3 Problems Chronically Ill people can avoid by STOPPING this
So what are your thoughts about the questions I pose in this video?
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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!
Yes, that the whole issue with the illness still not being understood by people.
Having said that, all those psychological aspects (including the weather) can of course help us to cope and feel better, at least emotionally.
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 .
Sue 33 and still we battle. Good Luck XXX
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!
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.
Hi Chris – think of it this way – if you ‘push’ forwards, then what? Ultimately, you will be able to do less with that strategy and ‘let down’ your loved ones even more. It’s false economy. I think it helps to realise that being ‘selfish’ is actually what is required to feel better and ultimately be more available for loved ones.
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.
Very sound advice.
The point I really wanted to make, is that we need to have a in-depth and assertive ‘serious’ conversation about it, rather than constantly explaining ourselves. In my experience, even repeated communications seem to fall on deaf ears with some people, so raising the stakes and showing that we are serious about this and having a proper conversation really helps to avoid those repeated dialogues where people get ‘nudged’ to do more. 🙂
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 »
You’re welcome Christine.
I think most people with the illness struggle with this and like I said in the video, they think it’s just them.
If autoimmune diseases pile on top of CFS, can one heal through this program?
Hi Tanya,
By ‘this program’, I presume you are talking about ANS REWIRE.
We don’t have specific data to be able to make such claims.
However, I have seen many people recover from autoimmune disease as they have recovered from CFS/Fibro.
What kind of autoimmune disease do you have?
Thank you so much for responding. Hashimoto’s Thyroiditis, Interstitial Cystitis and one to my gastroparietal cells.
The problem is that there isn’t much research into recovery from the illness. In fact, in my experience, the data doesn’t even make it as far as the treating doctor! Most of the people that recover that I have spoken to have never gone back to their doctors – they just ‘disappear off the grid’ so to say.
I asked my doctor if he knew of your program and if he thought it could help me. He said he was aware of it, but didn’t think it would help. I am really hoping to prove him wrong!!!
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 »
Thanks for your comment Terri.
I think recognising these impacts on ourselves takes us one step closer to addressing them and becoming more mindful or our self-talk. 🙂
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.
I can totally see how that would happen – if someone acts ‘indifferent’ like that, it would seem like they are depressed. But of course, it just comes to a point where we surrender to the experience and don’t find it. How insightful – thanks for your comment.
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 »
Hi Mary
Isn’t it odd how these dynamics make us question ourselves. You hear it often enough and start to wonder “maybe I do have it all wrong”.
Sadly doctors are no different, if they haven’t experienced CFS, it’s hard to understand what ‘fatigue’ really means.
Persistence with all these things is key – see if you can learn to do the rehab work in a way that takes less out of you – seek to do the exercises whilst straining less, hopefully that will help.
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 »
Hi Jacqui
You are welcome. 🙂
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 »
Thanks for sharing Kim
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!
Hi Pamela
Totally get where you are coming from.
But of course, the experience also shapes our own perception and our self-identity which makes such choices not always helpful.
It’s one of many frustrating trade-offs. 😐
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.
Yes, that was my experience also.
Frankly, it’s best to distance yourself from people making such comments and ask them to refrain!
Thanks, Dan. Yeh, I think you’re right.
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 »
Great to hear Gareth
Yes, it’s not always easy to show that understand to others – many people like your dad (bless him 🙂 ) just don’t get it.
Sounds like you are handling it really well – good on you!
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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.
Goodness – it’s tough isn’t it!
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 »
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
It drives me crazy when people suggest ME is not real!
I think we should try not to overthink
?
Thank you, Dan, I needed to see this today as I am just about to make a decision about a family event. My problem is however not so much that people around me are nudging me. Either they are supportive (even if they might not fully understand as they have not experienced it themselves) or they don’t say much, which of course leaves you wondering, but I can deal ok with that. But the real problem is when my decision includes the rest of the family, which it often does. Me and husband both have our families far away from… Read more »
Living with chronic illness is a tough gig – other people will probably never understand the suffering and agonising that it brings!
By listening to your self, you are teaching your children the best gift ever; to listen to themselves and do what feels best.
Thats a big Problem for me too. Comments like “just rest an hour before you do sport, will help” or “you just out of condition, start with 5-10 min jogging” that make me crazy. For sure you should look out for yourself, but it can also have a negative side – I’m now alone, there is no one left, cause i avoided all things that damaging me. So there is now the stress of being isolated, not able to work, no friends, practically no family. But for sure I will fight my way back into life and health. If it’s… Read more »
Beautifully said! I so appreciate this message and your delivery. Even after 27 years, it helps to be reminded of these simple but important facts. Thank you for this reminder!
With love and gratitude.
I completely understand what everyone is saying. I’m 82 and started with this ME illness in the hospital at 32 yrs old. I’ve heard it all and finally stopped caring about people and what I go through . It’s the best decision I’ve ever made but it took me years to get here. It’s a VERY complicated illness and even people very close to you don’t educate themselves so it’s a waste of time. Please do what I’ve done, you’ll feel so much better. Good luck 🤩🤩🤩
Thank you for this, Dan. Here’s something that worked for me in a discussion on this topic with a loved one: I appreciate you asking about me, but remember when you had the flu and were in bed for a week? What if I suggested that you could exercise your way to feeling better?