Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
Discuss the article on the Forums.

Really at a low ebb

Discussion in 'General ME/CFS Discussion' started by cosmo, Oct 8, 2014.

  1. cosmo

    cosmo

    Messages:
    64
    Likes:
    39
    Hi all.

    I have to say I come here not with good news or anything positive really. Sorry.

    I feel like giving up, I really, really do. I just can't seem to take this kind of life anymore.

    My pain level is so high at the minute there doesn't seem to be a part of me that isn't killing me. I'm so fatigued I can't bear it, I cannot do anything I want or what I used to love to do.

    I'm also very down and depressed and feel so alone. I don't have any friends and just can't see a way through if I am honest and feel like just giving up now. I just have become someone I don't want to be anymore.

    Sorry for complaining, I just don't know what to do and needed to say it (in a way). Nobody has to reply.
     
    maryb, golden, merylg and 5 others like this.
  2. ahmo

    ahmo Senior Member

    Messages:
    4,319
    Likes:
    6,431
    Northcoast NSW, Australia
    Hi @cosmo. I'm sorry you're feeling so bad. Is there something you can do for the pain? Like a bath? Can you create some physical comfort? Something that you've done or taken in the past to lessen your pain? To help you rest or sleep?

    I know what you mean about becoming someone you don't want to be anymore. But you might find that you can become someone else that you don't mind being. I've had to rearrange my mental furniture over and over to find an arrangement that works for me in my new identity as someone with a chronic illness. But I also know that I've had to shift my biochemistry to overcome deep despair.

    Do you have some pieces of enjoyment? music? reading? viewing? games? My new infotainment is online learning. I've been amazed how happy it makes me.

    Maybe this blog will offer you something. Mrs. Smith is looking into the depths and feelings that accompany being isolated and unwell. And the 2nd link is something I came across when I was looking for help to shift my mental state. Please give yourself a hug for having the guts to write this post.:hug: ahmo

    http://visitingmrssmith.com/

    http://www.WiseBrain.org
     
    Last edited: Oct 8, 2014
    maryb, WillowJ, rosie26 and 3 others like this.
  3. somatoform

    somatoform

    Messages:
    14
    Likes:
    16
    I am so sorry to hear that you are feeling this way Cosmo. You are not alone and there are others that feel like you today. You are not complaining, you have been seriously let down. I also feel very let down today, sometimes there is little hope. You have to be very kind to yourself, yes a warm bath or if you are not up to it a couple of hot water bottles, something that is comforting like a silk scarf or a scent, something funny on the TV? Look at the stunningly beautiful colours of autumn out of your window (uk)...Please do not give up, there are people thinking about you X
     
    maryb, Tammy, rosie26 and 3 others like this.
  4. cosmo

    cosmo

    Messages:
    64
    Likes:
    39
    Thank you for the replies.

    I have had hot water bottles but it's not doing anything. I can't manage a bath or a shower today in all honesty even though I think I may feel a little better, I'll have to see if I can a bit later.

    I try to see the beauty, however today they seem to make me cry as they seem like a taunt in a way.
    I don't know, I maybe would like to help with an animal charity, however I cannot guarantee when I will feel able to help or even what help I could offer and most places want a commitment of certain days or hours and I cannot provide that.

    I think the fact I was so active hurts me most of all and what I could do with myself and now I can't have that. Also because I look young and healthy I feel worse, like people don't believe me or I shouldn't struggle with things as I am young.

    I don't know, these last few days have been a bit of a struggle really.
     
    maryb and rosie26 like this.
  5. justy

    justy Senior Member

    Messages:
    5,132
    Likes:
    11,074
    U.K
    Hi Cosmo, I understand exactly how you feel. I have days, weeks occasionally months like this, but it always passes for me eventually. I am so sorry you are having to go through this also.

    I recently posted about a TED talk I saw that inspired me to start playing the online game Superbetter.

    http://forums.phoenixrising.me/index.php?threads/superbetter-anyone.32979/#post-509784

    They have a scenario for chronic pain - I am currently doing the anxiety one, but will try the chronic pain one after.

    I also find TED talks very inspiring, especially this one by 17 year old Progeria sufferer Sam - who sadly passed away shortly after this video was shot.



    If you have Netflix it has some amazing videos called 'Forests' 'oceans' etc that are extremely beautiful and relaxing with just images and music.

    Not trying to offer a quick fix - I know there isn't one - but offering some small suggestions that may help with supporting your mood right now. And don't forget the people of PR are here for you.

    Gentle hugs
    Justy x
     
    maryb, rosie26, WillowJ and 3 others like this.
  6. Quilp

    Quilp Senior Member

    Messages:
    203
    Likes:
    395
    I know that place, and I tell you now there were times when I believed that suicide was the only way out. But that time passed, and though it may come again, that time will pass too.

    I talked to my wife, I talked to myself, I talked to a stranger - but I talked, and the more I talked the stronger I became.

    I keep a diary, because I never want to forget how strong I was when I was weak; how hopeful I was when I desperate; how loved I was when I was alone.

    I find such pleasures as I could never have believed, in places that mean so little to others. A coffee, a favourite biscuit, the sun on my face, a picture of my daughter.
    Even treating myself to a few minutes on here when I know I shouldn't. If I can, I listen to audio clips on Youtube. I love listening to J.B Priestley plays. Oh and fish and chips on a Friday, what pleasures are they. Would they allow me a piece of chocolate too ?
    And in my darkest hours I go back, way back to when I laughed so much I cried, when I ran until my belly ached, when I lived and loved like it would never end. It happened and no-one, not even this illness, can take that away from you.

    I cannot promise anyone that I will never end my life. I really don't know what will happen if I find myself in that place again, and I cannot get out, but let us not forget that now more than ever, we have some of the world's greatest scientists trying to help us. There is a new Sheriff in town, and this illness is no match for him.

    I admire you for talking about this on Phoenix Rising. It is my belief that in doing so you are helping others in ways you might not be aware of right now.
    There are many reasons to go on, and if there were any doubt, you have given us one more.

    Mark
     
    maryb, greebo, Tammy and 10 others like this.
  7. caledonia

    caledonia

    Messages:
    4,203
    Likes:
    3,212
    Cincinnati, OH, USA
    Hi Cosmo, I'm sorry you're not feeling well. There are a couple of things that help me when I'm feeling awful. One is realizing that it's only temporary. Your pain is not always at a high level, so eventually it will come down.

    The other one is to distract myself with some sort of entertainment - movies or tv usually work for me. Something more on the calm side is usually best. Audiobooks or nice quiet music can also work.

    Prayer can be helpful if you're inclined in that direction. I don't pray for anything in particular, I just sort of recite rote prayers over and over and it gives me something else to concentrate on besides how bad I'm feeling. This is usually when I'm curled up in a fetal position in bed dying.

    I've also found that the end of my nose doesn't have pain, so sometimes it helps to just focus on the end of my nose. Or if you know how to meditate, then focus on your breath.

    This is really interesting. I've learned a couple of energy therapies. One is called EFT which stands for emotional freedom technique. The other is called Healing Touch Therapy. The Healing Touch works the best for me for pain that lasts and lasts. You can have someone do it on you, or you can do it yourself.

    I've developed mental versions of both techniques, so if I'm laying in bed dying and can't move a muscle, I just imagine myself doing the technique, and it still works.

    There isn't much on Healing Touch online, so if you want to know more, let me know.
     
    maryb, rosie26, justy and 1 other person like this.
  8. cosmo

    cosmo

    Messages:
    64
    Likes:
    39
    Thank you all for your responses, they mean a lot. Thank you.

    I think it's hit me that my pain is going to be really very bad now until may next year as the change in weather just makes my pain levels shoot through the roof.

    The superbetter looks interesting, I think I will give it an in depth look tomorrow. It's good they have them for so many things too. My anxiety is pretty bad, but it seems the pain is worse now, especially!

    I will watch the video when I feel in a better frame of mind, at the minute anything is setting me off.

    Thank you for everything. x
     
    maryb, rosie26, justy and 1 other person like this.
  9. cosmo

    cosmo

    Messages:
    64
    Likes:
    39
    Thank you for your reply and your honesty about what you too have been through.

    To be honest I was thinking hard about it this morning but I don't think I could see it through and then I looked at other options like in Switzerland, but it made me too upset and the thought made me sick. Sometimes it just feels like it's too much to continue like this. I'm in my twenties but can move less then my 75 year old grandmother.

    I always try to take the joy in little things like my beautiful plant just outside the window, still in beautiful pink blooms it looks fake or my lovely dog. I look back and I am proud of what I have achieved before this happened, but it's like it's another person who I once knew.

    I really hope you are right and something can change to help us all, wouldn't that be just amazing.

    Thank you for your kind words, I don't think I am admirable, more just completely lost.
     
    maryb likes this.
  10. cosmo

    cosmo

    Messages:
    64
    Likes:
    39
    Thank you for your ideas. I haven't heard about healing touch at all, is it similar to reiki?

    Thank you, I'm not one for prayer as I'm not a believer personally. I try to do positive things out in the world and help as many people or animals as I can and that's what I try to focus myself on.

    I think I need to change things up maybe, try different things and focus on different things. I thought maybe I might see about going away somewhere next year as I haven't been abroad in a number of years, maybe it will give me something to plan and to have out there to look forward to, especially when things are bleak. I don't know.
     
    justy likes this.
  11. ahmo

    ahmo Senior Member

    Messages:
    4,319
    Likes:
    6,431
    Northcoast NSW, Australia
    [​IMG]Good morning from Australia. Glad to see you've gotten so many responses. I really agree with Mark,
    Good games of all degrees of simplicity at jayisgames.com.:hug::angel::balloons::thumbsup:
     
    maryb and rosie26 like this.
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    13,980
    Likes:
    21,293
    Albuquerque
    @cosmo
    I'm so sorry you are going through this period. As others have mentioned, things usually change but while in the midst of it, it is hard to find optimism.

    I don't know what type of pain you have and this suggestion may not be suitable at all, but I just want to check that you are aware that LDN is very helpful for pain...for some. It is inexpensive if you use the generic. The "run-in" period while you get up to dose can be a bit bumpy for many. It is one of my "mainstay" treatments.

    Best wishes and hugs,
    Sushi
     
    ahmo likes this.
  13. ahmo

    ahmo Senior Member

    Messages:
    4,319
    Likes:
    6,431
    Northcoast NSW, Australia
  14. somatoform

    somatoform

    Messages:
    14
    Likes:
    16
    Yes I agree, it is terrible that you are so young and in such pain. LDN may help but you should get yourself seen. How are your magnesium, B12 and vit D levels, have they been checked, also inflammation markers. Take care and wishing you a restful night, tomorrow is a new day. (sorry I am new to this forum and cannot quite work out out we reply with quotes)
     
    Last edited: Oct 8, 2014
  15. ahmo

    ahmo Senior Member

    Messages:
    4,319
    Likes:
    6,431
    Northcoast NSW, Australia
    @somatoform thanks for being so practical;)

    re quotes, If you select the info you want to quote, then click on quotes symbol in header of your response window, it will do the job. Your post looks correct, but the words 'quote' are in lower case, rather than upper, as they should appear.
     
    somatoform likes this.
  16. somatoform

    somatoform

    Messages:
    14
    Likes:
    16
    Morning Cosmo, how are you feeling today?
     
  17. cosmo

    cosmo

    Messages:
    64
    Likes:
    39
    Thank you all for your very kind responses. I'm a bit overwhelmed.

    Today I feel a bit better thank you. I've been depressed and low before and desperate, but it was that combined with the worst pain that just made me not want to carry on anymore.

    I'm really sorry but I have absolutely no idea what LDN is. I thought it meant London!!! Could I ask a Dr for this or do you get it yourself? Sorry for my ignorance!

    My B12 and vitD are fine, I have a positive ANA all the time and elevated ESR and CRP levels, but the Dr's dismiss them. Before my ESR and CRP were off the chart apparently, but it was left.
    I think this is why I feel low, it's the fact I am just left to get on with things. It's just so easy to feel so lost.
     
  18. JalapenoLuv

    JalapenoLuv

    Messages:
    299
    Likes:
    99
    unknown
    I think that CFS is a much worse disease than progeria. Although Sam Berns can't lift much weight he doesn't have: difficulty concentrating, chronic pain and crushing fatigue. So he is basically an adult in a kid's body. Kids are generally healthy so there's no comparison.

    I had cold skin, muscle pain and headaches in the past. Here is the regimen I used. Stacking drugs is alternating them so you don't overdose. My typical regimen was: ibuprofen (400 mg), 4 hrs later tylenol (500 mg), 4 hrs later ibuprofen, etc. I was allowed to take up to three doses of any drug per day. For the cold skin I would wear long sleeved clothes and take a hot bath daily.

    Having CFS forces you to acclimate to a new lifestyle, give up unobtainable goals, and make new ones. Instead of material and career goals I was forced to find other ways valuing my life. Before bed I would make a list of things I appreciated during the day. For example, people that were nice to me or helped me, something that turned out well when it didn't have to, completing exercise goals, being thankful for a caring relative or friend, etc. That way you surround yourself with a positive mental environment and it helps you cope.

    Treating depression is very important. When I was depressed I did CBT therapy and used SAM-e. I also found that keeping animal protein portions low (2oz) lessened the intensity of the depression.

    I had anxiety as well but since you don't mention having that there's no reason to get into it.

    It's natural for sick people to feel bad and not function as well as healthy ones. It is not an easy road to live with disabling CFS. I think if you work on your own situation you can improve your life and learn lessons from the experience. Otherwise it won't end well.
     
  19. ahmo

    ahmo Senior Member

    Messages:
    4,319
    Likes:
    6,431
    Northcoast NSW, Australia
    [​IMG][​IMG] LDN is low dose naltrexone. It's been found to be brilliant with autoimmune disorders. It's put many people with MS into long term remission, as well as many other amazing stories. I've been on it 3 months, my system seems a bit calmer. There's a very long thread here on pr. I'm linking 2 good sites for information. Some, like me, get it w/ rx from Dr., others get it w/o rx, through online sites. Inexpensive. The yahoo group has posted links to which of those providers have the best quality.

    Glad you're feeling better. You're right, most of us are just left to get on with things. That's what makes phoenixrising truly life saving.:angel::hug::balloons:

    http://www.lowdosenaltrexone.org/index.htm

    https://sites.google.com/site/dudleyslowdosenaltrexonesites/
     
    cosmo likes this.
  20. caledonia

    caledonia

    Messages:
    4,203
    Likes:
    3,212
    Cincinnati, OH, USA
    It looks like Healing Touch would be somewhere in the ballpark of reiki, except there are somewhat different hand positions. You don't actually touch the person, just hover above the various positions and inch or so. You start at the bottom of the feet and work your way up to the head. Reiki looks like it's mostly head and torso centered. I would guess Healing Touch is some kind of mishmash of reiki and some other stuff, or a westernized version of reiki or something.

    Note: I just found a page about reiki that says more or less the same thing - http://www.takingcharge.csh.umn.edu/explore-healing-practices/healing-touch
    Invented by a nurse in 1980, using a combination of various energy therapies + aboriginal + shamanic traditions.

    Since it was developed by a nurse, I've heard of it being offered by hospitals if they're into complementary medicine. The two people I know who practiced it on me were Catholic, so they justified using basically an Eastern practice by comparing it to Jesus' laying on of hands for healing. There is a group in my city who will practice on you for free if you can get yourself to where they do it.

    You don't have to have God involved in it, if that is not your thing. It can be any higher power, mother earth, nature, the universe, or just getting centered and having good intentions. My one friend suggested that I could use blues music, since that's something positive and healing that I'm into.

    So basically it can be adapted to anything that works for you philosophically. It seems like there is some kind of universal healing force that many groups have discovered and tapped into over the eons, and this is just the latest iteration. Not quite like "the force" in Star Wars - but there's definitely something there.

    ps. my one friend who did the Healing Touch on me - says she had fibromylagia bad enough she was having difficulty with her cleaning job. She does it on herself daily and and as long as she does that, she is free from pain and has no problem with her job.

    pps. traveling sounds like a great idea if it's something you can do. You have all the time spent planning and imagining the trip, then the actual trip, then something you can look back on later.
     
    cosmo and ahmo like this.

See more popular forum discussions.

Share This Page