The unfairness of living with ME/CFS

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by MicheleK, Feb 7, 2013.

  1. MicheleK

    MicheleK Moderator

    It has been a tremendously rough few months for me health wise. I have improved enough to be back online and I am happy.

    A good number of my family members came down with the flu or really bad viruses. I caught two of the viruses this past month just as I was getting mobile again after a 3 month bed confinement from my ME/CFS.

    My family members, including my husband were very, very ill for a week. I was happy to see them recover and get back out and about in their lives.

    However yesterday as I laid here still reeling from the viruses they gave me which though over left my immune system in an over active state, pouring out all those cytokines that make us feel like a piece of lettuce put in a microwave, I started feel angry.

    The anger is that seemingly everyone I know who gets sick, ends up getting well and I am left with this stupid ME/CFS which doesn't allow me to "get well" and get on about my life.

    Seriously, my sister had inflammatory breast cancer and it was horrible what she went through but she beat it and has lived a full 7 years now cancer free, one breast lost and I am sure an emotional toll, but she lives a full life.

    My mother has gone through a few surgeries for her heart which were scary and serious, but she too came out of it a winner and lives a full life.

    Everyone who gave me those recent viruses is back out in their life, laughing, living, enjoying the company of others. I am left here neutralized. It is so unfair! I get sick of how unfair this illness is. Sometimes I wonder why I couldn't have gotten a different illness. One that would have allowed me to recover and go out and about, back among all those I love and with the ability to do the things I love to do.

    Don't get me wrong, I view getting cancer as my sister did as a very serious and trialsome experience. I just want a piece of the "getting well pie". I love pie. Why can't I get a piece of that pie?????

    I'm sure many of you here on the boards have felt this way. Perhaps some of you are feeling it right now.

    It sounds somewhat like a little child complaining but yesterday I felt it quite deeply. I told my husband I was very happy to see him back to feeling good as he really did have a awful week. And I am happy for him and for all my loved ones. I just want to be in their club. I just want to be well again.
  2. sunflowergirl

    sunflowergirl Active Member

    I've been sick on and off since Dec l9. Twice to see a doctor, couldn't get rid of the bad coughing and drug out feeling. One doctor wanted to put me on steroid inhaler. And this afternoon I'm running a fever again which means I'm still dragging this bug around in me.

    Everyone I know who got this bad bug "suffered" for about 2 weeks, possibly a tad longer but they all seem to bounce back. And I had to listen to them whimper and whine but not one word of sympathy from them when I was at my worst. Not fair, not fair, not fair.

    The problem with us a defective immune system. And once something has hit our immunity is low so along comes the next bug.[This Message was Edited on 02/07/2013]
  3. IanH

    IanH Active Member

    Michele,

    You strike me as person dedicated to helping others, Which you do so very well on this forum.

    May I ask, What do you do for you? In your illness and helping others have you lost site of yourself a bit? What about your art?

    I was similar with my music, I am a guitarist. For years I could not play. Then I made my purpose for getting well re-playing my guitar and listening to music to help me improve my guitar.

    It is only when I had improved my illness that I came on this (and other) forums.

    Why I ask is that my daughter is a bit similar to you and it is only when she got back to her art that she began to improve significantly. The diet, supplements etc helped her but only to a degree. Now she is improving a lot. I have just designed a web-site for her. I have just put up a few of her paintings to start with but have a look at some of her earlier work:

    www.tashas-art.com
  4. Mikie

    Mikie Moderator

    We grive losing our health just as we grieve when someone dies. We have lost our former selves/lives and now grieve for them. We go through the steps of grieving and anger is one of them. We may get through one of the steps only to revisit it when things get worse.

    There is no such thing as fairness even though it feels unfair that we are sick. We cannot compare our lives and our health with others'. It will only lead to anger and resentment. Each of us is on our own path in this life and some of us have it harder than others. I believe we are here to grow in spirit and how we deal with difficulties is how we grow. It isn't easy but it's better to concentrate on our own growth than to compare our lives with others'. I know, I know--easier said than done.

    If one gets stuck in anger, I believe therapy can be of great help. Longterm anger can cause us to become sicker. If we can get to acceptance, it frees us up to find ways to heal. Acceptance doesn't mean giving up nor giving in. It just means we accept that we are sick and we do our utmost to get on with living and healing.

    BTW, our friends and family are not immune to denial and anger when we get sick and they may get stuck in these steps. If so, therapy may help everyone.

    Good luck with dealing with this. We all empathize with what you are going through. My prayers are with you.

    Love, Mikie
  5. sunflowergirl

    sunflowergirl Active Member

    I've worked in oils, watercolor and pastel and I know a good artist when I see one. You have to be very proud of her. Watercolor is a hard medium and she's really mastered it. I'm happy that she's gotten to the point with her health that she can concentrate on her art.
  6. LadyCarol

    LadyCarol Member

    Michele, "Why can't I get a piece of that pie?????"

    Indeed, why can't you, I wish I had an easy answer for you.
    However, I do know what you are going through, I have ME/CFS and I have a form of terminal cancer (leukaemia) that has no cure.

    I struggle through each day as it comes often hoping it will be my last but obviously God has other plans for me. Just when I begin to have any sign of improvement something comes along and knocks me down just as it does with you. Life isn't fair, well not life in this world anyway.

    The only thing that keeps me looking forward to the day when I will be cured once and for all time is when I will at last meet my Lord and Saviour when I will be transformed in a moment, then I will be fit, healthy & happy for ever and ever. Until them I struggle to endure what seems to be an endless amount of suffering, and do whatever I can to help others when I am able.
  7. MicheleK

    MicheleK Moderator


    Ian, thank you for sharing your experience and that of your daughter's in getting back to your art.

    I went to your daughter's website and was WOWED! Wow, Wow, Wow! She has great talent. Wow! I love all of her paintings, but especially that frog and the close up of the herd of sheep. Wow! Did she ever do any painting from bed? I can sketch in bed that's about it.

    I am mostly flat on my back with a computer table over me. So everything I do, I do from here. I do designing online for myself. I find it releases the creative side in me.

    I have a stained glass studio in my house but have not been able to return to that yet. I also use to paint but I don't feel inspired to do that due to the fumes and the time it takes to clean up.

    All of my life my joy has come from interacting with other people. When people would ask me what my hobbies were I would say "people". It fills something inside of me that I can't describe. I find nothing as interesting as I do people.

    I do however take time for myself. You cannot give in a healthy way when you do not nurture yourself.

    I do get a day here or there in a month where I can do something but I now have an 18 month old grandson, so when I feel decent he is where I want to spend my time. He lights up something inside of me that is indescribable. He is also a big energy drain, but what am I suppose to do, not see him and be a part of his life? No can do!

    I had two days of feeling the unfairness and a lot of that was watching others walking about where ever they wanted and me not being able to see my grandson.

    I had reactivated HHV6 titers at 2500 beginning in October. I just got my results back after 3 months on Valtrex and they are now at 1100. I also have reactivate EBV in the stratosphere as Dr. Lerner put it. I don't remember the number. I have been quite ill and am just now thinking I could see him with a mask on. He may have already been exposed to HHV6 by someone else, but I did not want to be the one to expose him. So it made me upset and I shared it here thinking others might relate to the feelings and share their own.

    I'm out of that now. Back to acceptance and hope. Living for the day I will be with my little Max and all his chubby cuteness.

    Feelings with this illness are as the waves of the sea.
  8. MicheleK

    MicheleK Moderator

    Ian, I overlooked the tab on your daughters web page that was for landscapes. Again, WOW! The detail in those cars and cityscape are amazing.

    Does she have any interest in selling her paintings or making some into note cards that patients could by off of her?

    If so we have a group of patients who sell things online. Here is the link:

    https://www.facebook.com/groups/mecfsfmpatientcommerce/

  9. ... yes, indeed... I couldn't agree more...

    I haven't been online since Saturday or else I would have responded sooner... I've taken a turn for the worst so have had no choice but to lay here and do absolutely nothing... even was too weak to read... not doing much better, but didn't want anyone to worry...

    But I've def had my moments of anger and feeling fed up with it all... I, too, love people, Michele... I am never happier than when I am helping or encouraging others... it has always been a source of joy for me... so to have a disease that has eliminated my ability to do that (for the most part) , is hard to accept at times...

    But as you said, our feelings tend to "ebb and flow" with this disease... My walk with the Lord def helps me NOT stay in an angry state... He has helped me to see that my disease is not a punishement... but rather he has isolated me to show me more of Himself and to share some of His deeper Truths with me. I AM still human, though, so I still have my moments or days when my physical suffering and frailty gets to be too much... Like everyone on this board, I just want to be healthy again!

    I started learning the harp a couple years ago, which was a life-long dream of mine... but after a few months of lessons (and LOVING it), a close family member's death sent me into a bad flare, followed by another death 3 months later, among many other stresses and emotional drains. I haven't been able to play it since... I look at my harp in the corner of my bedroom, and wonder if I'll have the extra energy to play it again... it was such a blessing... but I just don't know... I don't even have the energy for the bare essentials of life... and at the moment, it DOES seem unfair...

    I had also hoped to help my mom by taking turns with her and babysitting my 14 month old nephew sometimes... I LOVE children SO much and ADORE my little nephew... but so far, that has been only wishful thinking on my part... and if I let myself think about it too long, it breaks my heart... So, I do understand the joy your grandchild must bring you, Michele... and how much you yearn to be with him...

    It IS hard to watch everyone around us living their lives, while we seem to be stuck in limbo... especially when we have to deal with physical suffering as well... At times like these, I have to try to switch my focus back to the Lord... and pour my heart out to Him... and wait for Him to lift my spirit once again... and He always does... whether through His Word, or through others, like all of you on this board...

    Our path is not an easy one... that's for sure...

    Glad your spirits are lifted once again, Michele...

    Blessings and Gentle Hugs,
    Shel
  10. I just had the pleasure of viewing your daughter's art... and WHAT a gift she has! What a blessing to see her artwork! Thank you for sharing your website with us, Ian!

    If you don't mind me asking, how old is your daughter and did she take art lessons or classes at a young age? The reason I ask, is that my youngest son (age 11) has seemed to have a gift for visual art since he was very little (something he seems to have been born with) ... has won competitions, etc... mostly he sketches... and his attention to detail is amazing, like your daughter (not at your daughter's level though!). However, we've never gotten him involved with art lessons/classes, mainly because of my health and the problem of getting him there. So, I was just wondering if art classes helped develop her gift or not.

    Again, Ian, thanks for sharing your daughter's gift with us! Her paintings are breath-takingly beautiful! ( I esp love "In the Blossoms" and "Moving the Herd"! But they are ALL gorgeous!

    Blessings,
    Shel
    [This Message was Edited on 02/08/2013]
  11. Saoirse3

    Saoirse3 Member

    I get angry with my doctor and yell "Okay, Dr. "I got my degree from Tufts. Supposedly that makes you smarter than me. So FIX me!" He apparently didn't get that far in the textbook. He claims to have better access to better websites. Better than Mayo? Oh, but patients can't access them. Why is that? I'm not going to a home liver transplant from a YouTube video! So either there is some secret club, or keeping me sick keeps him in his Mercedes. If I protest I get a series of questions about my sanity ( Do I know my name and where I am and what day is it? Ummm....Mary Todd Lincoln, Ford's Theatre and don't trust anyone named Booth). I THINK the real unfairness lies in lack of information and doctors don't give it the recognition it deserves. The ridicule and disdain doesn't help. The SO called specialists need for see us for what we are. We are sick not stupid!
  12. neoplus1

    neoplus1 Member

    "I just want a piece of the "getting well pie". I love pie. Why can't I get a piece of that pie?????"

    This statement speaks for so many of us. I will remember that quote for a long time.

    What I hate the most is when I am in a doctors office and when I tell him/her that I can't work because of this, they look and act shocked even after I have told them what my symptoms and what these illnesses are like.

    If I were diagnosed with heart failure, they would not be shocked. I wouldn't have to explain anything. On top of that they act like after a few doses of an antidepressant I will be up and working again. It amazes me because these individuals are supposed to be so bright and intuitive.

    The truth is, there actually is quite a bit known about these conditions. Once you look closely at the evidence, you realize we have uncovered a lot about what is physically going on in a lot of patients with ME/CFS, so the idea that these physicians don't know much because there is not much known is a load of bull.

    Because of this I don't even really see physicians right now and haven't for months. Before that I was only seeing my physician here and there.

    When someone wants to try things like mitochondrial supplements and another person speaks out against it and says you should be under the supervision of your physician, I think to myself "why?". For most of us with the doctors we have access to, what good would that really do?

    The doctor would probably try to talk the patient out of it without offering anything else and even if the doctor were okay with it, he/she would hardly be supervising because they probably know less then we do about using these things. I don't think my doctor even knows what ubiquinol is.

    You want to know a secret? Sometimes(very rarely) when I get really upset with how people treat me because of this illness, I fantasize about a global infectious disease outbreak with a super bug. BUT, those of us with CFS and Fibro are immune because of a defect in certain immune cells. I know that is bad to think about and I feel guilty after, but I just can't help it sometimes.

    Michele and others, I truly hope all of you get better and recover. When I meditate or do qigong, I try to send my love and energy to all of you. I do believe the is turning and has been turning for years. It is possible to feel better and get better. Know it. Believe it. Keep hoping.

    -steve