Seriously-Suicide is Optional

For everything that is related to Lyme and/or Lymeland, but doesn't fit in the other forums. Speak your mind, connect, ask help, etc.
Cobwebby
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Seriously-Suicide is Optional

Post by Cobwebby » Thu 10 May 2012 7:18

Make the "Double Pinkie Swear Promise" Suicide Prevention
whatislyme.com

[quoteLyme Disease is such a devastating disease. It is so easy to become isolated and desperate with the never ending symptoms that Lyme Disease causes. Not to mention the abandonment of friends and family, and the rejection of the medical community. If you are feeling this way please reach out. There are lots of groups that can help. It can be hard to reach out, or even embarrassing. But those are NOTHING compared to the loss that your family and friends will feel if they lose you. So please reach out to others. Other Lymies will understand. I’ts okay to feel lonely, depressed, angry, or alone. These are real feelings just as happiness, joy, and all those are. But remember this is an infection in your brain making you feel this way. It may be just temporary. Try to hold on. You never know what is around the corner.][/quote]
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

Camp Other
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Re: Seriously-Suicide is Optional

Post by Camp Other » Thu 10 May 2012 19:30

This is a difficult disease to cope with. I think there are a number of reasons that people living with it may feel suicidal and unfortunately they aren't always discussed or those new to dealing with it may not even be aware that certain drugs may have psychological side effects which include suicidal feelings. The antiparasitic or antimalarial drugs are particularly infamous for this effect. There is even a condition which has been referred to as "the Mepron blues".

Camp Other
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Re: Seriously-Suicide is Optional

Post by Camp Other » Wed 30 Jul 2014 22:09

Did a search on existing LNE threads on suicide and figured this one as as good (if not better) as any to re-open this discussion because it's been at the front of people's minds lately in the Lyme community...

On another recent thread, velvetmagnetta wrote:
velvetmagnetta wrote:I, and many others, experienced or are experiencing a herx that just won't quit. I have heard of people having a herx for years. Certainly, this can no longer be considered a temporary worsening of symptoms.

Also, I experienced (and am experiencing) additional and totally different symptoms from the original Lyme infection! I will list these soon because I really want them included in this survey - if just to see who and how many others had or are having this problem.

And I'm not talking about some aches and pains. This pain was so bad for so long that I think this is the main reason for Lyme suicides. And there have been many many many Lyme-related suicides. It is a pain so bad for so long that people who were never depressed in their lives wish for death. I know Lyme suicides have been attributed to depression brought on by Lyme, but I don't believe that is the case - at least not clinical depression. If you look for them, you can find many stories about this - I have looked for them for obvious reasons.
This is a very important issue which needs to be addressed. Crucial.

Because a number of people with chronic Lyme disease do end up attempting or successfully committing suicide, and sometimes I've seen these patients being portrayed as being depressed.

No.

No, no, no, no, and furthermore, no.

It's not that simple.

I see the tendency towards suicide in chronic Lyme disease this way:

In the earlier stages of infection, when infection disseminates and when the infection is prolonged - whether or not under treatment or not - the pain is unbelievable. This is one of the most vulnerable times for suicide risk. I'd say if it feels like a herx that is never going to end, that can contribute to thoughts of suicide.

Extreme pain is the problem under these conditions. It isn't depression because finances are tight or you can't go out and visit friends for a few hours or take a trip to Florida. Those can cause depression, but they fall to #20 on a list of immediate concerns. The main problem is things hurt so badly you would do anything to make the pain stop. Including kill yourself. This is act of sheer desperation because either pain medication that was prescribed didn't work well enough or at all - or because you couldn't even get any pain medication.

As time goes on and symptoms improve - in particular once pain has lessened - fatigue then may dominate the symptom picture. Fatigue so intense, that gravity feels twice as strong than it normally would. Fatigue that makes doing the most basic tasks difficult. Fatigue which puts you in bed all day, or on the sofa, but doesn't always make you sleep. You just feel exhausted and useless - and you can't consistently do anything for any length of time without triggering more pain above your baseline and without becoming even MORE exhausted. To the point you might not be able to move.

Extreme fatigue is the problem under these conditions. And it can be so severe you don't see the point in living any more. And it isn't because you want to saw your head off the headache is so bad nor is it because finances are tight. It's because fatigue prevents you from doing just about anything. And also because while maybe the pain isn't quite as severe as it used to be, it is STILL THERE and coupled with the fatigue, it is like moving through a swimming pool of oatmeal with razorblades you can't see. Random pain strikes and then echoes, dulls, but remains.

When both pain and fatigue manage to lower to a level of a dull roar, you're still unhappy because they're still there, but once they have lessened to a certain degree, concerns further down the list become more prominent. This is when one can say one is depressed because money is tight and you don't see friends much any more and feel isolated or complain about how a relative doesn't believe you are sick or thinks it's something other than chronic Lyme disease.

Yes, it could have happened earlier on, but it's my observation and experience that the time people feel their most downtrodden and most vulnerable to suicidal thoughts and potentially taking that route is when they are in extreme pain that feels like it will never end. Then next, when in extreme fatigue with pain thrown in. Then, thirdly, as symptoms are still present but lessen somewhat and awareness of the passage of time and the rest of the losses one has experienced gets more of one's mental attention.

In tackling the Lyme suicide issue, we must have better, more effective ways to address and reduce physical pain first. Then find something to reduce fatigue. Concurrently, it would be good to find ways to address other problems too which may be easier to address, like getting more support from friends and family and the greater medical community as well.

velvetmagnetta
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Re: Seriously-Suicide is Optional

Post by velvetmagnetta » Fri 1 Aug 2014 21:02

Camp Other, good gracious, I'm sorry you've been through this and are going through this. This must have been painful to write. Thank you for writing it.

What you've written about the stages and the hierarchy of needs of one suffering this disease is so right on.

I can't believe how well you can put these most delicate concepts into words. I hope you will consider posting what you've written elsewhere - like on other Lyme message boards, etc.

You've posted this process you went through just as I am exiting the extreme pain stage - where I thought I would be ok if this pain would just let up a little.

I thought if all I had to worry about was fatigue, then, that's fine. I can do that. But as the moments of extreme pain become less, I am beginning to feel that exact kind of fatigue you described. And I'm beginning to look around at all that I have lost. And how this tiredness isn't allowing me to do anything about it.

I hardly even noticed the fatigue was there before because of all the emergency pain, but now - it's like I weigh 400 pounds! And I'm getting FRUSTRATED because as soon as I think I'm ok to do something - BAM - down-you-go. I just have to lay down for hours and hours.

Aaaaggghhhhh...Supremely frustrating. Thank you for sharing your experience. I can at least be prepared for when the fatigue brings up "those thoughts" again. I didn't realize that this can happen. But now I'm starting to see how it can.

Thank you, Camp.

Camp Other
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Re: Seriously-Suicide is Optional

Post by Camp Other » Sat 2 Aug 2014 23:37

velvetmagnetta wrote:Camp Other, good gracious, I'm sorry you've been through this and are going through this. This must have been painful to write. Thank you for writing it.
Just being honest. Someone has to talk about it. I think the problem of suicidal thoughts, attempts, and sadly, suicides themselves is a real problem and it needs to be addressed.

And I've been there. Even now, occasionally, the thought crosses my mind. I am depressed. I try pushing it back, and tell myself that my situation is not going to be like this forever and remind myself that my symptoms have in fact been worse. It helps - to some limited degree. The other thing which helps is distraction and helping others with CLD/PTLD online, and telling them that even if they are in severe pain now and it sucks, it will eventually be less severe. For some, that's enough to hold onto. For others... it is much harder.
velvetmagnetta wrote: What you've written about the stages and the hierarchy of needs of one suffering this disease is so right on.

I can't believe how well you can put these most delicate concepts into words. I hope you will consider posting what you've written elsewhere - like on other Lyme message boards, etc.
Thanks. I think it's important to blog about Lyme disease and suicide, and may include my comment in that blog post. Not sure how soon - and it is timely no matter when I post the blog article.

I don't generally go on any other forums these days except this one. I was on MDJunction for a while. I have a hard time keeping up in different places and don't have the energy nor attention to divide so I focus on posting here, on Twitter, and my blog. That's more than enough at the moment. Feel free to pass my words on, giving me credit if you wish to share elsewhere.
velvetmagnetta wrote: You've posted this process you went through just as I am exiting the extreme pain stage - where I thought I would be ok if this pain would just let up a little.
Yes. Even just a small amount of improvement gave me hope. Been there.
velvetmagnetta wrote: I thought if all I had to worry about was fatigue, then, that's fine. I can do that. But as the moments of extreme pain become less, I am beginning to feel that exact kind of fatigue you described. And I'm beginning to look around at all that I have lost. And how this tiredness isn't allowing me to do anything about it.

I hardly even noticed the fatigue was there before because of all the emergency pain, but now - it's like I weigh 400 pounds! And I'm getting FRUSTRATED because as soon as I think I'm ok to do something - BAM - down-you-go. I just have to lay down for hours and hours.
This is where I've been the past couple years. I find I can type longer online and read online from bed or a sofa more than I can do other things without having to take a break as soon. If I chat with someone, though, I have to take a break sooner. The level of interactivity and immediate real time feedback begins pushing the fatigue forward, so I end up stopping my online use then.

But outside of this, it's been hard to stand up for any length of time and complete a household task or everyday errand. It's been too painful, and then the fatigue hits, and then I need hours of a break after doing something most people would consider minimal effort.
velvetmagnetta wrote: Aaaaggghhhhh...Supremely frustrating. Thank you for sharing your experience. I can at least be prepared for when the fatigue brings up "those thoughts" again. I didn't realize that this can happen. But now I'm starting to see how it can.

Thank you, Camp.
It IS frustrating, I agree. And it is a cycle of sorts, and I find that sometimes I can cope with my symptoms better than other times, too. If you're under more stress or external pressure, it can bring on the cycle - it can worsen symptoms.

Ultimately, finding ways to reduce pain (alleviating it completely is hard, the goal can be to be more comfortable rather than pain-free) and reduce fatigue are the best solution. It isn't easy, though, and it may take trial and error to find something that helps you as an individual.

I found very hot baths at my most severe helped with bone-breaking pain. There was severe pain in every bone in my body and every tendon. I spent a lot of time in the bath, staring at the ceiling, trying not to move and only moving to refresh the tub with more hot water.

I found making my bed as comfortable as possible helped. It meant getting help to get more pillows and lining the top of the mattress with them, and also using extra cushioning under myself under each major joint. I got my setup to a point where I found a position where I didn't move much at all - was forced to fall asleep on my back locked into position because the simple act of turning over on one side was excruciating and I wanted to avoid that at all costs.

Those two items helped the most, though they were truly inadequate for addressing the severity of the pain I experienced. But other than lots of antibiotics and some nortriptyline, that's all I had.

There is no one answer for what helps and I imagine different approaches work for different people. Just knowing things would eventually get better helped, psychologically, in getting over the hump. Not being forced to do anything or be under pressure to do anything but sleep and soak in the tub whenever I wanted and needed also helped me get through the worst of it.

That said, something really needs to be done about experiencing that severity of pain. Patients need more effective pain management and treatment. Patients need more support through these major challenges during the course of infection.

RitaA
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Re: Seriously-Suicide is Optional

Post by RitaA » Sun 3 Aug 2014 9:27

My apologies if this has been posted previously, but some folks might find it interesting and possibly even helpful.

http://www.blogtalkradio.com/columbiaps ... nd-suicide

[42 minutes, 06 seconds]
Lyme Disease, Depression, and Suicide

3 months ago

Broadcast in Health

Renowned Lyme Disease expert Brian Fallon, MD along with frequent collaborator and expert on suicidal thinking John Keilp, PhD, will lead this greatly-anticipated talk.

The show will educate listeners about different aspects of Lyme Disease, including its presentation -- at times -- as a psychiatric illness, and the uncertainty about diagnosis and treatment. They will also discuss the problem of depression and suicidal thoughts in medical illness and why this is an important topic to address in regards to Lyme Disease.
snippet around 25:30
“Changes going on in the brain because of the infection ..... can become self-sustaining.”

velvetmagnetta
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Re: Seriously-Suicide is Optional

Post by velvetmagnetta » Tue 5 Aug 2014 18:47

Thank you for this, RitaA.

It is very heartening to hear people who care talk about this subject.

It's depressing, though, to get diagnosed with depression if you're not really depressed.

Slow processing speed - sometimes there is NO processing! The word you are trying to remember is completely blocked - no matter how hard you try to reach for it.

Cognitive performance often changes by the hour - so when it sounds like we are perceiving our cognitive difficulties to be worse than they really are - what I think we are doing is preparing ourselves and anyone around us who might be depending on our cognitive performance for the worst - which can happen at any time.

I believe we do really know how bad our own brains are working. We're the ones living with them and thinking with them!

Suicide was always more of a practical thought for me rather that of despair. Although despair is usually present, it is a secondary driving force to the practical considerations of being a financial and emotional burden on my family, having no prospects for getting better, and just the simple release from pain.

These are pretty valid reasons for feeling depressed, but it is very different from being depressed. People with true depression need no reason to be depressed. Their lives may be going rather well, but their brains make them feel depressed despite a positive atmosphere or a bright future.

This is not the case for me - and it sounds like it is not the case for Camp Other either. Even with my life falling apart around me and pain high above tolerance for epic lengths of time, I was not sad. I was angry and frustrated and felt despair at what my life had become. But I did not feel despair for the sake of despair. I had a damn good reason for feeling it.

And any time this huge crushing weight of pain and fatigue would lift just slightly, I would feel joy and hope. And even while traumatized by all this, I would jump up to live my life any time I got the smallest break.

Doctors and family members tried to convince me that I was depressed! But I was not! I don't know how you tell someone who thinks you're depressed that you're not - it sounds like denial, I guess? I don't know. I would never think to tell someone they were depressed if they told me they weren't!?!

But anyway, antidepressants make me actually depressed for no reason, so those are out for me. I really really really just want to get rid of this pain. I don't want to talk about it. I don't want to analyze how I feel about it. I just want it GONE. Period.

RitaA
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Re: Seriously-Suicide is Optional

Post by RitaA » Tue 5 Aug 2014 20:19

velvetmagnetta wrote: Suicide was always more of a practical thought for me rather that of despair. Although despair is usually present, it is a secondary driving force to the practical considerations of being a financial and emotional burden on my family, having no prospects for getting better, and just the simple release from pain.
I can relate -- trust me.

A secondary, situational or reactive depression (as experts like to call it) can be just as deadly as a primary mood disorder (including, and especially, bipolar disorder) when a person becomes convinced that their loved ones would be better off without them and/or that their lives are no longer worth living because of intolerable pain and/or other reasons.

No one that I have ever spoken to thought they were better off when a family member or friend died because of suicide. In most cases, survivors were absolutely heartbroken and traumatized.

Edited to add:

And yes, some antidepressants may actually increase the risk of suicide in some individuals -- but not everyone. It seems there's no way of telling this in advance, and there's a lot of trial-and-error that goes on in trying to find the right medication for any given individual. The sad reality is that sometimes nothing helps, and that's when doctors should clue into the fact there may be an underlying health condition that needs to be addressed.

RitaA
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Re: Seriously-Suicide is Optional

Post by RitaA » Tue 5 Aug 2014 21:28

If anything, the following demonstrates that even clinical depression still isn’t clearly understood by experts in the field of mood disorders:

http://www.sciencedaily.com/releases/20 ... 103033.htm
Phases of clinical depression could affect treatment

Date:August 4, 2014

Source: University of Adelaide

Summary: New insights into clinical depression have been found that demonstrate there cannot be a 'one-size-fits-all' approach to treating the disease. Researchers have developed a new model for clinical depression that takes into account the dynamic role of the immune system. This neuroimmune interaction results in different phases of depression, and has implications for current treatment practices.
snippet:
"Depression is much more complex than we have previously understood," says senior author Professor Bernhard Baune, Head of Psychiatry at the University of Adelaide.

"Past research has shown that there are inflammatory mechanisms at work in depression. But in the last 10 years there has been much research into the complexities of how the immune system interacts with brain function, both in healthy brains and in people experiencing depression."

Cobwebby
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Re: Seriously-Suicide is Optional

Post by Cobwebby » Thu 7 Aug 2014 6:08

[quote][/No one that I have ever spoken to thought they were better off when a family member or friend died because of suicide. In most cases, survivors were absolutely heartbroken and traumatized.
quote] Rita- I second that emotion.

I also feel so strongly about this topic that I think it belongs in Medical-and not some sidewalk café.

I sometimes wonder -"Why didn't I commit suicide?"

Perhaps the number one reason was that my brother killed himself. BRUTAL and knowing the effects of suicide on family and friends, in good conscience, no matter the intensity of my pain and suffering, it didn't hold a candle to the aftermath of a suicide in the family.
Number two- I have children of my own.
Number three-I sought professional help with a clinical social worker.
Number four- I was able to write about my pain.
Number five- somewhere in the deep recesses of a convoluted brain disorder , and experience as an aging hippie with a couple of "bad trips" behind me, I knew this too would pass.
Number six- NOTHING stays the same-NOTHING.

Now the reason I think this belongs in Medical is because I believe from my own experience and various articles that there is a very real organic reason for Lyme Depression that goes beyond circumstances.

Now the reason I came on board tonight was to try and post a picture of me wearing my very own lyme awareness tee shirt with a giant tick climbing out of the pocket to Camp Other's thread on lyme awareness- and I'll be darned if I can't figure out how to upload it from my computer. SIGH

And as long as I'm here, and were just chattin' it up in the café, I'll tell you that I am scheduled for a cystoscopy tomorrow. God Bless the neurogenic bleeding bladder. Effing Lyme Disease. At least I hope it's lyme disease-imagine that! I can deal with lyme disease , I'm familiar with it. My bladder was one of the first on-going issues after diagnosis. And things got better-so maybe they can again. If not- well- I'm still not going to kill myself.
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

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