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 or whatever you can feel bad for letting them down and hurting their feelings. The nicest thing about this video is the understanding that is shown towards those of us who do struggle with the issue. Many thanks for that.
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 is less than I and/or other think I should be – the more my self-esteem suffers, and my depression increases.
Even if there is no easy answer, it does help to hear someone speaking from a place of knowing, and with compassion and understanding.
Thank you!
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 surgeon doesn’t even try to understand although he assured me he had worked with CFS patients before. I think this video reinforces that I need to listen to what my body is telling me, accept that I have this illness and take the steps to help me recover. I still blame myself somehow for developing this illness although there is no reason to. Many years of therapy tell me that I have extreme difficulty in asking for what I need. Sorry for the babbling but I do appreciate the opportunity to share my thoughts. Thanks Dan.
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 friends say some of the most hurtful things. I am learning that forgiveness is the key, of myself and of them. As I feel hopeful about actually recovering, I feel more secure in the choices I make to support myself & therefore I believe I will be less defensive. When all I was doing was to avoid feeling worse, I wasn’t terribly enthusiastic about the choices either.
In closing, it helps tremendously to know that others go through similar experiences. Thank you for your consistent & thoughtful support.
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 and go to work in 7 hours, etc so I just don’t say it. I was of Director of Health Services for a Continuing Care Community with 85 employees working 24/7 I was good at my job and I loved it…i routinely worked 12 hour days and I kept pushing and pushing til I could no more…it’s been almost 8 years and my self esteem still suffers….getting a Shower is an event that completely drains me of all energy….I don’t know how you get over that..still trying. I was eventually diagnosed with Lyme Disease that I evidently had for a long time…I was treated but the Lyme has impaired my memory and word finding so even to just hold a conversation with someone gives me anxiety. I do have great physicians…not knowing if I will ever get better is daunting. I had to put my nursing license on hold this year after being an RN for 34 years…made me so sad. So when I hear someone. Speak the words running through my head it is comforting to know …I am not alone and that makes a big difference and gives me hope…so thank you! k
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 has ever in his life given so much as a second to consider what he eats or doesn’t eat haha. I’m a week into cutting out dairy, gluten and nightshades and I’ve told him a bunch of times I’m not eating glutten but he’ll constantly ask if I did want to have some toast with my eggs or would I like a doughnut!! This annoys me because at the moment I’m feeling a lot of self pity and envey towards others who aren’t sick and I love food. When I snap I feel bad afterwards. I also feel like they still don’t get how serious this is and although obviously they’re aware to a degree I’m reluctant to spell it out too much for fear of upsetting them ( and myself I guess)Your video made me realise that I need to do what you said and calmly and clearly explain what I’m trying to do.
Cheers
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 times over powering. Blind down curtains closed. Have a blurred eye at present giving migraines en mass,appt for specialist a long way off.I have nothing in me to try my paints ,or just feel like can’t be bothered but I still want to do it, it’s like holding me back. I have tried everything to help. My pain I am managing with CBD. I had 2 days at Boxing Day with family and week before with family. I used to be very fit ,sports etc. Frustrating for it seems a lot were fit before and I was strong and nursing before patient fell on me causing nasty injury back in 1994 .Was retired from nursing and never worked since. I was struggling to work with my M E FIBROMYALGIA ,work and sleep. Back then it was called yuppie flu, that really told people that it’s not a disease!! That still sticks today, hence if we did manage to get to go out,put make up on,so we feel better or Normal:They think we are always good. The out days are few and far between apart from the hospital or a Dr appt. Thing is I see cancer research and adverts for help never do we see a programme of details of the invisible diseases, cancer is also invisible as are many of illnesses. I had a tumour that was missed size of melon. Remove from the bowel bladder and various other things cut into. Thing was oh every one is full of the knowledge that is a so called Real disease and the reaction to that was so so much different. Keep fighting every one.
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 where we live, which means that family events and holidays often include travels and intense family weekends (intense in the sense that we are together with other people all the time and potentially long nights). Today I need to decide if we will go on such a family event or not for the weekend. I KNOW it will be a bad decision for me to go, I will suffer the consequences afterwards when I’m already in a low, and I also know I won’t be able to enjoy it much because in my current condition I can only do a little bit of socialising at a time. Long car travels are also not very nurturing… The problem is that if I don’t go the whole family won’t go (we have three kids all teenagers). The family could of course go without me but that is not an option this time. So this is really a choice of two evils: We can go and I will probably suffer the consequences and also not have a good time while it happens (your first two points), or we don’t go and I feel very bad about myself (your third point) “We can’t go because mum doesn’t feel well….”. I need to emphasize that my family is very supportive. My husband doesn’t want us to go because of this and my kids will say they understand (but I know they are disappointed). I know there’s no answer to this, but I just wanted to share…
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 alone, than it is probably a bit harder and takes a bit mor time, but that will not stop me. 🙂
Wish you all the best, may you all have a lasting recovery and a happy and healthy life.
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?
You’re absolutely right we have to do some time to tell people to stop