You are not a monster. This horrible disease has done awful things to you and yes, I know the feeling of blaming yourself for having listened to others rather than your own gut feeling. How much better off most of us would be if we'd known then what we know now.

You were in denial and now you have all of the other stages of grief to wrestle with as well. Losing those extra curricular activities is like losing a part of yourself. What you were and what you imagined you would be are gone - perhaps forever, your fear whispers to you.

Anger is a natural reaction and I have been through it many times in the grieving I have done for each part of my life that this disease has stolen from me. Learning to live with what you see in the mirror is a tough process and learning to still love it an even harder one again.

Just know that you are still you and there is a way that you can adjust to the nightmare our lives have become is not only possible, but essential.

All my love and blessings.

Carol.

It's natural to want to put blame for everything that's happened because of the CFS but don't blame yourself. This is the illness'fault and not yours.

For a long time I was very hard on myself and pushed myself harder than I should to make up for my difference in energy. I'd work even when I felt tired or had brain-fog just to meet deadlines and eventually that built up to me being unable to meet them and I got more and more frustrated by not being able to until I had to quit.

What broke that cycle was when I started looking out for myself more. I took away all those expectations of what I had to meet and started just doing what I could manage, giving myself lots of rest in-between.

This disease is terrible, but us being hard on ourselves for not being well won't help. If nothing else you should be proud for persevering with this awful disease, I know I am (Of you)!

Lots of love.

I agree with all above! And just to add..I became aware something was going awry with my health 35 years ago and tried to be attentive to my diet, was doing research on the symptoms, take care of myself when I was fatigued, and avoided smells, chemicals and the cold wether that I could tell I was sensitive to. All the initial strange things happening to my body, went to every kind of traditional and no traditional treatment option, and NOTHING kep the disease from progressing. So don't blame yourself ......no matter what you did, god outcome could have been the same. This disease, whatever they wind up discovering exactly what it is, is has its own course of development based on lots of variables unique to us and you can't second guess what you should have not if not. After a few years of staying in bed a lot and realizing I still wasn't getting better, I decided to start pushing myself to move and do things, dragged myself around, and got involved in life a bit more, tried some mild excersize and stretching.....I was involved in all kinds of things abd I'm glad I did because now I'm getting hit with age related things too, and back problems which may or may not be related to anything else. But I can look back and feel I've lived a full life, even if I don't do anything much from now on. I'm glad I pushed myself so that I have some amazing memories. I think I would have wound up with everything I'm dealing with now anyway, but without the richness of those experiences. It's a balance...and nothing is to be gained, but it is hard on our health, to be judging ourselves for what we did and didn't do, there s no " right way" to live with this illness. Give yourself love and kindness. Sending you love and hugs.

Hi SadieBee, I too agree with what's been said. My disease didn't appear until my late 40's and 50's. So. I had done a lot of what you might call 'regular life' up until then for which I'm most grateful. I still continued to be a bit of a health nut and go to the gym and overdo things and wear myself out. Then, I started going to alternative doctors to find out why I was feeling so depleted, etc. etc. I thought it was hormonal. Maybe some of it was. Sometimes herbs and acupuncture did help me. Sometimes not. Did taking fillings out of my teeth help? Probably, yes. But the symptoms got worse. Did I listen to my body signs? Yes. So, like Starsister says this illness has a progression of it's own. It's normal to be angry and grief is certainly a part of it. I too experience that. It does cause me concern to hear us blaming ourselves though when I look at all the doctor offices I went to and no one knew what chronic fatigue syndrome was. If they did, they sure didn't tell me about it. A few doctors neglected to do even basic thyroid panels which would've helped me at the very least. Adrenal testing would've been good too. It took me another ten years to find a diagnosis and a doctor who was
knowledgeable and could treat me. Granted, this is a complex illness. If the medical community and society in general is not educated about what is going on, then I don't feel obligated to put blame on myself. I like to take responsibility for my life in general, however, when it comes to this illness I need my energy to cope with what I can do from day to day, if that's of any help.

Sadie, you're not a monster. Just like me you didn't know whata delicate, sissy gland the Adrenals are!! THEY DON'T EVEN STAND ON THEIR OWN! They sit on the kidneys like a pedestal so that when it gets overworked it has a cushy pad to pass out on.

I must say that it most certainly felt like they were designed to be a strong, musclie gland that could get us thru anything. As age goes on it turns into a mushy, delicate sissy gland.

I, too, overworked the gland and paid a price. It tends to "act up" especially in a dysfunctional environment but that seemed to be the norm. As we age we work it harder not knowing that it's in overdrive then as our health worsens then we find out in the end about how weak this gland really is--Fight or flight gland!

So if it's a "fight or flight" gland than why can't it get us thru the worst of times!!!! The fight in life worsens as we grow older--college, climbing the work ladder, raising a family and just when we need it the most it takes a hike, it abandons us!!

So relieve yourself and put the blame on this weak sissy adrenal gland that's supposed to be useful in a "fight or flight mode."

I think one of the hardest things about CFD... or one of the many hard things... is that our personalities are so militantly strong and determined while our organs aren’t designed to handle all our fight. “Get busy resting”... so frustrating.
A big part of my journey has been softening my view towards me, accepting and forgiving. I’ve been on this journey 5 years and I’m still not there but I will say that in the moments we can accept our humanity and the unfairness and imperfections of life, that’s where healing starts. Mindfulness meditation is what allowed me to find this, in addition to therapy... but I struggle with it too. That grief in losing your interests and hobbies... that is real and I am with you in it. Speak your truth, find your gentleness, and I wish you healing.

Everyone, your comments resonate strongly with me. It's good, but so very sad, to see us all in the same boat. I know I shouldn't blame myself. The past is done and like some mentioned I should be and TRULY am grateful for my life experiences up until this point. I feel I have experienced life in ways a lot will never. I am learning more about my body's response every day and with that I am hopeful I can keep making small changes. I do know my tonic is nature. Sleeping one night outside lowers my heart rate and increases my amount of sleep a lot. I feel someone lets off the gas. If only I could give up society constraints to go to nature to heal and to be free of this monster.
I am going to ask another question as a new thread. I would appreciate each of your experiences.
Thank you all. I am so grateful for you all and I wish for a warm ray of sunshine for wax of you. xoxo

Greetings all.
For 22 years now I know I’ve been fighting this monster of CFS. At times, for much of it really, I believed I was the monster.

Catch that thought. Look at it. Talk to it. Ask yourself - is this logical? Is this true?
Tell yourself the truth. Painful though it may be. But the truth is you are not the monster. You did not make yourself sicker.. In fact, I think you may have held off the disease longer by doing all the things you did. I know I didn’t stay active, and now I struggle with doing minor things.

CFS takes. CFS is the monster., Don’t be another one to yourself.,

We have to find a way to practice loving ourselves because we do so easily blame ourselves and live with regrets. We did what we thought was right at that particular time in our life, and didn't realize the fragility of our bodies.
I worked my body like it was a robot, mainly trying to please others and feel worthy and accepted. I believe that my low self esteem due to past trauma and a difficult childhood largely contributed to my over working and ultimately a burn out. That combined with a heavy hit of Glandular fever knocked me down and my life has never been the same.
So often, we just can't see the consequences of our actions until it's too late and we pay a high price.
It's not an easy journey to learn acceptance of what now is, and forgiveness of one self ,especially when the suffering is long term and there is so much of your life lost.
However, our healing needs to come from all levels of.... body, mind and soul and within that... love, compassion and forgiveness.

Well said Nykodemos and aussiedi, thank you. I am working on self forgiveness and acceptance of not being able to perform at the level I once did. I am noticing myself becoming a better person, not only because of what I am going through, but because I now see the more important and sensitive things in life. I need to love this "monster" because this monster is not the true image of who I am inside, so who cares what other people think? I could always be worse and right now I am grateful for the energy and physical assets I do have. xoxo

20/20 vision in our rear view is rough. Regrets are normal. I can't add much to what the other good folks have said except to remember this illness can take your energy, damage your body but you still have your spirit to fight for. Take those feelings of regret over not paying attention to your body's signals and apply them to your spirit. It's crying out for you to be kind to it and let it heal, learn the lesson you feel you missed on your body and be kind to inner self now ... hugs

So glad my thoughts helped!

I’ve been in psychotherapy for years, learning to love myself as well.

... *hugs*

I understand what you are saying. I have been having symptoms since adolescence, mild symptoms but definitely symptoms. Now, after my last flu 6 years ago I am now living on disability and my daily life is about pacing myself and trying not to get angry at myself for what I can no longer do. I now try to appreciate what I am able to do. Daily I tell myself I am worthy, I do love myself. I find trying to stay more positive in my thoughts helps me. It isn’t always easy. I hope you find peace and happiness again.