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Chris
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Chris

I so needed to watch this today. We need to remind ourselves it’s OK to protect our energy. We are the ones that suffer when we push ourselves to avoid disappointing others. It is hard to feel we are letting our loved ones down though.

Catherine
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Catherine

I agree Dan. The most difficult comments I have to deal with are kind people who think that “just relaxing”, “cutting loose”, forgetting the discipline of pacing etc, going on holiday, doing lots of what you enjoy, on their own are the answer. They come from the understanding of their own problems which tend to be purely of a psychological/emotional nature which are indeed helped/cured by the above. I try not to get cross when people tell me that I’ll feel better when the weather perks up/the sun comes out/the days are longer!

Sue Kemlo
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Sue Kemlo

Hello Catherine i could not agree with you more i reffer to people saying : oh you,ll be O.K. when you,ve had a rest : if only more people thats never suffered this life taking away disab understood i,m still battling 30 yrs on .

Sylvia
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Sylvia

Sue 33 and still we battle. Good Luck XXX

Sylvia
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Sylvia

Catherine, the weather thing! We are bound to be better if sun shines! Or it’s Christmas you’re feeling better to see people er no. I like raining days dark and then I can at least open the blinds!

Chris
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Chris

I agree assertive communication is best, always. I came to this illness being fairly straight forward in my communication as well as having a strong sense of self. I do feel, however, that some communication ideally takes several “passes” or different ways of explaining, even repetition for the recipient to understand and or internalize. Not everyone understands right away. So, I guess for me, when I can, I put some energy into the communication. I am blessed with a supportive group, though. I remind myself that if a discussion isn’t going well I can try again when clearer heads prevail.

Terri
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Terri

Dan thank you for sharing your advice and for your encouragement. This is a very complex issue. I find that there are many situations that push me to do things that I know will set me back. Work is an obvious one, and difficult because we are not always allowed the autonomy to make those choices. Another situation which is ever-present in my life is when other people have greater needs in actuality, or are perceived (by themselves or by me) to have greater needs. Also, I appreciate you talking about self-esteem, because the longer I am less – that… Read more »

Christine W
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Christine W

This is very helpful. I think most of us have experienced these difficulties at some time. In my case being mostly housebound without a social life the problems described don’t happen that much. But I have encountered this sort of thing with some medical professionals. Those who are not very knowledgeable about these conditions and think you’re not trying hard enough because you’re not succeeding at the “right” pace. It might be something like physiotherapy/exercise. There is also another side to the problem: someone may have made considerable effort in arranging/catering for an event and by refusing the invitation/food item… Read more »

Tanya
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Tanya

If autoimmune diseases pile on top of CFS, can one heal through this program?

Chris
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Chris

I reached this point when I was still trying to work full time. My boss was discussing the number of absences I had and I just said okay. I had apologized so much before that I had made the decision not to apologize for something I could not control. My boss misinterpreted my lack of apology as depression and became very concerned about my mental state. It took me awhile to convince her I was okay.

Mary Bryan
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Mary Bryan

Very timely Dan. My sister, who cares a great deal about me, doesn’t really believe I have CFS and in turn I question myself. Part of this is magical thinking that if my big sister doesn’t think I have it, then maybe I don’t! Also, as mentioned below, I’m having a very difficult time trying to rehab a shoulder after shoulder replacement. As much as my physical therapist tries, he cannot really believe how exhausting it is for me to do the exercises. I tend to “do as I’m told” and try to do what is asked of me. The… Read more »

Jacquie
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Jacquie

Dan, thanks for this video. I have certainly found myself in this dynamic and as you say at times when engaging with those who are unaware it really does make me feel worse about myself. I am fortunate that those who are very close to me have come to understand with lots of work — I’ve dealt with this over 30 years. I am fortunate to have close friends with whom I share my struggles of not being able to work & trying to figure out how I can contribute, etc. Without having gone through a chronic illness well-meaning, loving… Read more »

Kim
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Kim

Thank you for this timely message! I struggle everyday to get up and function at what I call just the basics of what I have to do! What I find so frustrating is you may go to a family event and while there “function” and everyone sees you for the 3 hours but not the day after or that evening….no cast no crutch no outward sign of the emotional and physical pain that comes with this illness. I can’t even utter the words I’m tired bc of course everyone chimes in you think your tired I have to get up… Read more »

Pamela
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Pamela

I have found that if I go to an event in my wheelchair instead of just finding a place to sit down during the party/ cocktails or whatever it is, people are much more understanding. It’s not that my disability is worse on those days but that if it’s visible it’s not questioned. Surprisingly few people ask me what’s wrong or offer advice if they can see that I have a problem. At first I was reluctant to be seen in public this way but I now realize that it’s actually much easier for everyone!

Kat
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Kat

I agree with this in theory completely. In practice I can get so irritated, upset, angry when people say insensitive things about this subject. I think the sicker I am, the shorter tempered I am. I also reply the things they’ve said in my mind again and again. Wish I didn’t care.

Gareth Morgan
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Gareth Morgan

I really loved that video Dan, thanks a lot for making it.I’m 33 and was about to move into my flat when some of my symptoms seemed to get worse so I’m currently living at home. I have wonderful supportive parents (well I know they’re trying to be supportive) and I really do appreciate how fortunate I am to be able to rely on there care but I do find myself getting frustrated, especially with my dad. He’s a very caring man but kind of old school- this is a fit healthy man in his 70’s who I don’t think… Read more »

Jim Keys
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Jim Keys

I keep trying to join but I can’t quite get through, so this is a test. Anyone there?

Sonia Simpson
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Sonia Simpson

So appropriate as I have a wedding to go to in a weeks time. It’s 400 miles away. I’m only just recovering from my last trip to the same area last Nov after months in bed with a bad flare up. I know I’m not well enough to go. I’m not sure I’m well enough to be left alone ( it’s my husband’s son so he will go) it will cause a really big fall out between us as he struggles to understand and thinks im.beimg negative if I try and explain. You video rang true so much.

Sylvia
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Sylvia

After 33years I know this problem very well! My family always understand. Also I want to be me again and be well. I never give up, so saying I have evil days and am emotional to floods of tears. With other injury and other ops, altogether the mix becomes depression, as pain, emotions are all in the same place in the brain. For me personally I know a lot have the same, I find the poorly flu feeling hardly ever goes away Also the incessant brain fog feels like your going mad!!! Endless symptoms,light sounds smell etc all are at… Read more »

Mary
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Mary

Sometimes it is difficult to know whether people care or just feel M.E. Is psychological and that it really doesn’t exist as a chronic illness

Mary
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Mary

I think we should try not to overthink