ME/CFS...A cruel reality...

Discussion in 'Fibromyalgia Main Forum' started by Godismystrength, Sep 14, 2012.

  1. I'm sure most of you can relate... I used to be a very active and outgoing person. And even with this DD, I continued to push and do things whenever my body would allow me to. I especially loved doing things with and for my friends and family. But as this disease has progressed, and I've been able to do less and less, I feel so isolated, alone and forgotten... Most of the time, in spite of what I may be suffering, I am still thankful to the Lord for so many things! Usually I don't let this DD get to me but instead choose to focus on the Lord and His blessings. But today, for some reason, I just feel so heavy hearted and useless!

    I guess what really hurts, is that I live in the same town with my parents, siblings and their families and they don't seem to care at all about me or what I'm going through. I don't expect them to lavish me with attention... wouldn't want that. But my reality is the other extreme. I do occasionally hear from my parents, but it's few and far between. The irony is that when I was healthier, I was the one who kept family traditions alive and had family gatherings at my house frequently, not just holidays. I also was always the one to reach out to them when they were in need or going through a rough time. Now that I can no longer do that, it's as though I don't exist. And sometimes, like today, it cuts like a knife to my heart. How can people you were once so close to be so cold?? I KNOW if the situation was reversed and one of them was suffering, I would be there to show my support... even if it was just leaving a message of encouragement on their voicemail.... but I know I would give practical help too. I don't know... I really wish it didn't bother me at all... Its bad enough that this disease also caused me to lose friends. But one would hope you could count on your family. We've even given them literature that explains about what ME/CFS is and what it does to the body, but I guess they don't care. Its just a very hurtful reality. I try not to care, but it goes against my nature. I am a very compassionate, empathetic and sensitive person by nature....

    Also, when these thoughts start harassing me, THAT'S when my frustration with my limitations from this disease seem to escalate and my mind floods with memories of how it "used to be".... when I could be productive and helpful to others. If people could just crawl inside our bodies and feel what we feel for just one day, then MAYBE they would understand and have compassion....

    My faith is strong and is the only thing that keeps me going most days, but I'm still human, so sometimes, like today, it gets to be too much. It would help if I felt my family cared... its worse to be in the same town and have them essentially forget you exist than to not have family at all.

    Sorry for rambling... but I know that most of you can relate or at least empathize. Please pray that I can stop being hurt by other's indifference and callousness. Thanks for lending me your ear...


    [This Message was Edited on 09/14/2012]
  2. lvjesus

    lvjesus Member

    I know how it feels like no one cares how you feel sometimes, but HOPEFULLY it is more laziness on their part than uncaring. I know I think of friends I SHOULD visit all of the time but I get stuck in my rut and wind up staying at home or whatever most of the times.

    I know you probably don't want to say anything about it either, but maybe if you thought you could you could just mention to your parents that you miss them or whatever and invite them over to visit.
  3. MicheleK

    MicheleK Member

    I am so very sorry that you are experiencing the heartache of an apathetic family toward you and your situation as you try to live with these illnesses. I can very much relate. I go through the same thing with my family. Not one of them will even ask me how I am doing or offer to help me with anything. It can be hurtful when one is feeling very low.
    In my case my mother and siblings all talk to one another a regularly. I am invisible and they are absolutely not comfortable with me being ill so they choose to ignore it. I know that on some level they love me but they fail to show it. So many patients go through this. It often stems from the media and medical world having misrepresented the illnesses. Many simply don't beleive we are as sick as we are and some feel if they ignore us, we will give up on "trying to get attention by acting sick".

    It is interesting that so many of us were way more active, giving, and empathetic to others than any of our family members who now choose to think we would rather fake an illness than live our lives! The irony of this is not lost on me. None of my siblings, nor my parents have much drive, so it is almost a joke to me that they would impute such motives onto me. Perhaps you go through this same scenario.

    Either way, your feelings are justified and you will feel them today, perhaps tomorrow and you will get tired of feeling it so you will put it away into whatever compartments inside you you have created to cope, until the next time it comes to the surface, when you will feel them again and on it goes. Hopefully the periods of not paying it any mind will last longer each time. That is what happened with me. I rarely feel hurt anymore because I have learned to feel pity that they are in such a state as to not be able to show love and compassion to their own.

    There is a proverb that says: Expectation postponed is making the heart sick. It is natural for us to expect that our families or friends will stick by us. But when we don't have that kind of family, we might need to change our expectations for our own sake, in order that we might be able to feel less vulnerable. It is not easy. It can take many years to achieve and none of us can do it every day of the year.

    Take heart. You are normal. Your desires are normal. And certainly you are deserving of love and good works being shown to you. We do understand here and it is nice to be able to support one another when we get a day that it just feels like our hearts will break. Hugs, MicheleK
  4. Thanks Jam, lvjesus and MicheleK for your responses... I so appreciate it!

    lvjesus, I do invite my parents over when I'm feeling up to having company. For me, my biggest problem from the ME/CFS is the extreme weakness and neurological symptoms. When I'm in a bad flare, as I've been, even talking drains me and I can't sustain a conversation for very long (which is very hard for me cause I like to talk!)...the ME/CFS also affects my breathing and can make it difficult to socialize. I do enjoy when my parents can come visit, or anyone else for that matter, though its not as often as I'd like. But I was talking more about feeling support and caring from my family (which is almost non- existent)... even a quick text or phone message saying "Just wanted to check on you and see how you're doing" or "just wanted you to know I was thinking about you and praying for you." Doesn't have to be much to be encouraging. But thanks so much, lvjesus, for your kind response!

    MicheleK, I can't thank you enough for taking the time to write such a sweet and thoughtful response. It brought tears to my eyes. I'm so glad I'm not the only one who feels this way! I'm just SO sorry that you have to deal with the same hurtful situation, Michele! It is SO not right! Like you, I can usually not let it bother me. But occasionally, like today, it'll start eating away at me and the tears start to flow. It especially hurts when I hear about one or more of my family reaching out to other folks or requesting prayer for others while not doing anything at all for their own flesh and blood. It really baffles me. But, I'm just praying I can accept it and not let it get to me anymore. I know you are right about not having expectations. Usually I don't... but you're right that its hard to do that ALL the time. But I am certainly going to be praying about it! Again, bless your heart for understanding and being so kind and supportive. It means more than I can say!

    Jam, I have tried acupuncture a while back... just very difficult to get to ANY appointments anymore since my ME/CFS took a turn for the worse. But you are right... we can't control others... still doesn't make it hurt any less though. So sorry to hear that you don't have your faith anymore. Don't know what I'd do without mine. I do believe that suffering leads to spiritual strength if we allow it to draw us closer to God. I am thankful that this illness has caused me to have a closer relationship with the Lord. Even so, my human frailty can get to be too much sometimes and I can get frustrated with my limitations and feel useless at times. I think it's a basic human desire to feel useful, productive and needed... and severe ME/CFS can rob us of that, especially if you have trouble fuctioning at all. But I can't thank you enough for caring and responding, Jam!

    Thanks again to all of you for taking the time to respond! Your compassion is very encouraging! God bless each of you!

    Blessings and Soft Hugs,

    [This Message was Edited on 09/14/2012]
    [This Message was Edited on 09/14/2012]
  5. keke466

    keke466 New Member

    I know how you're feeling.You're telling my story. I've been in my house,this time,for a week and 2 days without going anywhere or talking to anyone. I've been having another depressive,anxiety filled week. I didn't even feel like texting anyone and I,too,like to talk. Not even the sister that usually will call or text at least once has contacted me this week. For several days I couldn't even "talk" on the computer. I'm the oldest of 6 and I've always been the one to keep things together. I organized all the holiday parties and had most of them at my house and I'm single. I paid for everything. I kept up with all of them and their kids. the youngest girl and boy lived with me and their spouses and kids at one time. Again,I paid for everything. At one time,the 2 youngest boys lived with me. I have always been a caregiver and put me last. I worked 2 jobs,16hrs a day for a long time to support us all. Not one of them let me claim them or their kids on my taxes.

    When they finally started to get themselves together,and I use that loosely,I still helped out as much as I could and planned get togethers and made sure we were all ok. At age 41 when I was Dx with FM I didn't know anything abt so I thought,well I'm gonna be in a little pain from x to x and all will be ok. Then I started getting worse and started reading and learning abt it and I thought OMG,what am I gonna do. I continued to work FT and when it got to where I couldn't give some of them money all the time and I stopped doing all the planning and so on,it got to where they just stopped coming around as much and just didn't really care. This was mostly the youngest brother and his family but the rest also.

    We weren't around my Dad much,that's another story,and my Mom wouldn't do it and things just got worse over the yrs. At this time,I haven't spoken to my Mom in 5yrs,she won't talk to any of us girls or the grandkids,that's a whole nother story.

    My middle sister lives in her own little world,it's all abt her,she's kinda like Mom but not so mean and hateful and she does care but she doesn't ask how I feel or anything and she texts or calls when she wants one of my xanax or pain pills. We get along,mostly,when I go to her house or call or text her first. At this point,us 3 girls are all we have,even though it is as it is. The older brother doesn't come around,we never were really close to him. The youngest brother,who I was close too,doesn't come around us.Sometimes Mom has something to do with him and his family and sometimes she doesn't. My other younger brother moved away and won't come home to see any of us.I won't go into that.

    These illnesses seem to affect us that are caregivers,achievers,etc. It just plain isn't fair that we end up like this. The last 5yrs I worked I had cut down to PT,lost my house to foreclosure,don't have a good running car and am on the verge of possibly losing my apt and will they help,no. I had a little break down in Jan and I've worked 4 days this yr and finally gave it up in March and am now filing for SSd. I have no money,no savings and don't know what to do. I'm not looking for sympathy,just stating the facts. So many of us in the same situtations.

    My Dr sent me to a psychiatrist cause she said it would help with the SSD. I've been on our state insurance,I paid for it according to my income,while I was working.It ends 10-31-12 and it wil cost me 50.00 a visit to kep seeing the psych and getting meds so I wil have that report.Money I don't have. My car won't make it out of town,he's an hour away and so is the counselor,so I have to find someone to take me and pay for the gas,money I don't have. It's all just more stressfull and depressing.

    I'll stop. Sher it does help to come and tell our sorrows cause everyone here knows how it feels so just keep posting. I pray for us all.
  6. Mikie

    Mikie Moderator

    We have all gone through this and the more active we were, the harder we grieve for our former lives. I highly recommend grief therapy because we truly grieve for what we lost just as we would for the death of a loved one. It helped me tremendously.

    BTW, we have a Spirituality Board here and it may help you. If you ask for prayer there, our wonderful members will pray for you and you can discuss matters of faith.

    Love, Mikie
  7. Thank you both so much for your responses. Mikie, I thank you for your suggestions. You are so right when you say that the more active we were, the more we grieve what we've lost. And we have to grieve it like the death of a loved one. But at the same time, I am always hopeful that I will be healed and be able to regain, at least somewhat, my active lifestyle that I used to have. I think it helps to hold onto hope! I'm glad to hear that the grief therapy helped you so much! Never thought of that! But unfortunately, I've had a difficult time being able to make it to appts for the past year. I haven't even been able to get to some basic doctor and dental appts that I've needed to get to! Uuughh! So frustrating! But I know little by little I'll get there! And I didn't know about the spirituality board. I'll have to check it out. Thanks so much, Mikie!

    Keke466, thank you for sharing your struggles here. I am truly sorry to hear the heartache you've had to endure and continue to deal with. I know that the isolation doesn't help matters. Our illness is difficult enough, but when you add all the other struggles and the hurtful neglect/treatment of loved ones, it just becomes too much to bear sometimes. I sincerely wish there was something I could do to help. I hope it at least helps somewhat to have your feelings validated here. It does seem ironic that many of us that have been struck down with these debilitating diseases are the very ones who were the caregivers and the ones eager to help anyone in need. But you're right that it does help to share our struggles here.... to know that others are listening and that they understand and care. That is a blessing in itself! I am so thankful for this board and for all the caring souls who show compassion and share helpful info here! What a blessing! But I will be praying for you, keke466, and Michele and all of us that are suffering with FM and ME/CFS and dealing with ALL the difficulties that go along with it.

    Thanks again for your responses! God bless each of you!

    Blessings and Gentle Hugs,
    [This Message was Edited on 09/15/2012]
  8. MicheleK

    MicheleK Member

    I think the world must be coming to an end. Today my mother and my youngest sister actually posted in a Facebook message to me that they were proud of me and how I deal with this illness! I was laying down thank goodness, or I would have passed out right there on the floor. They have NEVER said anything like that before. They usually won't even ackowledge I am sick. So I wanted to share this news with you in order that you know there is hope of change. The fact that they said that to me on the same day tells me they have talked about it and must now really believe in the illnesses. They probably would have a very hard time saying it to me in person but I sure lit up when I got those messages. I wish the same for you all. Hugs, MicheleK
  9. keke466

    keke466 New Member

    it just takes a little kindness from people to make us feel better,doesn't it,especially from family. I would be totally shocked too.
  10. IanH

    IanH Active Member

    Shel said:
    "If people could just crawl inside our bodies and feel what we feel for just one day, then MAYBE they would understand and have compassion.... "

    I must have thought this a million times. Sometimes it seemed the only way anyone was going to appreciate the illness I suffered. It is really important to have good literature and a summary of CURRENT research. Also a sample of websites for them to visit to give an appreciation. When people who don't know about the illness look up the internet they read Wikipaedia which has a bad summary of the illness and emphasizes CBT and Exercise as the most effective treatment.
  11. Mikie

    Mikie Moderator

    Even as I grieved, I kept researching and hoped for healing. It's all a process. I think once we get to acceptance, it frees us up to help ourselves heal. Acceptance does't mean we give in or give up; it just means we don't spend our time in denial, anger, depression or bargaining with God, the typical steps of grieving. Of course getting to acceptance isn't a linear trip. We can have one foot in acceptance and another in anger. It can be a long trip but one, I think, is vital to our healing.

    Love, Mikie
  12. I love your "I think the world is ending!"... thanks for the chuckle! But how wonderful! I believe in the power of prayer and that God can change people's hearts! So happy that's happened with your mom and sister. That is HUGE! I am so happy for you because I know how much that means to you! And it does give me hope for change in my family as well. I sincerely hope the same will happen for keke and those of us who would be so blessed by that support and validation.
    I just realized that I haven't been praying specifically for MY family's hearts to be changed regarding my illness... I need to start doing that. But I know, Michele, that must have made your day! Maybe even your year! I KNOW I would have the same reaction of being shocked if ANY of my family said anything like that! Thanks for sharing this wonderful glimmer of hope with us!

    She'll :)
  13. I don't know what happened, but I was finishing a response to all of you on my cell phone, when an incoming call caused me to lose it! Grrrrr! I'm not doing well today cause I pushed myself beyond my physical limits yesterday while my son is in town, so I can't retype the message just now... too long and I'm worn out. PLEASE check back though... I will retype it hopefully later. Thanks!
  14. MicheleK

    MicheleK Member

    It did make my heart swell. However, I will not bring my illness up to them even still. I learned that if I do that they immediately put up an invisible wall between us. I have had these illnesses for 20 years with the past 6 being severe. I beleive the change has come about from them privately reading my Facebook posts and watching my involvement in advocacy for these diseases. Them being able to read on my page so many other's stories that sound identical to what I had described to them all these years somehow has made them begin to realize that I have truly been quite ill all this time. I can't imagine how that feels to realize you've been so cold to someone who needed your love and support. I will keep hoping for change but I do not ask them for it and I don't even talk to them about my illnesses anymore. I have many kind people such as those here and elsewhere who I can talk to about this "lifestyle". I am so very thankful for the internet and the patient community!
  15. sunflowergirl

    sunflowergirl Active Member

    It's obvious they were talking about what you go thru......I wouldn't be surprised if they never mentioned it to you though, but FB is good too. Wouldn't you like a "tape recorded session"??????

    I've lost friends, had relatives look at me "funny" and just change the subject or ignore really, really hurts deep in my heart. There's so much talk about FM in the last 5 years that a change IS taking place. Remember when we all just wanted OPRAH to acknowledge it? At least in So. Calif it seems to be an accepted "condition". I guess there are still pockets around the country where the doctors are still in the stone age.

    I pray that one day a lab test would be able to confirm what we all go thru, but until then we have to keep struggling.

    Shel: we can all identify with your story. I was very active even after coming down with this almost 20 years ago. If it wasn't for my husband living in this house I would be a hermit. Friends have given up on me since I could never count on how I would be feeling. My husband understands and pitches in with household chores, but rarely asks how I'm feeling. Guess he's tired of the old story I am.[This Message was Edited on 09/16/2012]
  16. MicheleK

    MicheleK Member

    Sunflower, I sure would love to be a fly on their wall now when they get together. LOL

    I was so active before I became ill too. I did everything and loved it! Even ill in bed, I do quite a lot, though I am invisible in person, I have a nice life online. I have come to know many patients who feel more like family to me than some of my own blood. It is nice to have such friends and is one of the blessings I can count even though I am quite ill. It makes me happy inside. Being happy inside is more important the what I can do physically. I feel very badly for those who also fight depression. It is an added burden that weighs heavily on them.

    I too would see no one if I did not have my husband living here. As it is I have to be alone and quiet half the days so even with him here, it is like I am a ghost many days. My husband is excellent about my illness. He takes good care of me and asks me numerous times a day how I am. Sometimes I want to say "do you really think it's changed in a couple hours?" But reading your post made me remind myself to count the blessing that he does verbalize his concerns.

    Sometimes too these illnesses make me feel like I just want to be alone with no pressures felt that I should be interacting. That being said, I surley would never really want to be all alone. There are so many patients who are and it drives them to despair. We were not meant to be alone and invisible, so it plays on our emotions.

    Looking forward to progress on the medical front and the hope of some kind of more in depth life returning keeps me going. Hugs.
  17. Thanks so much for all of your responses and for sharing your thoughts and feelings. I appreciate it more than I can say!

    Ian, I agree that we need to share current info on our disease. I do try to do that... just seems that no one really seems to care for very long. But I really like the "Fact Sheets" on the Australia ME/CFS site. They are very thorough and seem to be on point and cover many diff sub-topics, like: "Newly Diagnosed", "Family and Friends", "Learning to Pace", "Working With Your Healthcare Team" (although with that last one, I found myself asking "what team??" But that one is full of great info too), "Diet and Nutriton", etc . I couldn't help but notice that Australian patients with ME/CFS seem to have a lot more support from their government and insurance and have many services available to them that has nothing to do with drugs. This makes sense to me because most who have ME/CFS have severe Multiple Chemical Sensitivities so drugs are not an option anyway. But ME/CFS patients seem to be better provided for there. I hope our government follows suit sooner than later.

    Keke466 is so right when she says that a little bit of kindness can make such a difference to those of us with these debilitating diseases.

    Michele, I like what you said: "we're not meant to be alone and invisible, so it plays on our emotions"... I couldn't agree more! It is especially difficult for those who have more extroverted personalities to be hidden away by this disease. I guess I'm a little bit of both, but leaning more towards extrovert. I DO like my solitude and enjoy alone time with God... but this disease causes us to be alone wayyy TOO much. And we do our best to adapt.... but it's never easy. NOTHING about this disease is easy....

    Mikie, I agree that acceptance is key to healing. Harboring anger or staying in denial will only make us sicker. Patience is key too (that one can trip me up from time to time!).... I am patient with this disease MOST of the time, but there are days here and there when my patience wears thin and then evaporates... thankfully, those days are more the exception!

    Sunflowergirl, you said you would be a hermit if not for your husband. I had just told my husband the other day that I felt almost like a hermit because I don't get out much and rarely get to see people, other than my husband and children. Usually its just my youngest child I see since my older kids are grown and either live very far away or in college about an hour away. Still, my exhuberant spirit is quenched most the time by the effects of this illness, so I don't even have the opportunity to be my true self most the time but rather, what this illness has made me. THAT'S what is so cruel about this illness... Because it robs us of our vital energy, we have no choice but to be quieter, stiller and barely here. Even talking, reading, anything that uses our brain (not just physical movement) depletes us quickly of this precious energy that is almost non-existent. Before I knew what was wrong with me... before I had the diagnosis of ME/CFS, which for me was almost 7 years, there were times I truly thought I must be dying because I could feel the "life-force" inside of me dwindling to the point of barely having the energy to BREATHE at times and would be temporarily paralyzed... unable to move a muscle. I wonder if anyone else here had a similar experience??

    But here's hoping for better days ahead! I am so thankful for the recent news of this disease getting the attention it deserves. I pray no one else has to go through years of not knowing what is happening to their body and going to countless doctors in the hopes of getting a correct diagnosis. And maybe someday, we won't be "invisible" anymore but will be treated with compassion and dignity the same way that cancer patients and patients of other well-known diseases are treated. I also continue to pray for a cure.

    Thanks again to all of you! I LOVE this community! You are ALL such blessings! And you are all heroes in my book! Thank you for your support and encouragement and for your persistence in carrying on in the face of such a debilitating disease! You are all an inspiration!

    Blessings and Gentle Hugs,
    Shel :)
    [This Message was Edited on 09/17/2012]