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Is it really worth the fight?

Discussion in 'General ME/CFS Discussion' started by digital dog, Nov 3, 2015.

  1. digital dog

    digital dog Senior Member

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    I have tried so many things to improve but nothing helps.

    Everything I try makes things worse and I do not think that time will miraculously make me better. I had a good week last week, started to dream about living a relatively normal life but then I realised it was only because I had a cold (which happens once a year maybe).

    I am now back to chronic exhaustion and all the other wonders that CFS entails.

    I try so hard to remain upbeat, to live a worthwhile existence regardless of my health limitations but it has just dawned on me that I will probably never have a job that gives me any satisfaction, social life, hobbies, friends etc and I may wake up for the rest of my life in pain, tired, nauseous etc.

    I don't know where to turn now and I don't know how to accept this half life, this life that is often torturous and a life that has slowly but surely eroded my self esteem and worth and everything I held dear to me.

    If you are healthy but not happy with your life there is so much that you can do but I feel trapped. I see life, want to grasp it with open arms and never give up trying to change things but what happens when you hit a brick wall every time? every. single. time!

    Do I just exist? Is that what my life has become? An endurance test?

    I fantasise about getting a terminal illness.

    Sorry if this is hard to read. Just the truth and wondered if any of you feel the same.
     
  2. Invisible Woman

    Invisible Woman Senior Member

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    I'm sorry you're feeling so bad. I think we all feel like this at times and you have articulated it beautifully. It sometimes seems that you have to dig deep psychologically when you are feeling at your worst. I think these are the times when we feel most alone. You aren't, it just often feels that way.
     
    Last edited: Nov 3, 2015
  3. John Mac

    John Mac Senior Member

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    Sorry to hear you are feeling so down digital dog.
    My only words of support at the moment is that I think that for the first time in many years hope/help is getting nearer.
    With the Rituximan trials and the potential change of direction at the NIH things are starting to look up.
    I myself are really just surviving in the hope of better days to come.
    We just have to hang in there and unfortunately remain patient.
     
    Mary, Andielyn, MEMum and 9 others like this.
  4. SOC

    SOC

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    Sorry you're in one of those blue moods most of us with chronic illnesses fall into at some point or another. Living like this is difficult beyond the ken of mortal men. :hug:

    I find the most helpful mental reminder is that there is no certainty whatsoever that where I am now with this illness is where I will be forever. Constancy is not a feature of this illness. Things change. The future will be different.

    It also helps to focus on what I do have and how to make the most of it instead of focusing on how much I don't have. Making the most of the now is no compensation for what I have (and likely will) lose, but it gives me something positive to focus on, which helps avoid the downward emotional spiral.

    And finally, many PWME are getting some improvement over time, mostly under the care of top ME/CFS specialists. I'm not talking cure, but quality of life improvements make a big difference in our world.

    Five years ago I was bedbound, unable to shower without suffering a PEM crash. I couldn't even read a book. Life was pretty much just lying in bed watching the birds through the window. Now I get out for at least 4 hours every day. I tutor 25-30 hrs a week. I shower every day. :thumbsup: I do my own shopping and cook and clean for myself. I can't do much else, like have a regular social life. I doubt I could hold down a regular job that didn't have the flexibility that being a self-employed tutor does. I'm certainly not able to work at my chosen profession as a research engineer. But life is a WHOLE lot better than it was 5 or 6 years ago. I'm glad I didn't give up then. Good things have happened in my life since then that I wouldn't have wanted to miss.
     
  5. skipskip30

    skipskip30 Senior Member

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    Im finding things hard at the moment after a relapse 3 years ago so I can understand what you mean. Life is really really tough, just trying to stay occupied and not go crazy is my biggest challenge at the moment as I can do so little.

    The thing that keeps me going is that vague glimmer of hope that we will get help or a cure in the future. Theres also the chance of the illness just improving on its own. Its not much but thats the thing i hang on to
     
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  6. TiredSam

    TiredSam The wise nematode hibernates

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    Been feeling a bit fed up myself lately, that gives me hope. Teaching 20 hours a week is my absolute limit at the moment, no shopping, cooking or anything like that. Nice to hear that change upwards is possible. And yes to focusing on what I have and can do now, that keeps me cheerful most of the time. I rarely dwell on what I've lost. But then I haven't lost as much as many so that's easy for me to say.
     
  7. beaker

    beaker ME/cfs 1986

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    http://www.meaction.net
    Hi.I'm sorry you are afflicted w/ this plague. It sucks.

    I've been at a while -- going on 30 years mostly in bed, always in pain. Treated horrifically by some. Just saying so you know my experience a bit.

    I don't know how long you have been ill, but it sounds like you are not coping well and could use some tools. There are many ways and many choices and it is usually a mixed soup w/ maybe one way more prominent than others.


    You say that unhappy healthy people have "so much that you can do" .
    So do you.

    First there is the external items:

    ~Externally, having a good support system ( like us at PR ;-) , find some fellow suffers closer by that you can connect to and talk with. A doctors office, independent living center, a support group meeting ( for this or really for any chronic illness w/ similar challenges-- like MS or Lupus -- I find people are welcoming even if your dx is a bit different . Get a phone buddy for the days a forum or meeting is too much or not available.

    ~ A good medical team. Again, this may be limited by where you are at. But even if you can find a dr. who is open minded and willing to read that's a great thing. Maybe you can afford to travel to see an "expert"

    ~Educate yourself on this plague best you can, brain willing. If you don't care enough to learn why should anyone else. Offer to share this knowledge w/ those around you who care and are willing. They may not want to read up on studies, but the might be interested to know that there was a fantastic announcement by the NIH lately. Stuff like that.

    ~Consider Advocacy. You can be a patient advocate from your bed. Here, FB, Twitter. MEAction Networkis a central place for lists of advocacy projects. Make one of your one. Put up a screening of "Forgotten Plague" documentary. The list goes on dependent on your personal abilities and desires.

    ~ blog or journal for you or to share.

    ~ a cat is a wonderful companion to care for. If you can't afford a pet, but have the space and energy to care you could foster a cat or two for your local shelter. Most adult cats need food and a safe place and a little TLC. Low key. My best friends on this journey.
    ~
    Well I'm sure I could come up w/ others but that's all my brain will allow for external list for now. Perhaps others will add to it.

    The Internal choices :

    Here's some thoughts/ choices/ whatnot that helped me along the way.

    I used to define myself by my work, and what I did and all that you listed above. In fact I considered "independent" to be one of my defining traits. ha. I learned to see that I was more than that. We all are. Making a choice to redefine myself was a good place to start.

    And that there are things, so amazing and beautiful that they are more important to me than this disease and it's many tortures. Bounding that, "Thing of Beauty" ,as Keats would describe it,to myself. It may be different for everyone. You can make a choice to look for it, for your something more important and use it.
    It's not easy to do. But for me, it has been more than worth it.
    Yes, I still have bad days/weeks, but I know they are in passing. They are feelings that are normal that need to be embraced and experienced and then let go.

    Some people I know try to block this out. A bit of numbing of the pain of this awful experience. If you choose this method, you should know that if you block out that bad, you will also block out the good. It can be used as a good temporary measure though. As long as you control it and it doesn't take you over.
    The same w/ a bit of denial. It can be a good thing as long as it is used in small measure and you are in charge of it.

    If you feel something own it. Feel it. It's ok to be sad, to cry and to be angry. Give yourself permission to feel down. To have days like you are having today. It's healthy. But don't let those feelings get you, anger is exhausting and it doesn't change anything for the better. And feeling down can start to own you.
    Feel them, express them in a safe way and let them go until they come round again. And they will. But you have the knowledge that you can get through it. You have already.

    Get some help on this journey. Coping is not something that you do and it's done check it off the list kind of thing. It's ongoing and dynamic. A good counselor ---yes there are those( at least here in the US) that understand this is a serious illness and will help you on your journey -- w/ coping skills , support, validation, etc..

    My brain being what it is, is fried. I hope I haven't made it sound too simple. IT's not. It's hard work. All of it.
    But worth it. And there are many little lights shining from the end of the tunnel right now research wise. Keep a candle nearby ( don't leave it lit when you are sleeping or at all maybe) just to remind you of that.
    In fact lots of little things around you to remind you of what is important to you help.

    Best,
     
    Tulipa, Andielyn, Mij and 5 others like this.
  8. Effi

    Effi Senior Member

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    hi @digital dog so sorry to hear you're struggling. Lots of good things posted by others already. Just wanted to say that I can really relate to what you wrote. On some days it could've been written by me. You're not alone. Always remember that. We're all rooting for each other, wherever we are. :hug::hug::hug:
     
    Mary, Andielyn, Hutan and 6 others like this.
  9. whodathunkit

    whodathunkit Senior Member

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    Just chiming in to say I'm sorry you're feeling so blue. It sucks beyond all suckage to feel like that. I've been there. Not bedbound, but not able to do anything more than the bare necessities, and most times barely that. And deeply, deeply depressed in addition to the physical fatigue. A half-life, for sure. I never fantasized so much about terminal illness but rather about doing my own self in, every single day. In a variety of ways. Multiple times per day. But now I'm very glad I didn't give in to it all.

    There isn't much to say that hasn't already been said well in this thread, but for what it's worth, NEVER, EVER GIVE UP. :) There's a good chance that you'll find something that will make a significant beneficial improvement in your situation if you don't. But if you do, you'll never know and at times wonder what could have been.

    Short answer: Yes. :thumbsup:
     
  10. adreno

    adreno PR activist

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    Having little life is better than having no life at all.
     
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  11. Esther12

    Esther12 Senior Member

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    Best to focus on the things that we know we can achieve something with (however small) rather then spending limited time and energy on health interventions with no good evidence of improvement. Sorry things are hard for you right now.
     
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  12. ahmo

    ahmo Senior Member

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    I'd guess that I have this inner conversation at least once a week, Why bother? And this is me as a relatively well person, having come to a comfortable equilibrium after 3 years of hard slog healing efforts.

    I'm fortunate to have had a belief system before my illness that supports me now. That is, I am not my body, not my mind, but a consciousness that is most accessible in a moment of silence. I might not be able to string together too many of these moments in any day, but I know that there is a space, in between, or behind, or beside my thoughts or pain or anguish, a space of peace. Mindfulness is about opening to these moments. Tara Brach is an excellent teacher.

    Last year when I was at a similar place as you, I found some other helpful resources, which I'm adding below. I haven't revisited them, hope there's something useful. pr is a place where we truly know your pain.:bouquet::hug:

    You can watch this thread for a random dose of inspiration.
    http://forums.phoenixrising.me/index.php?threads/quote-of-the-day.548/page-12#post-659733

    tarabrach.com

    http://www.wisebrain.org/tools/articles/neurodharma

    http://tinybuddha.com/blog/3-reasons-to-stop-worrying-about-your-negative-thoughts/

    http://www.threeprinciplesmovies.com/


    https://www.psychologytoday.com/blog/turning-straw-gold/201107/4-qualities-mind-alleviate-suffering

    https://www.psychologytoday.com/blog/paintracking/201303/dbt-skills-pain-relief

    https://www.psychologytoday.com/blo...ectic-pain-synthesizing-acceptance-and-change

    https://www.psychologytoday.com/blo...ars-out-my-favorite-turning-straw-gold-pieces

    https://www.psychologytoday.com/blog/paintracking/201208/mack-truck-mornings

    https://www.psychologytoday.com/blo...ntrasting-smart-alternative-positive-thinking

    https://www.psychologytoday.com/blog/turning-straw-gold/201502/how-talk-yourself

    http://www.tuberose.com/Conscious_Living_and_Dying.html
     
  13. digital dog

    digital dog Senior Member

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    These are all sensible and rather lovely messages. Thank you all so very much.
    I won't write much as I am too tired but just wanted to say that it is nice to know that I'm not alone.
    I may actually get a cat (thank you Beaker for that suggestion) but responsibilities stress me out and Im not sure I am well enough to handle an animal. We had a dog but due to my health we had to re-home him (to the most wonderful home in the universe thankfully). I am very scared that it will be another thing I fail at.
    How much work are cats? I LOVE animals but Im just not sure I could handle having one...another thing I grieve over.
    I would like to meet other people with ME but I went to a support group here in the South West and no one turned up. When I lived in Australia the support group was excellent. A really positive experience. I need that now (dint need it so much then) but its so hard to meet anyone. I think, perhaps, Uk support groups can be a tad depressing.
    SOC I am so glad you are doing better.
    I am so lucky that I am not severe. I do know how lucky I am but life is still so disappointingly unfulfilling.
    The world is so bloody beautiful and yet I cannot be a part of it.
    :thumbdown::cry::(
     
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  14. CantThink

    CantThink Senior Member

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    I would tend to agree. I went to a few as a teenager and they were a bit depressing. I don't know why - maybe because there was no theme or focus. Everyone just moaned - which I totally understood/understand, but it can be quite draining after a while.

    As others have said, many times I could have written what you did. I often have said to my mum: what's the point of me? I'm just existing and often also burdening. It's so easy to feel hopeless and guilty with this disease.

    The main thing is to find a way to have hope, I guess. I let myself be when I need to and accept that sometimes my life is so awful that I will not have hope and I just need to ride that wave until a fresh one comes along that is hopefully better.

    I have found art and writing to be therapeutic. Perhaps you can find a hobby that it is possible for you to do and you can use it to focus your mind.

    If you foster cats they are not your constant responsibility - so that would be easier than taking on your own cat. The issue for me would be protecting my heart from getting too attached!

    Another option - Guinea pigs are fairly easy pets to manage and you can cuddle and stroke them. They have adorable personalities. They do need cleaning out once a week though, so that might be too physically strenuous. My friend has hers in an apartment in indoor cages.
     
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  15. digital dog

    digital dog Senior Member

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    Thank you Canthtink,

    Im not sure about guinea pigs. My brother had them and they seemed an awful lot of work. They were in the garden every day before work all weather.

    I was meant to go to an art class but it is in the evenings (end of road) and I am just so tired with the clock change. Perhaps I can talk to the lady running it and ask if I can come when able. That might be a good compromise. It's just I have spent SOOOO much money signing up for things and then cancelling. I just cancelled a course I was meant to be doing and lost a lot of money. I always love the sound of the courses but the reality is I am too sick to do them.

    I think I need to accept life is awful sometimes like you said. Go with it, flow with it and wait for the next wave of optimism to break. After twenty years this is hard.

    Thank you for your support.
     
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  16. justy

    justy Donate Advocate Demonstrate

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    so sorry you are going through this right now - I understand - I visit that place regularly myself. Sending hugs as I have no advice to give you.:hug::hug::hug:
     
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  17. acker

    acker

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    totally hear ya, dd
     
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  18. Countrygirl

    Countrygirl Senior Member

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    Me too! It is a battle we all fight and we just have to keep truckin', especially when we become overwhelmed with illness and pain. Life is still worthwhile if we support each other and do all we can, even if in a limited way, to make the situation a far better one for younger and future victims of this dreadful disease. That alone gives our lives value and is a very important reason not to surrender.

    Hope your situation improves very, very soon and I'm so sorry your are going through this rough patch just now.:hug: :hug: I think it is familiar ground to most of us and inevitably so, sadly.
     
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  19. CantThink

    CantThink Senior Member

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    Argh so frustrating. I completely get this as I have done similar - signed up for classes and in reality they are too much for me. In my case I'm a bit silly and end up going because of the money and then making myself sicker!:rolleyes: D'oh. I then banned myself from signing up for more.;)

    My issue was - mornings are terrible and a write off, evenings are not great either as I'd usually be back in bed by 4 or 5 p.m., so that leaves afternoons... But then most of the classes I wanted to do were never in the afternoon!

    Being realistic, if I can't even get myself outside and into my studio at the same time every week, what hope is there for a class? :eek: so....

    I did two online courses. I did one with the University of Oxford Continuing Education and one with the Open University. While I didn't get face to face social contact, there was (similar to this forum) online discussion/chat and the courses were interesting. I was able to do the work/study mainly within in my better moments, as I could just log in rather than having to physically go somewhere. This worked better for me.
     
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  20. sorin

    sorin Senior Member

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    Hi!
    I think I am just at the beginning of CFS (so relatively new to this since it started "just 5 years ago"), and I think I should not complain too much because I still can work a few hours per week, still can go to shopping and carry a bottle of water, still can wake up from bed and able to move my legs, I can still breath without having serious pain. However I feel that I make big efforts to be able to work the few hours and even to iron a shirt or clean the floor. I have read what a CFS patient wrote on a blog: "I am 28 years old but I feel wise as a 80 years old man. And this is due to CFS". So, yes, my life was completely changed and do not know how things will evolve. But I changed also my philosphy and my view about existence, humans, valuable things in life, etc. At some point in the past I thought I have to live only a couple of weeks, but then realized that I am not dead yet. Meanwhile my son was born and now he is 2 and half years old joyful boy . Sometimes when I sleep and dream I feel so good. In the dream I am healthy, I can play tennis and do all things that earlier I could do. When I woke up tired and having pains and sometimes being difficult to get down from bed, I felt "what a pitty that I had to wake up. It was better in the dream"... However, we need hope... All the best.
     
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