels some guilt as well. I don't know how to get over that except that really speaking as someone who is not well - I really hope that when you get well you enjoy the hell out of it!

It's called survivor guilt. Soldiers who survive wars when their buddies die (or are severely wounded) have it. Natural disaster survivors whose families die have it. It can be a big part of PTSD - wondering why you got out and others didn't. I bet it's one reason that recovered ME/CFS patients don't often hang around the forums. When friends with ME lose function, I have some survivor guilt myself -- why is her disease course so much worse than mine? Nothing about this disease is fair.

I agree with everyone that having a relapse or crash after being more functional for awhile is the worst. My darkest moments have been there, because I *know* how limited my life is then. If I've been housebound except for brief errands in my neighborhood for a year, I don't miss being able to take a day trip to the coast. If I've had a headache for seven months, I am accustomed to it. But if I've had a flash of false hope that I might recover and started to see a bigger world with less pain, this body and these walls start to feel like a horrible prison.