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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How to get through this

Discussion in 'General ME/CFS Discussion' started by digital dog, Jun 18, 2016.

  1. digital dog

    digital dog Senior Member

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    I have been ill for eighteen years. I have in the last three months got a great deal better. I attribute this to coming off all the drugs I was on. Some days I have been feeling nearly normal which has been so very very beautiful. Insomnia has been significantly worse but for the first time in my entire adult life I have had hope and a bit of happiness. I started to think I might be able to live.

    Then I get a stomach bug. My partner gets it a week after me. We do not know where we got it from.

    My partner recovers in five days and I am still sick two weeks later. I am no longer throwing up but I have nausea, low energy, IBS and feel depressed.

    I realise this is what we go through every day (and worse of course) but I was getting better. It had only taken me eighteen years!

    I wake sick and low and it is a different sick and low to normal (it is only since this bug) and to be honest I cannot even begin to describe my sadness, anger and fear that this is now my normal...again!!!!

    I simply can't have tasted health for a month or two to have it ripped from me by a stomach bug. I can't . I just can't mentally accept that.

    I now think of suicide and it has taken me four years to overcome that.

    I mean what is the effing point of it all if something can come along and rip everything from you.

    HAs anyone had a sickness bug (24 hour being sick) and taken a long time to recover but recovered? It is the depression that is worrying me. Im used to all the physical shit. I don't want to hear from people who never recovered as it would tip me over the edge.

    All these feelings started on the first day of the sickness bug. I couldnt stop crying and it hasn't stopped.

    I feel like giving up. Every day I wake and feel bad from this bug and all I can think about is how I wished in the USA and could get a gun.

    I just want to reiterate, I was the BEST I HAVE EVER BEEN before this bug.

    There is no point in me living now.
     
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  2. Skippa

    Skippa Senior Member

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    I liked your post to show my support.

    To answer your question... YES I have been through exactly this. I got norovirus at the start if this year, and apart from 48 hours of sheer hell in the bathroom (THAT is the point that I wish to die, I cannot stand the urging and retching pains every half hour) it took nearly a month to "recover".

    There are 2 sides to the awful depression and sheer lowness we feel.

    (Oh, i've read other accounts of pwc taking far longer than normal to recover from these things, and even 'healthy norms' can get wiped out by it for ages - look in mumsnet I think it was).

    The first side is illness behaviour setting in (the unavoidable physical side) whereby your body winds down to 'help' you recover. Depression kind of keeps you out of trouble and energy is needed elsewhere.

    But THEN you despair 'cos you are a pwc and wonder how much more of this crap you can tolerate, you are a sick person after all and you cannot help it.

    BUT... these things, as ever, DO begin to subside... I bet you will notice SOME (if not all) returns to baseline before the month is through, as did I...

    Yes it happened to me too and I am still here.

    Don't get 'stuck' in depression by accepting your body's low treachery as your actual mental state.

    Ps, what drugs did you leave behind might I ask?
     
    alkt, taniaaust1, Mary and 2 others like this.
  3. Rvanson

    Rvanson Senior Member

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    Perhaps you will get better. It sounds like this was recent. You have not given yourself some real time to get better
    yet, IMO.

    As for using a gun, that is not a surefire way to kill yourself. I own a firearm, but I wont resort to using it to kill myself.

    Guns seem to be so deadly in the movies, ( "The Walking Dead" TV series is mostly BS. Most people could not make all those head shots while moving) but in real life, they are not as deadly, and many Americans cannot or never learned to shoot very well.

    A good long knife up close, is much more deadly then a gun. As a person who hasn't grown up in a country
    where guns are commonplace items as I have, living in America, I can see that you must think otherwise.
     
    Skippa likes this.
  4. digital dog

    digital dog Senior Member

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    Thank you so much Skippa. This is EXACTLY what I needed to hear,,,that it can take a month. I have been losing hope but it has only been two weeks. I think it is paranoia but then I have only ever had setbacks until the last few months on this journey so it is easy to be paranoid.
    I will not judge anything for another two weeks. I needed very much to read your post, Thank you.
    Thank you Rvanson. I appreciate you taking the time to post. I don't own a gun, never will and too ill to go to USA. I just need to get over this bug...if Im going to get over it.

    I have taken a lot of drugs Skippa. Mostly sleep meds (zolpidem and klonopin). I have also taken a lot of antidepressants at different times. A few months ago I wrote down every drug I could ever remember taking and different drugs for surgeries etc. It was eye opening and made me realise that I have never really been off drugs during my illness. Then I researched more about how these drugs affect my body and decided it was time to throw in the towel. It has been a revelation. I felt so much better. I think my GABA receptors are healing. My insomnia is worse but also it is a different kind. It is more severe but it has a different pattern. I know it is improving which sounds paradoxical but some days now I sleep and wake refreshed....that has NOT HAPPENED FOR DECADES really. Until this bug of course...
     
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  5. Deltrus

    Deltrus Senior Member

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    I get depression every time I recover and then get worse again. It is completely logical as well. You suffer for so long, getting better is like finding love, and then it is torn away from you.

    You can persevere, you have the skills to deal with all this fucked up health shit. You are a veteran. Do the things that can give you slight improvements in health. Distract yourself from the present as best you can. Don't think about life, just LIVE.
     
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  6. cmt12

    cmt12

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    The hope you are clinging to now is not serving you. It's fragile and shallow. The despair you are feeling comes from losing your grip on this past hope that you are still very much attached to and not trusting that you will find a better hope if you let go and face the painful truth FULLY.

    If you've been enduring illness for 18 years, then you definitely have enough resilience that you can trust in to get beyond the place you are in now, rather than repeat the same pattern and find yourself in this same place in the future.
     
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  7. parabola

    parabola

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    I am in a somewhat similar position. I first tasted wellness with steroids and Elemental diet (both things I can't stay on long-term), so I finally knew I wasn't 'broken' and that the ability for me to feel well exists. This obviously applies to you too, so try to hang on to that thought! You know now that your body has the capacity, which is so much more hope than others ever get.

    Four years on and I get brief periods of getting well, then something sets me back (usually a cold about once a month, from living with someone who works with kids), of something upsetting my Crohns. I understand how soul destroying it is, but I.keep myself busy by always researching what to do next, I always have a list of things to try. So while I'm waiting on time to do its healing, I can feel like I'm doing something constructive, and hopefully find something to speed up healing too.

    You could look into best ways to heal from gastroenteritis (probiotics etc) you could consider a short course of elemental diet to rest your gut (I recommend this to everyone but, I swear, it's awesome on so many levels). Please don't give up!
     
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  8. digital dog

    digital dog Senior Member

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    I will look into the diet. Thank you parabola.
    I do realise that I am very lucky that I have tasted health and I know others would give anything for that experience.
     
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  9. geraldt52

    geraldt52 Senior Member

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    I think this is one of the signatures of CFS actually. Whenever something is going around, I never get as sick as everyone else seems to, but then they are better in a week, and I'm still trying to recover a month, or two, later. My wife, who also has CFS, reacts exactly the same. I wouldn't make the mistake of going back on the drugs you were taking, thinking that they were helping...they probably weren't.
     
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  10. digital dog

    digital dog Senior Member

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    I will NEVER EVER on pain of death (literally) go back on drugs. They ruined me. One of my greatest fears is needing surgery (car crash is my greatest fear). The anaesthetic would be the end of me. I am terrified of the menopause as I react so badly to hormones. I react badly too everything except I am ok with pain meds for some strange reason...I only take paracetamol and the odd codeine (once a month).
    They most definitely DID NOT HELP ME.
    Thank you for your post Gerald.
    * Just for the record I do appreciate that a lot of people on PR get great relief from drugs and they are life savers. I have very odd reactions and I am a very odd case so please do not think I am bashing people who HAVE to be on drugs and who CHOOSE to be on them to make life a little more bearable.
     
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  11. Mary

    Mary Senior Member

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    @digital dog - I'm truly sorry you're having such a rough time. I can completely relate. It's horrible, it's not fair and after getting a taste of health it is enough to make you want to scream.

    I don't think your health has been ripped from you - I think you will recover, unfortunately it does take longer for us to recover than others. I'll be sick for weeks from some mild sinus thing that wipes me out and someone else is over it in a day or two - argghh!

    I had an intestinal problem actually for a couple of months (bowels were liquid), SIBO and other tests showed nothing wrong - hah! Anyways, after trying several different probiotics, I stumbled across Trader Joe's kefir and it worked like magic. So you might give kefir a try, it sounds like your body is trying to repair itself but it needs some help.

    Anyways, I don't think this is your new normal, I think you will get back what you had just recently, a stomach bug can't take that away, it will just take some time. if it makes you feel any better you have lots of company! And, I have made some progress in the last couple of years that I have not lost, even though temporarily it will feel like it perhaps because I get sick or I'm detoxing or whatever, but I do keep getting back to my better state and I know you will too --
     
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  12. kangaSue

    kangaSue Senior Member

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    I hope it's not the case for you but I've heard this scenario said dozens of times at https://www.inspire.com/ in the AGMD GI Motility Disorders group in describing what can be the classic rapid onset of viral idiopathic gastroparesis. Best case scenario is that it can resolve within 6 months, some take up to 3 years to get over it but the majority never fully resolve at all and can be quite debilitated by it.

    It can have an antibody cause for some, Autoimmume Gastrointestinal Dysmotility
    http://www.mayoclinic.org/medical-p...ces/autoimmune-gi-dysmotility-a-new-direction

    An elemental diet for a couple of weeks to rest the bowel is a good idea to try.
    http://www.siboinfo.com/uploads/5/4/8/4/5484269/homemade_elemental_diet_options.pdf

    It's known that gut dysbiosis can cause a feeling of depression which can be helped with the use of some probiotics.
    http://gutpathogens.biomedcentral.com/articles/10.1186/1757-4749-5-5
    https://gutpathogens.biomedcentral.com/articles/10.1186/1757-4749-5-3
    http://gutpathogens.biomedcentral.com/articles/10.1186/1757-4749-5-4
     
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  13. taniaaust1

    taniaaust1

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    hi digital dog, I think it would be wise not to go setting a set time to recover from the bug otherwise you may find yourself feeling terrible if you arent over it in 2 weeks time.. what if it takes 6 weeks to recover from. You dont know, what you do know thou is it probably will take you longer to recover from then a healthy person and you do know that you've also seen now that you can start improving. Maybe focus on that hope and dont put set times on when it will happen.

    best luck
     
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  14. TigerLilea

    TigerLilea Senior Member

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    @digital dog There was a virus that went around my area over the Christmas holidays. A friend of mine and her partner both got sick at the same time. He recovered in a week - it took her four months. And neither of them have CFS. It always takes me weeks longer than most people to recover from colds or bugs that are going around. It's only been two weeks so be patient - chances are you will recover, but just not as quickly as you would like it to.
     
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  15. Skippa

    Skippa Senior Member

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    You've also got to factor in all the withdrawal syndromes and tolerance adjustments from the drugs you left behind too.

    They will have messed about with a whole bunch of receptors in your brain and this simply takes time to put right. But... It DOES put right in the end :)

    One important thing I learned is that not all withdrawal/tolerance adjustments happen at once, a new symptom can crop up after a month, then another in another time frame...

    So this bug has come along at a particularly fragile time for you... it sucks, it takes time, but it WILL adjust back to 'normal' - then you can work on how much recovery you have truly made from CFS and what more you can tweak :)

    IMO
     
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  16. alex3619

    alex3619 Senior Member

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    It can take me six months or more to recover from a flu.
     
  17. Skippa

    Skippa Senior Member

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    Actually, it's funny you've come to this conclusion recently @digital dog because I'm currently wondering how much my chronic use of SSRIs and anti-histamines are contributing to my CFS.

    I can't go without them though, being stuck between a rock and a hard place...

    So it's a mega plus for you being able to leave the drugs behind :)
     
  18. digital dog

    digital dog Senior Member

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    Thank you for all these replies. I am gaining strength from them and I will try not to get too concerned for another few weeks...angry and pissed but not concerned.
    Skippa. I had chronic fatigue for 18 years. I have been off the drugs for six months (totally except for the odd paracetamol and codeine) and I am not tired anymore. I can't sleep which is the other spectrum of tiredness but it is AMAZING to have some energy.
    Why do you feel you cannot be without the drugs? I wonder whether you could actually tackle this.
    I know so many people who were fighting fit, went on SSRI's or tranquillisers for minor problems and are now disabled or diagnosed with a mental disorder. Every year they get sicker and sicker.
    I was sooooooo sick (still am sick). I was diagnosed with ME (I doubt I have that now), bipolar disorder, thyroid issues (mine has stabilised somewhat without meds) and I have felt like death for almost two decades. I have lost a life to drugs.
    How old are you Skippa?
     
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  19. Skippa

    Skippa Senior Member

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    @digital dog I'm 38.

    Been on and off SSRIs for 14 years, currently about 7 years in a row, a couple of attempts to wean off have plunged me into pure hell, I'm not ready to write off another couple of years in mental torture just yet...

    As for the anti-histamines, it's all I can do 'cos I'm allergic to just about everything in the environment (confirmed by bloods, which made the doctor laugh 'cos apparently it's the longest list of allergies he's ever seen he couldn't fit it all on his computer screen).
     
  20. caledonia

    caledonia

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    @digital dog @Skippa
    I've done some research on medications and the mitochondria recently. There are several drugs which will negatively impact the mitochondria (thus producing fatigue).

    mirtazapine, trazodone, amitriptyline, citalopram, fluoxetine, possibly sertraline

    Antipsychotics: chlorpromazine, fluphenazine, haloperidol, risperidone, quetiapine, clozapine, olanzapine

    Anxiety medications: Every benzodiazepine, including alprazolam, diazepam

    There are many others, from every class of medication. Statins are particularly bad.

    This is a widely quoted paper on the subject:
    http://psychrights.org/Research/Digest/NLPs/DrugsCauseMitochondrialDamage.pdf
     

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