20 Years and ME/CFS Is Still Hard To Adjust To

The past 2 to 3 weeks have been extremely difficult as I fight another ME/CFS flare.  Everytime I have a bad flare, I feel like I did when I first got sick.  I’m scared, frustrated, angry, confused, depressed and feeling so sick I don’t think I can go on.  To be honest, if it weren’t for my son and husband I probably would not still be here.  I have felt many times over the years that my life has been a waste thanks to ME/CFS and I’m tired. 

I’m tired of always feeling bad; I’m tired of never knowing from one minute to the next what is going to trigger the demon of ME/CFS in me; I’m tired of wanting to accomplish so much with my life but always being held back because my body won’t let me accomplish what I would like.  I’m tired of not being able to play with my son as much as I would like.   I am so tired of being alone with this.  It doesn’t matter how many friends and loved ones you have around you.  When you have CFS, you always feel alone because no one can understand what it is like to live like this.  I’m tired of losing friends and relationships to ME/CFS.   I’m tired of being in pain all of the time.  I’m tired of having to explain to yet another person why I can’t do this or why I can’t do that.  I’m tired of working hard to get healthy only to be met with another flare that knocks me on my ass for weeks or months. 

One thing that chronically ill patients will say is that they hate when their illness is compared to cancer or AIDS.  People will try to cheer us up by saying, “At least you don’t have cancer/AIDS/any terminal illness”.  When people say this, it devalues our illness, it devalues us and it is very insensitive.  People don’t realize that an illness does not have to be terminal to be severe.  ME/CFS is just as devestating as cancer, AIDS, and many other illnesses.    Who is to say for sure that our illness is not going to kill us? 

How many of us have wished for there to just be an end.  Yes we will eventually die, that’s a guarantee.  The thought, however, of living another 40 years like this just seems so unfair and so unjust.  I’ve already lost 20 years.  I think I’ve done enough time.  I want a cure.  I want medical help that’s not going to bankrupt our family.  Right now the only help for ME/CFS patients is too expensive for the average working person to afford.  I want to be taken seriously.  I just want a life.

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  1. First, by reaching out to you I hope you will realize that you are not totally alone. I, too, have suffered with Chronic Fatigue Syndrome for 20 years and a lot of the time I get very frustrated. It is amazing to me to read your words and realize that they are some of the same words and feelings I have heard in my own head. I don’t have a family of my own, but the thoughts of wanting an end definately resonates. There are times when I have said that if I can’t feel better by a certain age, I will end it.

    My heart reaches out to you and I really hope that you can find some peace of mind. I am traveling the same journey of trying to not give up on hopes and dreams. Trying to have faith that my dreams can come true and that I can live. This illness made me realize that I have never lived before and that I really want to.

    I ran across a doctor that has a natural approach to enhancing quality of life for people with Chronic Fatigue Syndrome. It has worked at times for me, but at times I get frustrated and self-sabotage myself. I think that if I stuck to the program consistently, I would be much closer to normal. I guess I still want a magic bullet and I don’t give my body the time to truly repair and heal.

    It is not the programs fault that my faith is so diminished after trying so many different things off and on for the last twenty years. In order for things to change in our lives, we first have to believe that they can and will. It is hard to follow any program, if you don’t have belief and faith anymore. This is my struggle. Chronic Fatigue Syndrome can erase any faith you may have once had. This year I am just going to focus on follow the program and working on my faith and mental outlook. I am going to try and follow the program, even on those days where I don’t feel any results and want to do something self destructive like eating foods I am allergic to.

    I’ve read all the books on CFS, energy metabolism, etc. This doctor’s programs seems to be the only thing that really works.

    The doctor has an ebook that breaks down her approach. If you email me, I can send it to you and then maybe we can discuss it and provide each other support.

    Thank you for making me see that I am not alone!

  2. Hey, I’ve never actually posted anything like this but I read your comments and was very moved. I’m 22 and have had CFS for over 14 years. It’s horrible to feel so alone and hopeless and all I can say is keep your chin up and treasure every moment u can laugh, every second you feel almost normal. Life is worth living, even when 364 days of the year you can’t rise out of bed. Hold on to that one day you can, and don’t let go of your hope.

    I had previously thought of ending things when I was too unwell to attend high school and suffering alot of pain but now I believe that I can do this, that you can do this. You arn’t alone and I believe in you. I don’t know your names, your stories, your individual pain, but I do care.

    Stay strong no matter how weak you feel.

  3. Following my very recent diagnosis of ME/CFS, I have set up a blog as a way to help me cope with whatever is going to come next. Also, I am already aware that I have lots to learn and as a result feel a little bit lost at the moment so hopefully communicating with other bloggers who are in a similar position will help me in some ways.

  4. Thanks everyone for your concerns and for your compassion. I thank God every day for my family because when I look at my son and husband, I see a reason for living. I can relate to terminally ill patients saying that they are tired of fighting and that they are ready to go. I have my bad days, my ups and downs, and that is what this site is for. To help myself and others realize that we all go through phases in our illness. Take care and lots of health and happiness to all!

  5. Lisa a Moulton says:

    I have had fibromyalgia for a 1 1/2 and my doctor started me on Savella now. I’ve have tried everything so far and it works for awhile then it doesn’t. I’m hoping this works for me.

  6. Deb Haleluk says:

    Dear Sister,
    I started to cry as I I read your story. I’m on your same page,having a bad
    flair up lasting about 10 days now,one of the worst ever had. Up to my limit with the medical field so far.I feel like I’m dwindling away. My energy level has posponed so many thing in my life,I now forget how to even get back again.

    Pretty hard to swallow all the broken relationships,when at the time they went down you were too darn weak to even care. I had a type A personality,super star in Real Estate for 16 years,fought fibro and cfs since I was 40,that I can remember now I’m 56 and couldnt even get in and out of my car when I finally threw the towel in 7 years ago. I tried going back,pushed myself again,one last time,couldn’t do it. It’s so sad to me, I loved it, now I dread when I have to go to a dr. app. and I wont have the energ to get their or the whole shower thing.
    I’m going on and on, stayingin bed today or close to it, which is hard for me, but I have to gain some energy back
    chatting like this is also new for me, I’m reaching out,

  7. I’m suffering with CFS and FMS too, having had undiagnosed Lyme and babesiosis for years. The main thing that helped was the Teitelbaum protocol, in particular fighting intestinal candida. Though improved, I still have constant pain and flares. I’ve never heard of a cure that could be had for ANY cost. I think even with a million dollars it wouldn’t help. But if you know of even an expensive treatment, please write about it so I can daydream that I could do it.

  8. I know how much you must mean every word you wrote because I have the opportunity of meeting and working with many who suffer as much as you do…and I hope and pray that you will find the help you need. We would love to be able to help you, but even if we are not able to I will share some of the principles that really help people to reverse their fibromyalgia and regain their lives and energy again – may these ideas bless you. A whole food plant based diet – totally vegan – no animal products whatsover, no refined products such as refined flour, rice or sugar. No oil except as naturally occurring in avocado, olives, nuts. Lots of fresh fruit and veg, whole cereals, grains and some nuts – it is amazing how much great food you can make from simple ingredients without having to spend hours in the kitchen. No coffee or tea or caffiene. No smoking. Lots of water – at least 8 glasses a day. Gentle exercise such as daily stretching and gentle walking – 10 minutes or whatever you can manage after each meal is helpful. Hydrotherapy and massage can be very helpful. Adequate rest each night. Frequently those with fibromyalgia have sleep problems, but as they take hold of the lifestyle recommended and as they slowly persevere in it, including the gentle exercise, sleep does improve. Lots of fresh air and a little time in the sun each day, and trust in Divine power. Hope something I have shared will bless you and help you on your journey.

  9. I’m sure you mean well Colleen, and I’m really happy for anyone who feels even a tiny bit better from doing what you have suggested, but I have tried it all, and I have friends who have tried it all – healthy diet, gentle exercise etc etc. and it did nothing to help me or them. In fact, gentle exercise saw me regress and confined to bed for weeks. When ur body tells you your not up to it, then your not up to it. Frankly, it really aggrivates me when people claim they have the ‘answers’. There are no documented cases of anyone who genuinely has this condition making a full recovery. It’s not me being negative, it’s just the facts. While diet can lead to a healthier lifestyle it DOES NOT lead to a cure.

    That is my rant for the day 🙂 hope everyone else is doing ok & keeping your chins up!
    Oh also visit http://www.whataboutme.biz for a trailer on an upcoming documentary which looks fantastic

  10. I’ve had CFIDS/ME for 12 years and I am also surprised when I have a flare up that lasts more than a couple of days. Sandy, when I read your post I could really identify with all the emotions you experience. I know the anger, frustration, loneliness….feeling that I still want to accomplish so much and sad when all I can do is stay in bed all day.

    OK, most days I’m grateful that I’m not alone. I have a husband who loves me even though my situation saddens and baffles him and makes him feel helpless; I have a home; grown children and grandchildren (even though I don’t have the energy to spend as much time with them as I’d like); friends and family who love me and pray for me. Soooo, lots to be grateful for.

    What I don’t have is a friend who has CFIDS. Since I’ve had this illness for so long, I sometimes wonder if there is something else wrong with me….even though many tests have shown no abnormalities.

    Please tell me how you feel physically when you are in a flare,

    • Hi Lolalee! I am so glad you found my website. There are so many of us out here who know what you are going through. I don’t have any close, personal friends with CFS but I have made a lot of online friends through this website and Facebook who help me at times that I need it. There are also many internet CFS forums available where you can talk with others about your symptoms. When I am in a flare, I feel so exhausted that I feel sick, if that makes any sense. I feel as if I am at the lowest point I have ever been in my life mentally and physically and I don’t want anyone around me, I don’t want anyone talking to me, and I just desperately want to sleep. But I’m sure you know that it is at these times when we can’t sleep.

  11. It seems that we read one article and the comments from part of all of them all connect together I will read an article and think Oh!I should have saved that part for the article. Have any of you had trouble falling I would fall down so much. I fell at fry’s one time and two workers came running and my husband from the other side I was so embarrassed they should did run fast they thought I would sue them. I fell at home all the I had so many bruises you would think someone beat me up. The funniest was I was at Hallmark thank goodness it was slow I knelled down to look at something on a low shelf and went down straight on my face what went though my mind was no one is here so I stayed on the floor for about a minute and a half I was too tired to get up and I did look around so I got up and went about my shopping. For about a year now I haven’t been falling but I sure do knock into things. You know afterward, sometimes we just have to laugh at ourselves. Phyllis Dominski

  12. Hi Sandy,
    I read your post and feel the exact same as you do. I have had cfs/me and fibromyalgia for 9 years now. Just saying that number breaks my heart. I can’t believe I have suffered for so long. I got ill with mono and then developed this horrific illness when I was 18 years old. I don’t normally write on these sites, but I am sitting in bed right now with a flare that has lasted 3.5 weeks. Which unfortunately, is not uncommon. It is so frustrating not knowing what will trigger the flare and how long it will last. I’m a part time teacher and even working part time is a big struggle. It also does not help when people think you look fine, but you are actually suffering with intense fatigue. No one understands my illness from my parents to my friends, and even my pastor. It’s frustrating when people suggest things like exercise and eating veggies. I would love to exercise, but it’s difficult for me to just walk to my bathroom. I’m all for eating healthy, but I also have severe food allergies which include lettuce, tomato, spinach, corn, peanuts, chocolate, wheat, yeast, beef, pork, artificial sweetener, caffeine, all dairy,(basically any plant). So eating healthy is not easy when you are allergic to everything. I totally agree with you when you say this illness is just as bad as cancer or aids. In fact, I see people with cancer in hell of a lot better shape than I’m in. Sorry, I just needed to vent!!

    • Hi Erin, I am so sorry to hear that you are having such a rough time. I can definitely relate except for all of the food allergies. Thank God I can eat most foods even though I have found that wheat and sugar definitely make me feel a lot worse. I am glad to be here for you to vent so come over and vent anytime you need to! I hope you can get some relief soon and I’ll have you in my prayers.

  13. I could not have said this better myself. Everything you say fits me to a tee. I’m currently having a flare up, yet again, and it’s just so awful to try and look/act normal when you feel so poorly. I know this may not help but I could have written your comments myself. I so understand how you feel (physically and emotionally).

  14. To all sufferers of CFS,
    is there anything that helps you reduce a flare from starting or get better quicker from a flare? This time I have been suffering for 31 days straight from extreme fatigue. I have started juicing organic fruits and veggies and I have also removed my laptop from my bed (I read something about the electromagnetic waves causes fatigue). I think I have felt a little better…maybe. Does taking antibiotics flare anyone up?- Erin

  15. I found a cure for my fibermyalgia. I had bariatric surgery and then went to the Born Clinic in Grand Rapids, Michigan. They tested my hair, blood and urine and put me on a short-term large dose of vitamin and mineral supplements. On top of my new high protien diet I had no pain for nearly a year, that is until I started eating wheat and breads and pastas again. Darn! So now I am going back to detox mode and for $300 am going to go back to the Born Clinic. 5 hours a week of work time is not good. I hope you find something that works, even if it buys one pain free day week. 5 hours of pain is psychologically damaging to try to work under. Get rid of one disease and the other will fade away. Now on top of all of that throw in the week of pms, the week of the period and menopause. How confusing is that?

  16. Hi. I also suffer from CFS. It started a few years ago. I could barely move for months and became allergic to almost every food and vitamin, drug, plant, etc. It was nuts. Doctors didn’t help me. They just told me I had apparently had Epstein Barr Virus (maybe mono) and it may have caused CFS. They told me that I was allergic to almost everything but had no idea what to do about it. I started seeing a nutritionist/kinesiologist who I still see. She atleast helps me get some strength back with whole food supplements and identify what I’m having a reaction to currently. My “allergies” can change at any time. I have the main ones which are severe and then I have sensitivities which change all the time. I haven’t really found anything that makes me not feel exhausted every day of my life. I can’t tolerate B12 or any of the hypothyroid drugs they tried on me. I recently tried Valtrex and that gave me my life back quite a bit. Before I was on it I still couldn’t get out of bed. Now I work full time, although I get home and pass out, but what can I do? Have no husband. Have to work. Just wish I could find an answer. I hear you!!!

  17. Pretty pixie says:

    Hello every one
    I have been reading all your comments as I too have just found out that I have cfs/ME. Im trying to get my head around it actually sinkin in even though iv been poorly for a very long time now, recently worse than ever.
    Today is the end of a recent flare up, I was only diagnosed yesterday and today I feel fine. So reading about the illness just doesnt seem real to me…….i guess until the next episode I have. I am a mum of 3 very active children and am not in a relationship, and think to myself now will I ever find anyone who will love me for being me, especially considering im never well enough to actually go anywhere???? I dont know, I seem to just spend hours lately resurching this illness and feeling pretty alone. Reading all of your comments have given me a little bit of hope, but its just not sinking in!!lots of hugs and wishing veryone a pain free day 🙂 xx

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