Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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Scared of the future

Discussion in 'General ME/CFS Discussion' started by jengonwin, Jul 15, 2016.

  1. jengonwin

    jengonwin

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    Hello.

    I have had CFS for along time which was mild at first and now pretty bad that i am in bed for most of the day.

    One thing that has been bothering me, is thoughts of the future. I see healthy happy people come down with cancer, heart attacks etc. I am chronically ill, so the chances are that this will happen to me in the future.

    I am terrified of losing my dignity, and ending up pinned to a hospital bed as a nurse wipes my backside.

    If only if the government permitted an exit button for the worst case scenario. For example you have a stroke and end up severely disabled with 0% quality of life. If such a button was real i could live everyday to the best of my ability with no anxiety or fear.

    Does anyone else have this fear? I do not want to suffer unbearably for months/years followed by a slow gruesome death. Right now i am OK and feel stable, but i can only imagine that it will get worse over time. Especially since healthy people suddenly get MS etc. I have brainfog 24/7 so the odds are against me.

    Thanks
     
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  2. taniaaust1

    taniaaust1

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    I have fears of being bedbound again without any support, so basically left to die fears (much of my fears was cause I feel like I was basically left to die when I got very sick in the past) which I think are a bit different to what you are refering to here. I can cope "ok" with being bedbound as long as I have my needs met to survive it okay. There are many enjoyable things people can do in bed, people can adapt to that life, get new hobbies etc etc

    I wasnt much of a fan of TV or movies but became one after being stuck in bed so much and learnt to really enjoy some of these. One can learn to enjoy the simple things in life more eg how ones room looks or whatever.

    I think a person can get used to after a while of others having to doing things like say having to wipe your butt as it can just become part of ones normal life so one stops thinking about it much esp if its a nurse. A quadruplegic guy I used to look after I personally dont think he no longer worried about such things. People adapt to things.

    Even someone who is completely bedbound can have some quality of life as long if they also have support. This thou also does depend on symptoms eg severe pain certainly can completely take away someones quality of life if not medicated enough for it.

    cancer is also a big risk for healthies....

    Unless you are getting serious ME complications showing that your body is actually being damaged, I personally suggest not to worry about things like this. Who knows, maybe they will have something to treat us in 5 years time.

    Maybe some counselling would help you.
     
    Last edited: Jul 15, 2016
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  3. jengonwin

    jengonwin

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    I think it is a real risk. I mean our bodies are not working very well. Who knows if we suddenly have a stroke or not?

    What if you had a stroke and were severely disabled from it but couldn't do anything about it. A prisoner being tortured.

    I wouldn't mind a psychologist. But i would have to find someone that believed my illness.
     
    Mel9 likes this.
  4. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Sudden death is actually the last of my concerns, I thought a fair lot of it before i came down with ME, but now im relaxed about it. It`s the circle of life. As for potential suffering, we can not pick and choose our destinies. Thinking about such is just detrimental for our minds. I agree however that assisted suicide should be available for those scenarios you draw.
     
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  5. Paralee

    Paralee Senior Member

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    Washington state has a law allowing a way out. I think it has to be something incurable and you have no hope. I'm relating this to that young lady that found out she had incurable brain cancer. They had to establish residency and get a prescription for a certain drug. They emptied all 30 of them in a glass of something (water?) and as they talked (husband) she went into a blissful sleep in about 30 minutes.

    But legally allowing it sounds like a double edge sword. There will be some kind of legal loophole (and someone will find it) that might take you before you want to go.

    I would like the right but at the same time it can be scary.
     
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  6. *GG*

    *GG* Senior Member

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    I have concerns with giving the State/Gov't that much power. We see so many abuses, what makes you think this would not eventually Progress to a horror show as well? Perhaps if a cure is not found, we will be encouraged to end our lives, especially if the Finances of our Societies become more limited!

    Maybe we can form Underground groups to be "Angels of Death". Wonder if Drs who perform such services really do not carry a burden for helping people die?

    GG
     
    Paralee likes this.
  7. ebethc

    ebethc Senior Member

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    I have the same thoughts... you're not alone, and I don't believe that it's unusual at all...i've been on a push-crash cycle for years, and even though I'm coming out of a crash, I'm overwhelmed by the thought of putting my life back together. I still feel crummy some days & OKAY-ish the other days.. I've always felt like the phoenix (no, I did not name this website!), and lately I just feel like I've been kicking the can down the street.. not a phoenix at all.. just a pathetic, delusional can-kicker...

    Here's a psychologist who was recommended to me b/c she specializes in treating chronically ill patients.. I didn't see her, so I can't tell you much. She's in San Francisco, and I don't know if she does skype or could recommend someone in your town:
    http://tamara-greenberg.com/

    here's a buddhist-inspired book by someone w CFS
    https://www.amazon.com/How-Sick-Bud...TF8&qid=1268156985&ref_=sr_1_8&s=books&sr=8-8

    best of luck.
     
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  8. OkRadLakPok

    OkRadLakPok Senior Member

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    It scares me, too. I find a lot of the answers to be platitudes. I guess what bothers me most is the amount of time I spend and spent fighting and then knowing in the end, it really was not worth the fight. This kind of fight ought to result in a cure for AIDS or creation of peace or something like that. But in the end it was a lot of suffering and toil for nothing.
     
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  9. ebethc

    ebethc Senior Member

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    it's incredibly discouraging..... and it's a marathon.. i.e., it's not like when you rip your acl, go through surgery, grueling rehab, and when you've recovered you wear a knee support to the gym or whatever. it's brutal, but you get through it... cfs just goes on and on...

    the advice is so situational... imo, alot of the books are written by ppl who have a strong support system (e.g. a spouse or family who's footing the bill, providing emotional support, etc.) I don't know how much those ppl have to teach me, personally.
     
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  10. OkRadLakPok

    OkRadLakPok Senior Member

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    \
    I don'tmean to be so grim but I have suffered for 35 years and had ALL the ups and downs of that dreaded master of lies, Hope. Indeed, I thought I could recover without all those supports you mention, a nice spouse, a house which I thought would somehow be provided, money for drs etc

    But no. And all those other things like surgery and knee braces? Well, I had an accident and guess what. Not only MCS etc but rehab and knee braces and foot brace on top of it all AND no stable home or spouse or money and had to dro pout of rehab because of not having those things so now accident pain on top of MCS ME.

    AND I am not even 50.

    Yes, I agree with OP. I have no hope for future and am scared shitless of it. I have stopped talkingin public completely because it is too difficult for me now. I wear headphones and pretened I do not hear them.
     
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  11. ebethc

    ebethc Senior Member

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    @OkRadLakPok --- agreed... I'm a long time cfs-er and feel hopeless and scared right now. The only time I feel depressed is when I feel like I'm out of ideas... I'm at about a "7" now and could go back to work, but I've been unemployed a long time and am old at this point, so I'm getting NO bites re work... The effort & stress is making me slide back down...

    BTW - I was comparing an injury to cfs to make the point that cfs goes on forever - even if in re-mission... by contrast, an injury is can be transient
     
  12. digital dog

    digital dog Senior Member

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    I will never let myself be too ill and incapacitated to be relying on someone else (unless, god forbid, I am in an accident). I will take matters into my own hands whatever this entails.

    I have no fear of death, just being denied my choice of exiting.
     
  13. OkRadLakPok

    OkRadLakPok Senior Member

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    That is what happened to me....an accident. It has been hell. I can still choose and almost chose the end on the 11th but I am glad I did not.
     
  14. PNR2008

    PNR2008 Senior Member

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    I can empathize. I've had CFS/ME for 28 years, FM/POTS 25 years and guess what? Three months ago I had a heart attack. Never any regular heart problems but this was serious and I thought this could be my way out.

    Well it turned out to be Takotsubo or Broken Heart Syndrome and I am recovered but here's the rub, it's not unusual to be brain-fogged, depressed and exhausted for at least 7 mos after. This on top of what I regularly deal with is a sin. I am getting better but very slowly. It's enough to say, "What do you want from me?"

    So what do I have to look forward to after my heart totally heals, my regular sick self. Yea! I can't wait and what usually causes Takotsubo Myocardiopathy is stress. I can get it again! Financially I'm ruined, I can't think straight taking 3 extra heart meds, seeing more doc's that don't want to talk about depression, fatigue and brain-fog is always delightful but the big winner is I'll just be the same. I'm supposed to happy about that.
     
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  15. OkRadLakPok

    OkRadLakPok Senior Member

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    Here is a good quote by Plutarch on the Life of Pompey the Great. He had just conquered all sorts of places, like Alexander:

    "How happy would it have been for him if he had ended his life at this point, up to which he enjoyed the good fortune of Alexander! For succeeding time brought him only success that made him odious, and failure that was irreparable. "

    WHen I read this I almost fainted. The failure part has been my life for decades.
     
  16. jengonwin

    jengonwin

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    I already rely on others.

    Death is no problem. SUFFERING is.
     
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  17. Gingergrrl

    Gingergrrl Senior Member

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    @PNR2008 I am so sorry to hear that you had a heart attack and I have recently been reading a lot about both Kounis Syndrome (allergic angina- which is happening repeatedly to a close friend of mine) and also Takotsubo Syndrome, usually triggered by an extreme stressor or shock like you said. How did the doctors determine this was what you had (vs. a traditional heart attack?) and what was the treatment?

    Please reply via PM if more comfortable (and please don't reply at all if uncomfortable or not feeling well enough). Am SO sorry to learn of this and thankful you are okay even though this adds more pain and symptoms to deal with. Can't we ever catch a f*ing break?...

    ETA: I liked your post for support, not b/c I liked what you said.
     
    Last edited: Jul 27, 2016
  18. Hugo

    Hugo Senior Member

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    I dont think so.. the countries that have this like Netherland is pretty far from that. They have about the same amount of assisted suicides that they had when they implemented the law.

    Euthanasia in the Netherlands is regulated by the "Termination of Life on Request and Assisted Suicide (Review Procedures) Act" from 2002. It states that euthanasia and physician-assisted suicide are not punishable if the attending physician acts in accordance with criteria of due care.[1] These criteria concern the patient's request, the patient's suffering (unbearable and hopeless), the information provided to the patient, the absence of reasonable alternatives, consultation of another physician and the applied method of ending life.[1] To demonstrate their compliance, the Act requires physicians to report euthanasia to a review committee
     
  19. jengonwin

    jengonwin

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    Its about LIVING not dying.

    Once you know you have an exit route you can live knowing you have a CHOICE. Many who illegally procure such methods never end up using them. Those that don't have a choice end up hanging themselves in fear they wont get a chance later.

    Anyone against euthanasia either has certain (selfish) beliefs or has financial interests (hospitals, drug companies etc).

    Imagine if you had the right to a legal painless death? Goodbye billions of chemotherapy profits for conditions that are terminal.

    I was born into a toxic world without my permission. I never signed a waiver i was forced like everyone else. I didn't choose to have certain SNPs or to develop debilitating health issues. So if there is anything i get to choose in life, then i am going to do so if it comes to that.
     
  20. jengonwin

    jengonwin

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    I am so sorry. I hope you have at least something in life to look forward to.

    Life really sucks. We are on a giant ball floating through the universe. Doesn't make sense at all really. And the worst part is you feel invincible until you get sick. Then its pretty much game over. No respawns.
     

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