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How to deal with being ill mentally.

Discussion in 'General ME/CFS Discussion' started by Uk125250, Mar 27, 2017.

  1. Uk125250


    Cold Spring, KY
    Hi, yesterday being unable to do anything(bedbound) really got to me. I've been to so many drs, been through test after test. I have been getting worse and worse with no hope given to me for improvement. The reality of it all has become overwhelming. Others in similar situations, has this happened to you? I think I've coped with it fairly well up to this point. Definitely my lowest point ever, right now. Thanks!
    merylg, A.B., Lolo and 9 others like this.
  2. lnester7

    lnester7 Seven

    Sorry to hear you don't feel well.

    Take one moment at the time ( One day at the time) I had to make it one minute at the time at my worst becuSe I dint think I could make it another minute, when I was burning in brain and pins and meddles the feeling was overwhelming.

    I try not to give in to emotional thoughts and say I am busy healing and focus on that. If I start thinking what I am loosing/ lost then I would go crazy and crash even more.

    For me planning and strategizing gave me a sense of control. I know doesn't work for everybody but think about what as a person gives you sense of control and try that.

    Sample I would say ok there are this treatment or that thing I can try and once I had a plan to move forward I would feel better. Good luck and you are very busy regenerating energy!!!!!!
    merylg, Jennifer J, AndyPR and 6 others like this.
  3. belize44

    belize44 Senior Member

    I think that Inester7 made a good point! I am just coming out of a really bad crash, and am feeling a bit more alert and cheerful than I have for over ten days. What helped me was to keep saying to myself that nothing ever stays exactly the same, even bad things. When you are bed bound is the worst, IMO. It is hard to stay positive when you are not able to rise and be about, so maybe think of it as conserving energy for another time, as Inester7 said. When I am having a bad spell, I try to have my blinds up so that I can see the sky and watch birds. My cat always likes to snuggle close and that is a comfort. I hope you can gain a more even outlook, and we are here for you!
    merylg, AndyPR, Kati and 3 others like this.
  4. Uk125250


    Cold Spring, KY
    Thank you both!
  5. Diwi9

    Diwi9 Senior Member

    @Uk125250 - I want you to get better, I want you to feel better. We are all in this together. There is hope. It is difficult to wait for answers, so difficult, but I know help is coming for all of us. Hang in there and know you are part of a team and this team of ours is going to win. Big cyber hug to you.
    dangermouse, belize44, merylg and 3 others like this.
  6. the_phscale


    Southern California
    I definitely echo what the others have said. Be patient, be kind to yourself, hang out with pets. There's a book that I found pretty helpful called "How to be Sick" by Toni Bernhard- it's a guide on mindfulness and treating yourself well when experiencing chronic illness. I strongly recommend it, you can even read a few chapters on google books to decide if its right for you.

    I've also been experimenting with becoming more creative. So much of our external lives are limited, so I've been spending time cultivating an internal life. By that I mean learning languages that I never got the chance to, or writing poetry. This will depend on your energy and how much mobility you have in your hands, but I've taken up crochet. It doesn't require much concentration or money, it can easily be done in bed and in doctor's offices, and you can see tangible results of your hard work! Sometimes when it feels like we have to work so hard just to stay in one place health-wise, it can be very rewarding to make something with one's hands and see the product of that creativity. I crochet small squares, which are very simple and hard to mess up, and then I donate the completed ones to animal shelters to use as blankets. It really does make me feel productive and valuable, as small a task as it may seem!
    belize44, Jennifer J and AndyPR like this.
  7. mhrps


    Why do you think you are mentally ill? I also am bed bound 90% but I don't have any psychotic symptoms, excessive guilt so, having said that I assume that am not mental.

    Anyway, that situation is not comfortable whatever you call it. I was in my lowest point 10 years ago and I am still here, trying different medications, pacing methods, diets or motivation factors.
  8. Kati

    Kati Patient in training

    Hi @Uk125250 I am sorry your health is declining. Know you are not alone. So many of us living through it, all over the world.

    There is hope to be had with research. Do not lose sight of the big strides that are being made right now, for all of us. There are many teams out there who work day and somtimes nights and week ends, to figure it out.

    What is needed is a strategy to live 'in the meantime'. If you are bedridden or mostly bedridden, what is it you can do to soothe your soul? Do it! It could be listening to music you love, just for a little while. It could be learning how to draw. Or reading, or writng, if at all possible. It could be allowing yourself to dream and let your spirit wander. I remember a patient who took lovely pictures from her bed, using ling exposures. Be creative. If you are able to sit up for little bits of time, what can you do while sitting? What distraction or passion can you take on?

    How can you be more connected in the world and feel less lonely? (Hint, this forum can be good for the soul but it is only one way)

    These are just a few strategies I use. Distraction is very important, for the meantime.
  9. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

    I think you might have misunderstood what he meant. It's not that he's mentally ill; I think he's wondering how to deal with the stressful emotional aspects of being ill and how that weighs on him mentally, for instance he's feeling down because he's bedridden.

    When I saw the title of the topic I had the same interpretation you did until I read his post. Maybe it would be clearer if he had written "How to deal with the mental aspects of being ill." @Uk125250, I hope I interpreted that correctly.

    As far as how I deal with it, I try to distract myself as much as possible. For instance, I love my Kindle and the library delivers books to me. At one point I listened to relaxing music using headphones.

    @Uk125250, are there any activities you can do in bed that would take your mind off your problems? Have you seen coloring books for grown-ups?
    Jennifer J, AndyPR and mhrps like this.
  10. Jennifer J

    Jennifer J Senior Member

    Southern California
    Sorry, it's hard. Some days (and weeks) are like that. Sometimes I have to do moment by moment. It's strange how sometimes one day it will get to me and the next day I will feel lighter.

    The other posters posted a lot of really good ideas. I'm not sure what your abilities are. I know I can't do any crafts or spend energy on learning new things. It crashes me worst and I don't have the energy to spare for it. I'm mostly bed bound 23 hours or more a day and crash even harder from minimal exertions so mine is saved for necessaries, if I can I do something to try to change things, and when I can a little social on here, email or the phone.

    I find looking at things on the internet helpful. I can't read too much. I like looking at pictures on instagram accounts of artists, art, places I'd like to travel to and more. This lifts my spirits and inspires me. Also, if I feel well enough I'll listen to some music on youtube. And, PR has been a life saver.

    I've only recently started looking at accounts of interest on twitter. It's perfect for those times my brain can't take in much and I don't crash from reading a lot. It also helps me feel less alone, and several things I've seen or read have made me laugh.

    I'm not sure if this might work for you. The braille library will send you a machine and books of your choosing you can listen to: http://www.brailleinstitute.org/about-the-library.html or call them for more information 1(800) 808-2555 or (323) 660-3880, Monday - Friday 8:30 a.m. - 5 p.m. (PST).

    You don't have to be blind, the service is for home bound people, too. It's free and a great service. They'll mail you the digital books or you can download them. They also have services where people can talk to you or read to you on the phone or ?internet. I haven't tried those yet so I'm not sure how it works.

    Getting lost in series (binge watching) has been good too, movies or watching something good on TV. Not sure if someone can put you on their Netflix account or if you have one. Some things are available on the internet on Youtube and other places. The library you can check out DVDs for free. Here it's for a week and can be renewed up to 3 weeks. Maybe someone can pick you up some or they can deliver it to you.

    I hope you find some things to make it better for you. There is a lot of hope in the air with the research that is being done. It's a very promising time for us. Don't forget we are here for you. :hug:
    the_phscale, belize44 and Diwi9 like this.

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