Have you ever just had enough?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by VoidSoul, Jun 27, 2013.

  1. VoidSoul

    VoidSoul Member

    I think I have. 13 years is enough of this illness. I'm so tired of being the burden in peoples lives, of everyday being the same & of being incapable of looking after myself properly. I don't know how to keep going anymore.
  2. gb66

    gb66 Active Member

    I feel this way a lot lately. I've had CFS/ME and FM for over 35 years. Plus, I have developed a bunch of other things in the last few years. It's really hard to keep going, physically and emotionally, when more stuff keeps going wrong. I haven't given up hope for a cure though. It's not over yet, I'm still here.
  3. Realette

    Realette Member

    I really relate too. It has been at least 25 yrs with slow progression to worse. It is truly a challenge, but I feel I can grow spiritually. I am tired of the "normal" crowd and feeling marginalized. This is my normal. I'm trying to find groups that can relate in the community and stand up for myself without getting too angry.
  4. IanH

    IanH Active Member

    VoidSoul
    It took me about 13 years to make any real gains with this illness but over the last 4 years I have made some great strides, getting back to part time work. This illness destroyed my career and whats more I believe I somehow "infected" my wife and daughter with it. They have had it for 7 years now. However I had to re-think my life and my feelings of burden because I know my family all love me and do not in any way find me a burden and never did. It has been very costly because I could no longer do the "man about the house" things and this put extra work on my wife. We have both adjusted, which is what we all have to do with this illness - as Realette puts it "This is my normal" I feel happy now, even though I see no cure on the horizon.
  5. Mikie

    Mikie Moderator

    I am so sorry for the toll these illnesses take on all of us. It's hard to have hope when we are sick day after day after day. Like Ian, I've been sick for 13 years (longer than that but really sick the last 13). I came here and tried things I learned about from our members. I did relentless online research on our conditions. I found a sports medicine doc who decided to specialize in our illnesses. He helped me a lot and was willing to try new things if they weren't risky. I started getting better with Rx's and supplements. I got physical therapy with easy stretches I could even do in bed because I was bedridden most off the time, and on morphine, in the beginning.

    I just completed a year of peptide injections, a treatment which has been used in Europe for decades. This treatment originated at Oxford University and their research facility. It's FDA approved but ins. doesn't cover it. The symptoms of my arthritis, CFIDS/ME, FMS and Sjogren's Syndrome are gone. I don't use the word, cure, because I don't know whether this is a cure. The very first night of the first shot, the arthritis pain, inflammation and swelling were gone. My dry eyes and mouth from the Sjogren's started to pour out tears and saliva. Some months, I didn't seem to see dramatic improvements from the shots, but now, I'm almost normal. I don't know what normal would have been for me because I lost 13 years more or less; I'm 13 years older than when I got sick.

    Have you been able to try things and do you have a good doc? These things can really help. Finally, I found grief therapy very helpful. When we get sick, we "lose" ourselves and our old lives. We grieve for that and need help to try to find acceptance. Acceptance doesn't mean we have given up; it just means we don't get stuck in hopelessness, anger or denial.

    Sending up a prayer for you and all who are so sick and tired of being sick and tired.

    Love, Mikie
  6. Granniluvsu

    Granniluvsu Member

    Voldsoul and all,

    I do understand as I have had this mess for over 30, before it had any name. Yes, it is NOT fun at all and peeps wonder how sick you can be sometimes when you look so good. Especially if you are out and about and not lying in bed.

    I guess I an lucky in some ways it is mostly FM, CMFS and OA in neck and head, especially. Not so much the CFS but I do feel I have no NRG and have to push myself to do anything, esp housework. Luckily I enjoy singing and do get out and about to do so in a couple of groups. That is my therapy. I think the frustration of dealing with constant pain though wears me down but those of you who can't get out I'm sure get really frustrated. I try and keep a good attitude and this forum (PH boards) helps me a lot. Lots of understanding and smart people around here :)!!!

    If any of you are homebound or not if you have some hobby you can do to help keep up a good attitude, do it even if it is small and you don't get to do it all the time. I know how hard it is and only those of us with similar medical problems and disabilities understand what we all go through every day. Even my DH doesn't really understand even if he says he does.

    Yes Mikie, I am sick and tired of being sick and tired but then I see others are even worse off than I .

    Love and Hugz to you all,
    Granni
  7. Granniluvsu

    Granniluvsu Member

    P.S - Gb66, et al- yes I guess we are still here so that is a good thing. Now besides the pain I have with the FM and CMFS, I now have OA, osteoporosis, hypothyroidism, hi b/p, etc. Yes, sometimes I do feel like I am falling apart little by little.

    Yes, I'm sure if we all made a list of our syndromes, diseases, symptoms, etc. it would be VERY long. Yes, I know sometimes it is very frustrating and I just want to SCREAM :eek:!! No one really understands how we feel other than those of us who have similar diseases and or symptoms . That is why venting and chatting, and exchanging information with those who truly understand on this board is so priceless to me..

    Love to you and all,
    Granni
  8. jaminhealth

    jaminhealth Well-Known Member

    I "thnk" I'm feeling a tad of a shift with Krill Oil and the painful OA joints from neck to feet/ankles...It's a bit over a week on Krill Oil and we'll see.....

    I have taken the "original" fish oils for years off and on and really never noticed any shift.....

    But, now my joints are all Worse in the last 2+ yrs so MAYBE Krill is helping....

    Everything we try is all hit and miss, and sometimes we make a hit....so I continue on the Krill.
  9. LBwilliam

    LBwilliam Member

    my mums in the same place its very difficult to watch her....generally! Has anybody heard about the Buteyko breathing method? I was sent this link about http://learnbuteyko.co.uk/buteyko-for-chronic-fatigue/ im trying to get my mum to look into it as for me it seems pretty legit! she's tried a lot of different treatments and is very distrustful, i dont blame her but it would be good for me if i could have you guys imput! any comments or suggestions would be appreciated - many thanks LB
  10. gb66

    gb66 Active Member

    I just had more bloodwork done and now have added low vitamin D. Have to take 10,000 mg. of it for 10 days. Mine was 15 and it's supposed to be between 30 and 80. My white and red blood counts are high too. Also problem with microalbumin level @39, should be 30 or below and tested positive for a tick borne infection called Ehrlichia Chaffeensis that probably came from a tick bite 35 years ago when all of this started. I guess CFS/FM has a cause in some cases. Maybe I'll get to the bottom of why I'm so ill for so long. GB66
  11. Mikie

    Mikie Moderator

    Granni, you are right. As bad as my conditions have been, I don't have to go far to see people with even worse, and more painful, illnesses or injuries. So, I have found that trying to live with an attitude of gratitude for the blessings I do have has made all the difference in the world. It shifts my focus from what I don't have to what I do. Despite all my illness, I have lived a very blessed life. This is what I mean by getting to the acceptance stage. If we can get there, we can change ourselves. I have changed what I can, including myself, and left what I cannot change in God's hands. I'm no Pollyanna; I know the pain and fatigue which goes with our illnesses and that's why I pray for us all.

    I see my neighbors who have aged over the last 16 years I've lived here. Most are my age or older. All of them have had to contend with more and more challenges as they age. One of my best friends here was caring for her husband as he was fighting cancer for about five years. She developed a blood clot and almost lost her leg. The clot moved before the docs could treat it and it stopped in her eye, making her blind in that eye. Her husband died two years ago. They really loved each other and were each other's best friend. Both of them handled their illnesses and treatment with grace and determination. They have set such a good example for the rest of us here. Another good friend lost the sight in one eye with wet macro degeneration. She has to have shots in her other eye every month for the rest of her life to keep from going completely blind. Again, she has handled things like a champ. I wouldn't trade places with either of them.

    As always, my love, hugs and prayers go out to everyone.

    Love, Mikie
  12. IanH

    IanH Active Member

    gb66 Just to correct the record, you said: Have to take 10,000 mg. of it for 10 days
    I think you meant 10,000IU (which is 250micrograms) for 10 days.
    After that I would recommend you continue with 5000IU daily. Otherwise your levels will fall again.
    It will be interesting to see what your levels rise to after the 10 days. I would predict that it will be between 28 and 35 ng/ml. because you have an infection and possibly ME/CFS.
  13. mbofov

    mbofov Member

    I know exactly how you feel. I've been dealing with CFS for over 15 years and it severely limits my life because I crash when I do more than a couple of hours of light activity a day. However - I have made some progress, primarily in the last couple of years. largely due to supplementing with folate (not folic acid, which is synthetic) in addition to B12 which I've been taking forever, and also extra potassium.

    Also, for many years detoxing was a huge issue for me. So many things that were supposed to help I couldn't tolerate due to a detox reaction. And now, my detoxing is way less than what it used to be . I don't know what caused the change, but it is making it possible for me to finally do a mercury detox that I had a great deal of trouble tolerating before. I think taking acetyl-l-glutathione helped. I just don't know. It is my hope that the mercury detox will help with the crashing, as nothing else has stopped it. I recover quicker from crashes than I used to, but I still crash just as easily.

    There have been plenty of times when I just want to give up, and so will feel that way for a couple of days. And then some part of me just won't, give up, and as Mikie said, I keep researching. You cannot just rely on your doctors. I've made myself a human guinea pig because I want my life back.

    So it's okay to be discouraged for awhile, and then starting reading about what has helped other people. One lady had been given a label of all sorts of autoimmune illnesses and was taking horrible drugs for several years, when it turns she was gluten or wheat intolerant (I forget which). Somebody else got rid of horrible fatigue by cutting out wheat. So you never know - you have to try everything. I was having chronic sinus infections (on top of the carshing) for several years - it was horrible, and then I discovered Moducare and it really really works - I don't get those debilitating infections any more. And I had tried everything else in the book.

    Someone else was sick for 25 years or so and finally got diagnosed with lyme. So you've got to explore all avenues and educate yourself as much as possible. I've been helped several times by a chiropractor who does muscle testing. He discovered and helped me with weak adrenals which no doctor ever did. This made a huge difference. We have to think outside the box. If regular medicine had the answers, we wouldn't be sick for 10 or 15 or 20 or 30 years.

    Hang in there - take care -

    Mary
  14. Mikie

    Mikie Moderator

    Yes, it is OK, and normal, to get discouraged sometimes. I've been in pain with this shoulder 12 weeks and today, out of the blue, I got so angry and swore. As much as I talk about acceptance, I can slip back into anger or depression when I've just had enough. Venting is good and everyone here knows what we all go through with these diseases. It's so comforting to have others who understand.

    Love, Mikie