[paul-met-debbie]

Yes, I can surely relate. I was always careful not to be too close to people having a cold or flu. Earlier in my life I felt there was some room left to be negotiated and take some calculated risks. I could survive a cold without too many consequences. Nowadays, I think my lung function does not allow for this anymore and I try my best to avoid infection.

That means, in the holiday season, the four months starting with December, my wife Debbie and I limit our family events to almost zero. No group meetings, no birthday visits if large groups are involved. Only an occasional visit to one family member at a time and only if everyone is healthy and showing no signs of a cold etc. No attending concerts either. And the creativity and awareness workshops we give are paused also.

We use that time as a retreat for ourselves, we read a lot, paint, make and listen to music, brush up on the creativity and inspiration. We love to be at home. And then, in April, we come out of our little den like a couple of bears having finished winter sleep. Actually, it makes for a very enjoyable contrast with the sunny months. We don’t miss these holiday family gatherings too much, there are enough possibilities to stay in contact in a meaningful way and many of these gatherings are pretty superficial anyway (the larger the group, the shallower real contact) with a lot of small talk, stories and mind-stuff in which we are not so much interested anyway. From April to November, we enjoy being together with family and friends again in short and quiet visits, just to see each other and share that aliveness. Pupils attend our workshops also in small groups. If some one has a cold, he/she is not allowed to attend and can catch up on another occasion. If you are clear and consistent about this, no one seems to have any problem at all with it.

But in the end, life is not in the forms, it is not in physical sharing – it’s every where and no where at the same time (“neverywhere”). To be whole and feel together and connected, you don’t need anything phenomenal, it is omni-present without any doing. If anytime, the holidays are perfect for diving into that wisdom deeply.

We wish you a happy and healthy holiday season – and be careful out there!
Paul & Debbie
http://www.parkinsjordaans.nl

[paul-met-debbie]

When my parents were young, they had two children. One of them had cf and died at the age of 7. It is very likely that this death somehow contributed to my parents having two more children later, one of which is me. So, survivors guilt could have been my thing from the very start of my life. Only, it isn’t. Why not?

Because I don’t make up stories like this in my mind. You can live your life in two ways. The first is, living like everything is about you, and then a thing like survivors guilt could very well be constructed. It is the story in your mind that you are alive, and someone else is not, and that these two happening are connected. What is the connection: Your imagination, your thought that they are, that somehow this is about you. Then another story can come in, connected to the first, that you now have to do something (or don’t) to make up for this terrible un-equality that you (imagine you) are connected with. So, the story of the Helper can arise (like it did for Brad). “If I help others, I can pay for the unbearable guilt I feel because I have been favored so much by still living while someone else has died”. This help, however beneficial to those receiving it, and however well meant, basically is not spontaneous, it comes not from the bottom of your heart, but from guilt, from thoughts, from your mind, it is egoic. It creates a prison in which you are the Helper and some else is needed for you to fulfill this ego-role, this other person is the one who needs help (the poor Victim). Now both of you are imprisoned in this dynamic, which at base is purely egoic and not Samaritan.

It is very unselfish of Brad to finally realize that he has to come out of this imprisonment, that he has to free himself and all the ones he caught in his net of Helping too. Life will take care of life. Don’t put yourself in the middle of the universe, it’s an illusion. You can’t save the world. You can only save yourself. That is, heal yourself (from guilt, for instance).

“To make whole, be whole”. John Butler said this, you can look him up
https://spiritualunfoldment.co.uk , he is also on you-tube. A dear old and wise man, who once in his life when he was young also tried to save the world and finally found out that he should first have taken care of his own wholeness. And he worked the rest of his life on this, instead of saving the world.

You can’t go and help people coming from a feeling of guilt, superiority, inferiority, destiny, duty, calling or whatever imagination of your mind. Not even a state of mind where you imagine yourself to be a totally selfless helper of others will do: it will still be about “you, the helper being selfless” – but it will be egoic nevertheless. You can only help from truth, for that you have to be pure of heart and free of mind. To be so, you have to live your life entirely differently: you have to live like nothing is about you. Miraculously, when the ego drops, you will see that life (which Is you) will take very good care of you by itself, without any doing or thinking on your part. And everyone in your life will benefit from this also, without effort. Life takes care of itself. It will be the best sleeping aid you will ever have.

That’s the second way of living. Go for it Brad, it’s never too late to start.

May Grace be with you.

[paul-met-debbie]

Christina, your first reaction was perfectly understandable, your second one perfectly lovable.This all belongs to life.
Bless you and your children.

[paul-met-debbie]

Improving on trikafta and losing your disability would of course be good news if you are young and your energy improves so much that indeed you feel fit and healthy again and are eligible for a new job. This is how I can feel and agree with Christina’s input.

The worries that Jenny and Elisabeth mention, are about a situation in which you are out of the system for a long time, you improve a little or moderately on the drug, enough to risk losing (part of) your disability but not enough to do a full time job or really get access to the system again. In the eyes of the economic world, you will still “have” this disease and are they going to employ you, with your official disease and a “bad” resumé? In most cases in which you are not officially fully disabled and get maximum benefit, the official disability rate will be much lower than your real (earning)capacities so there will be a considerable financial gap for you to bridge some how.

This is a weird situation that could require special considerations by the authorities that handle disabilty benefits.

The question of course being: is this situation “special” enough in the eyes of the authorities for such considerations to be made? There are for instance many people that get fired without blame, have to do on social wellfare or some form of minimal income support for a long time and never get into the system again because suddenly they are too old or have been unemployed for too long.

Perhaps we should look at a more comparable situation that we know about: how are patiënts doing in this regard after a lung transplantation? This could be more or less the same: you are feeling better, but still you will not be “officially” healthy (and have some real health impairments left), you were out of a job for a long time etc. What solutions came out of this situation? Would be nice to hear from these patients about their experiences in re-entering the system and dealing with disability rules.

[paul-met-debbie]

Not standard, but in my opinion important next to antibiotic therapy, is anti-inflammatory treatment. For instance I use every day 2 x 50 milligram Diclofenac, 2.5 milligram prednison and every other day 5 milligram Levocetirizine. Since starting Diclofenac 5 years ago I had no exacerbations, in the years before I had 5 severe exacerbations every year that required iv anitibiotics every time. I had to up my omeprazol to 2x 20 milligram to prevent stomach problems (reflux) after starting Diclofenac. With less inflammation there is much more energy and well being, no more fever and infection is not able to rise above a low level that is manageable with common antibiotics like doxycycline, while before I needed all the heavy stuff and never became stable. Inflammation is what plagues cf patients most, damages the lungs long term and enables infection to gain momentum. If you prevent inflammation, infection will have a much harder time getting to you. Sadly, cf protocol treatment is focussed on infection much more and has a blind spot for inflammation control. Talk to your doctor.

For me inhaled antibiotics did not do much good, but increased inflammation in the end.

For airway clearance (next to light exercise) I use a breathing technique called autogenous drainage. Basically slow and deep belly breathing lying on my back and sides trying not to cough for as long as possible, which slowly transports mucus upwards. I do it while and after nebulizing. It takes time (1.5 hours in the morning,1 hour in the evening) but is very effective and smooth. Horizontal exercise does not have to fight gravity but uses it. Wu wei.

[paul-met-debbie]

Does cf define a person?
It is always better to be grateful for experiences than to resent them, no matter where the experiences seem to originate, i.e. from cf or another source.

1. Nothing defines you
That said, the core of the matter is that nothing that happens can ever define you. Happenings just are. They are the essence of what is called life. Life is what happens. You also happen. Even deep sleep is more the happening of absence, rather than the absence of happening. But that what happens comes and goes, that is the natural order. It is not supposed to get stuck somewhere. The essence of the universe is movement, change. It is you, who make happenings get stuck in yourselves, because you try to own them by either craving for them or rejecting them. And then it “gets to you”.
The process of “defining” by which something that happens “gets to you”, always needs an intermediate. This intermediate is the “I, me, my” structure that exists in most humans. It’s the essence of what is called “the mind” (ego). The process that happens to us after birth (it seems to start at very early age, mostly before our 2nd birthday) is a process of identification. Basically it is the collecting of concepts, a sort of shopping around in the body, mind and world, and everything that is acquired (the body itself, thoughts, convictions, possessions) this way is put in a basket that is called “Me”. It is presented by our culture to the newly born (and later this one does it to itself) as “growing”, getting an identity, as something positive.

But when looked at more clearly, it is not a process of growing but of diminishing. As soon as the young child becomes aware of the feeling “I am”, it means that an illusion of separation is created that puts everything the child was at birth (which is wholeness) outside of it, thus leaving it bereft of all except a hollow shell. And it starts the quest of regaining that what seems to be lost by forming relations with everything that happens that formerly felt to belong effortlessly as wholeness, but now demand action to get in touch with again. Of course, to form a relation with anything will not have the same intimacy as to Be it (like it was when there was still wholeness), so no matter what the individual does in later life, no matter how much he/she acquires (relations, love, possessions, knowledge, standing, “specialness”, influence etcetera), it never fulfills because it doesn’t compare to the natural state. Turning something that effortlessly and perfectly happens to nobody in particular into an “experience that happens to me” is a frustrating business and will never fulfill. You will end up with a basket full of dead stuff, no longer connected to the whole, that becomes heavier and heavier, and it will tell you that this is “what you are”, you will proudly say “this defines me – and that does not, or only partially”. And you will be wrong. Good luck with that.

2. Don’t pick the flowers you already are
This process of conceptualizing and identifying is like picking wild flowers. First you are in a meadow of beautiful wild flowers. You can see them, touch them, smell them. They are for free. They are gorgeous. It’s hard to tell where the flowers begin and you end, and vice versa. You are one with all of them and they are one with you. It is effortless union and complete. Then, your mind comes in. It says: “You know, actually, there is no union, no wholeness. You are something and the flowers are something else, you are separate from them. Don’t you see, here is you and there are the flowers. There is space in between. But I know the solution: just pick as many flowers as you can, put them in your basket. You will feel great. You can have them for you alone. You will aggrandize yourself, you will be `the one with all the flowers’, with the flowers you will be more and different than before and everybody will look at you”. So, out of habit and conditioning you believe and obey this thought and your troubles start. You have to pick the flowers, select the ones you think are best. You have to carry the flowers. Bring them home. Put them in a vase with water. Clean the water every day and still you will see the flowers wither. No longer connected to the whole, they dye. And that, what they represented in you, also dies. Short lived superficial happiness turns into a bad feeling and memory. Without your mind interfering, you could have had eternal joy.
Sadly, the mind pulls this trick not only with flowers, but also with things like disease. It does it with everything that happens. And it will turn it into something much more heavy and problematic than it actually is. But once you get the mind going, it is out of control. As long as you believe in it.

So in essence we are trying to re-define ourselves this way by a constant process of identification, driven by the longing for wholeness that started as we got separated from the whole when we were talked in this feeling of “Me”, that is completely illusory and nurtured by the mind.
And the mind is not picky. It is pointed at filling the basket with no matter what. It can make us feel identified with anything that is experienced. And it can make that a good feeling (“I am clever and beautiful”) or a bad feeling (“I have this deadly disease called cf and I am not attractive”), or something in between (“I have cf but I am not defined by it, it is just a part of who I am”) – it just doesn’t care. It is only collecting stuff to make itself larger. Of course this does not work and essentially, it is an illusion. But for most people, it fills their time and life from the cradle to the grave. It is all in the mind and it is not real.

3. Be Presence
Once we call this scam of the mind for what it is, reality starts to shine again, no longer darkened by concepts like “I, me, mine” and all that got glued to this veil which covered up what was really happening underneath (all the time, without us noticing).
Then there is just “What is”, or Presence. The body is silently ran by the brain (mostly beyond our knowing). All this happens. There is nothing that is not this. Nothing is other. And it is perfect, that is: complete. It is good nor bad. It does not need anything. And we are it. Not personally, not as something, someone or some concept in particular, but as the wholeness it is. You can be everything and nothing simultaneously and be totally free. The mind might be still muttering, but there is no one there to listen.

4. Don’t pick your disease either
How to experience this? By not trying to own anything, not identify with anything. As soon you identify, wholeness is lost. You seem to “have” this one “thing” singled out for you personally, but immediately the rest of wholeness is lost. That’s a real bad deal. Don’t.
“Your” disease is a perfect start for this learning. It seems intimate, about you. But nothing is really about you. It just is. It is what happens in the body. Lots of things happen in the body, but nothing is personal. Start there. Don’t conceptualize. You don’t have cf. Cf is happening. And not even this, cf is an empty concept. Perhaps coughing is happening. Fatigue is happening. Fever is happening. Taking pills and doing exercises is happening, medical treatment is happening. Just like eating, drinking, sleeping, breathing, laughing, talking, enjoying are happening. All these functions are needed for your body to sustain, and they are equal and neutral. But none of them is about you. Don’t combine with it. Then you don’t have to call them good or bad. Everything comes and goes. Don’t make a thought out of it, don’t give it a name, don’t solidify it, because if you do, it sticks to you (it gets stuck in the basket) and you don’t want that. If they seem negative (“I have a bad day”), you suffer. If they seem positive (“I have a good day”), you want to hold on (and you will fail). It is not necessary. It does not make things different. Things are what they are. If you try to own them, you lose out. And remember, it is not really you who do this, it is only the mind which is an illusory function anyway.

Learn to get out of your mind. Lose the basket and walk free.
May grace be with you.

[paul-met-debbie]

As a man not being a father, I am of course not qualified to answer this. But I think this subject is bigger than the word “mom”. Guilt is a universal problem that does not only apply to mothers (with or without cf) and their child. So let me point to a broader answer.

As always, the answer is in the question. We need to not look at what we feel guilty about (could be anything), but to the question: what is guilt? Where does it get its energy from?
Guilt implies, that something is perceived as wrong. We never feel guilty about something good (unless it is too good, but in that case, it is more that we are a bit ashamed of having so much luck, which is different from guilt). Don’t worry about this type of guilt, life will take care of it soon.

So with real guilt, we either think we did something wrong, or should have done something but wrongly did not, or some situation is wrong without our doing but we associate with it.

In case of having cf and feeling guilty, clearly the latter form applies. We feel or think (which is basically the same, they are products of the mind) that something is wrong. “It should not be like this”. This boils down to a lack of faith in the universe. Something is arranged in a certain way (called: this-here-now), and in our finite and arrogant “wisdom” the mind says: I know better, this is wrong.

Now, there are two possible ways of attack. One is to try and reason with the conviction and somehow make it less true. Your list of 3 mitigations belong to this technique (although nr. 3 holds a key to the second way). It is a form of positive thinking, which is more comfortable than negative thinking, but still a way of trying to think your way out of your problem. Now, this will not be successful as you might have noticed already. The mind is clever enough to find other thoughts to sabotage any positive turn you might have thought of. You will never find an answer this way, it will turn out to be a ping-pong game with the mind, your mind will enjoy this enormously and there will be no end to it. It will cost a lot of energy and will go on for the rest of your life. All this energy will not be going to you or your child or to being in general, it will go wasted.

So, the second way is to really take a good look at this conviction and debunk it. Not fight it, not mitigate it, but totally erase the ground under its feet. This requires a change of heart. As long as (secretly or clearly) you think of cf as something wrong, something that should not be like this, that the universe made a terrible mistake with you and now your child is suffering from that, your mind will be able to construct some guilt from this in some situations. And being a parent is an easy terrain of course, because almost no parent feels totally comfortable about how he/she raises the child.

So, this mom-guilt your talking about is always preceded bya personal conviction, that because of cf you are not the perfect mom that your child deserves. That somehow, your child misses out on something or someone better. And that it should have been different. Now, ask yourself (a couple of times if needed): is this true? Is this really true? And with every answer your mind comes up with, ask again: is this true, is this really true? Go on asking until your mind does not come up with anything anymore and has to concede: I don’t know. Mostly, after 3 or 4 rounds of questioning the mind is out of ideas.

Now, only this last answer is really true.
So, as soon as you accept that simply you don’t know and be comfortable with that, you are aligning with life again. Try to have some faith. Not in some particular outcome, but faith in general, faith in life. Don’t look at this situation as a mother-with-cf having a child-that-might-or-might-not-get-the-perfect-upbringing. You are just a mother with your child. You just don’t have that control at all. It has nothing to do with cf. There will be times that miraculously you find the perfect interaction with your child in some situation, and there will be times that no matter what you do or don’t do, things turn out a mess. They might be related with cf or not. But there is no way and need of knowing, and no need of worrying about this in advance or looking back. Enjoy the play, it is not supposed to turn out a certain way, and if it is, you wouldn’t know it.

The only thing you can do, is act out of love for both yourself and child as often as you can. And be comfortable with the truth: you don’t know. Life knows, let it take care of itself. But you know that you love your child, that somehow it was predestined for this child to have you as a mother and for you to have it as your child. How wonderful! Now trust that this is the perfect situation for you and your child, it needs no changing at all, no one is at fault and nothing needs to be improved, mitigated or cured. Who are you to question this, to be at odds with it? So don’t go mess about in your mind with this predestination. Don’t deny life. It was meant to be this way. You have no clue why and what you and the child have to (and will) learn from this. Don’t try and figure out what your journey is all about. Just go along with it. Dance your life, don’t think it. You both will do fine; the universe is great in dancing and you are it.

So anytime your mind comes up with this guilt-trip, question it until it says: I don’t know (for sure). Then (or right away, after a while you don’t need the questioning anymore and the answer will pop up immediately) kindly thank your mind for its suggestion (don’t condemn, it knows not better), and say: Me and my child are the perfect mother-child situation that the universe could come up with for the both of us to experience (see how this is an absolute truth!). I will not question this and I will not tolerate my mind trying to do so without correcting it and bringing it to this truth: Everything is exactly as it should be.

May grace be with you.

[paul-met-debbie]

btw How does it work, planning for a virtual event? I am curious about it!

I was diagnosed at the age of 4, it was 1967 (sweattest) and in that time an earlier reliable diagnosis was not possible, the cf gene was not yet known then; however, cf was already known in my family so the chance of me having cf was 25%. I had no real health issues at that time. After diagnosis I was put on enzyme therapy, which in the sixties was the only specific medication available for cf as far as I know, as well as a low-fat diet which I did not like. How things have changed over the years!

Fortunately, I was never told by my parents about cf until much later in life, so I never got to identify with it. When they finally told me, it felt as if this did not really apply to me personally, so I never believed the statistics etc either.

(slightly sidetracking:) Even at this time in life, when I think of myself, I don’t think about “me” “having” “cf”. For me, it is just about taking the meds, doing the therapies, accepting the limitations and get on with it. I never think that this or that is because of cf. Things just are. It’s not a story in my mind and I hardly think of cf as such (not even when typing these words). We all have to take food and water and air and keep moving, to not feel hungry or thirsty or else die within days or even minutes, humans all are that fragile species. And for me the meds and the therapy are like that, nothing special just actions to maintain my body in the way it wants to be maintained. I never compare and never complain. I comply. I want from life what it is willing to provide, and basically, I don’t mind what happens (but mind you: I DO care, am grateful and love life).

May grace be with you.

[paul-met-debbie]

Pets have been and still are important in my life. I never thought about risks/benefits (I should, but just didn’t). But in general the hairs and skins of pets might trigger some airway inflammation as a risk. And a benefit of having a dog in the house (besides having a noble creature around that thinks of me as God), is that it triggers my walking activities which is good for my lungs.
Cats are also noble, but they think they are God themselves (which is true) and they prefer to go out on their own, so no extra fitness benefits there (unless you chaise them which is silly).

Currently my wife Debbie and I enjoy the divine company of our little labradoodle dog called Buddha. Wouldn’t miss her for the world. She is an Australian Labradoodle, which means that she is anti-allergic (her coat that is), does not loose any hairs and therefore is eligible for 5 professional haircuts per year and sleeping on the bed with us every night (and she makes use of this privilege!).

Having nature in your house, in the form of pets or plants, is a great way of staying close to your source, which is benificial to your health in general. If you take care of the normal and well known rules of hygiene, I think it can go together with cf very well, with some exceptions your doctor can advise you about or experience will teach you. If you can’t have pets or plants, don’t despair – just enjoy the nature in yourself, it’s in every breath you take. And remember: you are a nude ape yourself (be proud of your pedigree!).

May grace be with you.

[paul-met-debbie]

This is what happens in life. It happened to me several times. Until I got the message. It has nothing to do with cf per se. We have identities and believe them into existence. Than life which is ever changing comes along and frustrates us in persuing this identity. We have an identity crisis.

The common mistake we make is that we think that now we have to overcome the crisis. To cure it. To look for another identity. Only to find out that after a while, life again comes along to frustrate this new identity. Or, after a while whe get disenchanted with the identity our selves (is this all there is?).

We should take these identity crises for what they really are: they are pointers. They are not to be solved themselves, we have to transcend them. They point us to a truth: you will never find yourself in any identity or combination of identities. You will only find yourself when you look inside. An identity crisis cannot be cured by fixing or changing the identify, you have to let go of identity (or any identities) all together. That is, outside identity rooted in the world out there. Mind made identities. Conditioned identities. Temporary fixes to the person.

Don’t try to fix your identity. You mind is on the Titanic and you would be doing nothing more than re-arranging the deckchairs. Why not jump ship all together and find out that you don’t need this boat, that you are a perfect natural swimmer? And that swimming is enjoyable without any identity or outer purpose whatsoever. Even without being a swimmer.

So, this question you ask is really important: who am I, without CF? Now, take it a level higher, and transcend your person, your health situation, your conditioning: ask yourself Who am I? Answering this question could be your inner purpose for the rest of your life. The outer purposes will follow naturally, they are only secondary.

In our Western mind-fixated world this question (Who am I – beyond my mind) has not been very popular, although nowadays mindfulness training could be a start to the proces. In other more advanced parts of the world we find Zen, Advaita vedanta etc. There are however many great thinkers/philosophers who have translated this wisdom for us in easy and accessible terms and ways, from Alan Watts to Eckhart Tolle. Dive into that, you won’t be dissappointed. You will discover the lightness of being. It’s about you. Not the person you think you are, but the real you.

May grace be with you.

[paul-met-debbie]

This research of 2019 is no surprise for me. I predict that NLRP3 inhibition will not only help against specific infection with P aeruginosa. It will probably reduce the hyper-reactivity of the immune system in the cf-airways causing the excessive inflammation which lies at the base of every uncontrolable infection in cf, no matter what bacteria causes or florishes because of the inflamation.
Another study in 2016 https://www.nature.com/articles/ncomms12504 titled “Fenamate NSAIDs inhibit the NLP3 inflammasome and protect against Alzheimer’s in rodent models” proved the effectiveness of some kinds of NSAIDs in inhibiting the NLPR3 induced inflammation proces. Specifically, flufenamic acid, meclofenamic acid and mefenamic acid proved effective, while ibuprofen and celecoxib proved not effective.

Now, if one reads this older 2016-study carefully, it shows that another well known NSAID, called Diclofenac, was also effective in inhibiting the NLPR3 inflamasome. Not as effective as the other forementioned three NSAIDs that reduced the Il-1b release by 75%, but still ibuprofen showed a 25% reduction of Il-1b release (Il-1b being the important pro-inflammatory cytokine interleukin that was the subject of the study of 2019 that I am reacting to here).

Why is this no suprise to me? Well, since 5 years I am continuously taking Ibuprofen (50 mg twice a day). It started as a painkiller when I broke two ribs, and I used it for about 3 months. At that time and the three years before that, I was on a heavy schema of 6 IV’s with antibiotics every year (3 weeks each, then 5 weeks of) because of recurrent severe airway infections. To my suprise, after 6 weeks on diclofenac and still with painful ribs, it turned out that there was no exacerbation of my infection. And after 12 weeks I still didnot feel the need for an IV. I started thinking and the only thing that changed, was the diclofenac I took. So, I searched internet and found that there was enough research showing that nsaids (even ibuprofen) had a promising effect on the lungfunction of cf-patients, if administered for a longer period of time. Only these studies had not been followed up in common cf treatment protocol. Doctors were worried about side-effects (although the studies showed none of them) and it was never followed up in large fase 3 studies. Probably because these are very expensive, and there is no money to be made with diclofenac for the big pharma.

Anyway, for me it worked like a charm. Since 5 years now I had no airway exacerbation. I tried Ibuprofen before, it helped reduce symptoms like fever, but it never really had the anti-inflammatory effect that Diclofenac did have. Now these studies mentioned above give some insight in what mechanism might be behind this, and why diclofenac works, and works better than ibuprofen.

Mind you, diclofenac and other more popular current NSAIDs like ibuprofen are not innocent medication either, and generally, doctors tend to shy away from continuous use for long time. But as always, one has to balance the trade-of between effect and side-effects. In my case, being on a pretty hopeless scheme of 6 antibiotic IV’s every year (will the next IV still work?), with serious IC-antibiotics like meropenem and tazocin which also had some bad side-effects like neuropathy, not to mention the risk of increased antibiotic resistance and the practical consequences of living with almost constant IV’s, the trade-of is (so far) very beneficial. I have no side effects from Diclofenac, only I had to increase my Losec intake to protect my stomach from a slight increase in reflux.

This is only my story and experience, I am not advocating anything to anyone and I am no medical doctor. If you want to change medication talk with your doctor first.

But it would be great if new safe anti-inlammatory medication would be made that worked even better than diclofenac, based on one of these fenamate NSAIDs. So far I understand that fenamate NSAIDs are available as drug since 1980, but are not popular because of the gastro-intestinal side-effects it has (such as stomach bleeding).

[paul-met-debbie]

The Philips Innospire Go is my all time nebulizer at the moment, not only for travelling but I do all my treatment with it. It’s a great little thing and it delivers!
Only thing to be careful about it to never boil it in anything but demineralized water, because it can’t stand any deposits that are in normal tab water. (in the Netherlands, our tab water is so good that we can drink it and it’s in fact better than bottled water. But still there is some calcification going on if you boil it).
I have one Innospire from my insurance, but I have bought a second one myself for spare. The complete package is 185 euro at http://www.philips.nl, but the mouthpiece with the mesh can also be ordered separately for 78 euro. The mouthpiece will last about 1 year of use, the batterypack should last longer.

[paul-met-debbie]

Mary and The Lady (or are they?)

These situations unfortunately happen, and I am sure all of us, with or without a disease, had to deal with it once or more often in our lives. They are great lessons for us to improve on ourselves, and to check on the progress we have made so far in being true. Trust me, life is not about being healthy or unhealthy. It is about discovering our true being. But an illness could be very helpful in this, because it tends to amplify everything, so it can be seen more clearly (if we want).

I will not defend the ladies reaction because it is very un-loving and discompassionate, but I do want to point out some things and mechanisms that perhaps can help us look at situations like this from a more distant, more clear and true, perspective. The main question being: who is making the rude remark and who is reacting to this? You would probably say: the lady and Hannah, but you would be mostly wrong. Let me explain. But I want this answer not to be about Hannah personally, because firstly it has nothing to do with who Hannah really is, and secondly because her reaction is very common, and all of us could have reacted this way. So I changed her persona into Mary. Let us say it all happened to Mary. Hence, Mary and The Lady.

First of all, what comes to mind regarding the ladies reaction is: “Forgive her, because she does not know what she is doing”. A familiar phrase perhaps, but often forgotten. Obviously, the lady is ignorant and unaware, she is reacting from fear which comes from the ego instead of from love. With ego I mean our conditioned mind that has some illusionary and false image of who we are. Being taking over by her ego, she is to be forgiven, because it is not her own self reacting. You can’t expect anyone to behave more wisely than their own level of awareness allows them. And the general level of awareness and compassion leaves a lot to be wanted. We should not misinterpret her reaction ourselves either, looking at her “smirk” or hearing her “jokingly” tone of voice (if these are true observations to begin with – or are they also colored by Mary’s own ego?). I bet the lady is not amused, she is not trying to be funny, she is only afraid of contracting a disease and she does not know (has not learned) how to manage that. Hence her awkward reaction. That may be an overreaction of fear, but nevertheless we can understand the mechanism better this way and with more compassion. Disqualifying her and saying that she does not belong to the group of “good people” like Mary does, is equally unaware and ignorant. You can’t and should not fight the dark with the dark. Try to shine your light at it. And look at ourselves: I must admit, even more so when I am in a hospital, people in my vicinity coughing and sneezing do not contribute to my feeling of safety, to say the least. Most airway infections are indeed spread by coughs and sneezes, that is a well-known fact, and even a mask will not give 100% protection. So, if you are afraid of contracting a disease this way, a reaction of fear is not totally incomprehensible. That does not excuse the lady from uttering this fear in such a blunt manner of course, but still, there is some validity to her feeling (not to her behavior). And it does not make her “no good”. If she had been more aware of her own reaction, she had recognized it to be a bit over the top and perhaps she could have acted more graciously. If she was totally aware, probably the reaction would not have come up at all. But she was not aware and she can’t help that, our society and upbringing are not interested in awareness in general, they tend to emphasize the contrary mechanisms of ego, individualism and separation. So be it, but we can start to improve on this with ourselves instead of pointing to others. Don’t blame her, you can’t control her reaction, but you can work on your own reaction. So let’s look at Mary’s (excuse me, her ego’s) reaction next.

Secondly, you are never upset because of the reason you think you are. This is not about this ladies remark, it is about Mary’s own (perception of) misery. If she had been in the power of her own self, the ladies remark could not have hurt her at all. But instead, she was lost in the story of her mind (ego) herself, like most of us are most of the time. She tells it beautifully and lively, all the circumstances leading up to the moment of her disgust. We can really get into it. Being left alone by her boyfriend at the admissions desk, having muscle aches, feeling weak, having to move her wheelchair with her hands by the filthy wheels, feeling misjudged by the nurse (at first, after that it changed in a feeling of pride – both feelings being not to the point and ego-produced), feeling sorry for herself having a dramatic (in her description) coughing fit, her sickness, the shortness of breath. These circumstances (and probably a life full of them before these, so much that she was even used to it) in her mind all led up to The Moment, and her ego had a ball with it. The moment of the lady. Entering Mary’s field of view (accompanied by her husband, to add insult to injury …). Now Mary’s ego used all this fuel to ignite it at once when the lady made her rude remark. And it made her cry. And she felt attacked personally. That is, her own ego felt that way. How dare she!, says Mary. Joking (was she, really?) at my genetic disease (really? She couldn’t be, because she does know Mary has cf) that is going to kill me (how does Mary know how and why her bodily life will end? She might be ran over by a bus or die from another disease altogether and besides, how is this important regarding the ladies remark?). Mary goes on: How dare she fake a fear for her own life (how does Mary know it was fake? – and is Mary the only one who gets to be fearful of dying because she has this disease? Fear of death is really common, you know). Now Mary’s ego really was on a roll, making up a story that the lady did this despite of her being ill for a week, being only 22, coughing up blood in a certain amount etc. etc. (no, the lady does not know about this, so her remark could not be despite of it all – it was just a rude remark because she did nòt know anything of this). So Mary’s ego is (un)happily phantasizing along, making up a great story to make this insignificant circumstance into the ultimate drama it wants it to be. Ego’s do that, it makes them feel alive. Something really happened today, to me! And then Mary’s mind and body identify with it, believes the story of the ego and Mary believes it is about her and decides: I will tell you about it. That will make mè feel alive. The reality is: you suffer from it, but the ego doesn`t care about you. It feeds on you believing it.

Now, don’t get me wrong: I am not criticizing Mary, only describing her ego, the reaction of her mind (that has a totally wrong idea of the loving and gracious being she really is underneath). There is nothing wrong with Mary, but she is as much a victim of identification with the story of her mind, the conditioning, the twisted perspectives, the untrue-ness as, the lady is. This is not an encounter of rudeness vs vulnerability, of Mary and the lady, of her and the nurse being “good people” and the lady being “no good”; no, this is a clash of two misdirected and uncontrolled ego’s that make the moment and the simple situation into a miserable hell of misunderstanding. So these are two untrue stories being told. The story about the lady who is unforgivably rude and not a good person, intentionally trying to hurt Mary and her illness, and the story of good innocent Mary reacting to this, turning her into a poor victim that we all should feel very sorry for. We should not believe either of these stories.

Neither of these reactions are going to help, or make anyone happy. It is our own task in life to discover this mechanism of our ego working, to overcome it, learn to ignore it, try to really get into our selves deep enough to find another way of living and reacting, which is mostly non-reacting, coming from love and being at peace with ourselves and seeing the circumstances for what they are, not being disturbed by them. We will be so much happier for it if we do. Wars will end, the little ones and the big ones. We will even forget our own bodily diseases and feel healthy and happy, which is our true nature after all.

Forgive him/her/me, because I /he/she do(es) not know what I /he/she am (is) doing. Now try to work on this, try to be the being that does know what he/she is doing. The world will be a so much better place for it. Our own little worlds and the big world they compose. Never mind the circumstances, the behavior of others: you are the only one that counts in this world. If you are at peace with yourself, nothing can hurt you or provoke an unaware reaction. Or to quote John Butler: To Make whole, Be whole.
May grace be with you and with your next reaction – and if it turns out to be personal: learn from it. Life will give you a second chance.

[paul-met-debbie]

If there is pain, there are four options. One could (1) accept the pain and make it an integral part of the experience of life, and that will basically end it as a separate thing. The pain would still be there technically, but there would not be any individual entity (ego) to take ownership and say: “Ouch, that’s my pain”. This requires a process of de-identification with life’s phenomena in general and could take some practice and perseverence, sometimes for several years. One could (2) resist the pain, and that causes suffering. This is generally what most people (unconsciously) do, because whe are taught that way (“you have to fight, don’t give up!”). Walking away (3) from pain usually is not an option, because it is linked to our body and goes wherever we go (option 1 could be seen as sort of a higher form of walking away).

The fourth option is dealing with it, in the sense of trying to get rid of it (as much as possible). If we do this from resistance, this will only give unsatisfying results. So the first option (acceptance in some form or degree we are able to) is always the best start anyway. From acceptance we mostly are much more succesful in dealing with it and finding solutions.

Where does talking about pain come into this? One could talk about pain, but this in itself will not solve anything unless we talk about it at the right time at the right place, and nowhere else. That is, at your doctor’s office. Talking in itself does not solve anything, it tends to increase the attention and the suffering, but when it comes from acceptation (1) and is pointed at a solution, it might be helpful. Your doctor knows more (sometimes) so his/her input might lead to a solution that you have not thought of yourself. Sometimes talking about it to other patients could have the same intention and effect, but indeed one can or want not do this too often at the risk of being viewed as a whiner (by others or, worse, by oneself – don’t be too worried about how others see you).

I am a bit confused when I hear Elisabeth say that on the one hand she does not want to experience the pain but still she refuses to take medication that could help (especially pain medication). This is not a very helpful attitude, since it is a combination of non-acceptance and non-dealing, which leads to great suffering, but I suspect it comes from experience of taking medication that either does not help very much or has unwanted side-effects, or both. I would expect her to gladly take any medication that would help her deal with the pain if the side effects would be minimal or acceptable. Sadly, medication like that is not easy to find and it is a good thing to point this out to our doctors and caregivers so that something can be done about it. On the other hand, chronic joint pain/arthritis is not an exclusive cf-symptom (so I would not call it “CF-pain”) and there is much research going on in that area already so don’t give up hope.

As Elisabeth points out, over-the-counter anti-inflammatories help but her experience is they only help for a short time and not completely remove the pain. I am not a doctor so I can only offer my own experience as a patient, which is only relatively important because I am not you and my pain is not like yours. But I will share it anyway because it is spectacular and it came from grace, not from talking or from my doctors.

I used to suffer from (not severe but still annoying) joint pains until I was so lucky (!, yes indeed) to fracture two ribs after a fall. I got painkillers, heavy ones that made me drowsy and I got rid of those as soon as possible, but also “light” ones, one of which was diclofenac which I took for several weeks, long enough to notice a big change and had not expected. Now, diclofenac is a painkiller but also a strong anti-infammatory that is used for joint pains since time immemorial and it works longer (mostly up to 12 hours) than other nsaids like ibuprofen (that last only for 4-6 hours). So, it’s easy to dose with only 2 (or max 3) gifts per 24 hours. In my case, I have not suffered from joint pain since I started to use it. I must admit that at that time I would not have not continued the medication only for the joint pains (I could live with), but I did because it also effectively reduced my airway inflammation so drastically that I did not need any IV – antibiotics since either (I had 5 IV’s per year before that) and can now suffise with oral sustaining antibiotics. Now, this is only my case and I am not advocating anything to anyone. I only tell this to explain why I stayed on the diclofenac (twice daily 50 mg) since. It’s been more than 5 years now, I had no side effects from it, no joint pains anymore and it also calmed down my airway inflammation to the lowest level I ever experienced in my life (just turned 56). For me, the latter is the main reason to continuously use diclofenac, but I could imagine for heavy joint pains alone I would do the same.

My doctors would never have come up with this solution, and they were as surprised with it as I am. So this shows that even talking about your complaints with your doctor is not always a solution, one needs the grace of the universe too, even if it comes in the form of breaking 2 ribs. But hey, who would complain?

May grace be with you!

[paul-met-debbie]

Let me ask the question more fundamentally: who thinks and talks about purpose in the first place? Where does this voice originate? Is it natural to us? Probably not.

Given that we are part of nature like all other life forms, animal or vegetation, we fundamentally are the same. On a being level that is. Now, on that fundamental level the question of purpose does not play at all. The flower or the animal does not torment itself with this. It just is. It lives. It is just “animalling” or “flowering” away to the best of its natural abilities and it does a wonderful job. It’s just there to be what it is. It lives because it is its turn to live in that form for the time. It does not have to look for a purpose. It is its own purpose already just by being There like nature wanted it so. If even a creature like a chimpansee who is genetically almost identical to us can live his life this way, why can’t we?

Because we unfortunately learned to think our live in stead of living it. We are not only a being (we tell ourselves), we are a human being. And we want so desperately be different than all other manifestations of nature, that we focus on the human part obsessively and our being part gets molded over by the result of this incessant thinking habit until we can’t feel it anymore. Our ego runs the show. It only gets us into trouble and our planet as well. We separated ourselves from nature and this separation makes us unhappy and deserted. We try to compensate by collecting knowledge, things, money, power, status, relations and identify with them. We call this “the persuit of happiness” and tell ourselves that we are entitled to it. But in the end, it doesn’t help. We stay lost. Life becomes a strugle and a journey where we constantly have to find our way, in stead of a dance that we can enjoy intuitively.

There is nothing wrong with happiness, but to look for it in the outside world is a devil’s job.
The happiness is inside. We are born with is. It’s our innate state of being. If we don’t think it away by identifying with our thoughts (which are in fact not ours, but our ego makes us believe that), we could have it al the time. Than it turns into Joy. The Joy of being, which has no opposite like happiness is always opposite to sadness. We don’t have to look for it as a purpose, we are it. St. Francis of Assisi worded it perfectly when he said: “What your are looking for, is where you are looking from”. Turn inside and let life live itself from there. The outside world is just the playing grond, the dance hall. Don’t take it too seriously.

So to answer the question: I don’t think about purpose, I know I am fulfilling my very essence just by being what nature intended me to be: alive. For the time that is given to me and beyond. I cannot be not alive ever, I am part of a constant proces of in-formation, of getting in and out some form of manifestation, of experiencing what ever comes my way and reporting that back to nature, so that nature can be aware of itself. In that proces, I am constantly closing the circle of manifestation and I am That.

How could your little human mind ever improve on or ad to that? Don’t worry, it has been taken care of already.

So, Elly is right when she intuitively concludes: I know it’s something good. It’s even better than she perhaps realizes. But that is a good start.

[paul-met-debbie]

I can recognize this feeling of “not having done anything (or enough) today”. I learned to get rid of it after I stopped working as a teacher and had the luxury of spending my time freely. That is, after I got rid of the ego-game. The ego loves accomplishments and tries to push us to doing, achieving, trying etc. When the body does not allow for this due to a (temporary or constant) lack of available energy, the ego does not forgive and let us of the hook. In stead, it starts generating thoughts of incompetence that indicate that this day was of loss of time etc and that we are to blame for it.

In this game, we can never win. It is important to realize this. For the ego, it will never be enough, at least, not for long. Even after a great achievement it will take the ego only a day or so to start nagging us again. What to do about it?
We have to acknowledge this dynamics first. Then, we should resist bargaining with the ego about it. This will only confirm the process that we want to get rid of. We can’t fight the ego, it will only draw strength from it because it will feel taken seriously by us. Don’t do that. In stead, we should take a step back from our position of engagement and take a position of observing. Realize that we and the ego (the fictitious image our mind makes of us and tries to sell us as being authentic) are not the same. That, in fact, this ego is an illusion that we can do without. It’s a crippled version of ourself. We need not believe it’s thoughts, we have the option to ignore.

Then we can realize that we don’t have to engage in this play of the ego. We don’t have to combine with it. We have been brought up in a conditioning that the ego is right, that we have to make something and someone out of us, that we should be doing and accomplishing all kinds of things to be a valued member of our society, of our species. But this upbringing, this conditioning, is wrong and unnatural. It is a misunderstanding of who we really are. In fact, we don’t need to do anything in order to reach some level of usefulness. We just have to be ourselves. It has nothing to do with what society or other outside influences expect us to become or accomplish. We only have to answer to our natural self.

That does not mean that we have to be inactive. But it means, that we can play around with live like it was a dance, in stead of a journey. A dance is about joy, about being in the movement, we do it because it’s fun, it comes natural. It is not about reaching a certain level or place that is expected of us. Sure, there are tasks to complete and work to be done, but don’t take that for who you are. Don’t let it determine how you feel about yourself. Just stay in the self as the self.

So, I agree with Tré: if nature gives, a day (or even 4) of lying on the bed is OK. Not because it is worth something though, worth does not come into it, but just because it is OK. This is the form in which reality presents itself to you at this moment. Nothing wrong with it. It is the way how you spent your day (for whatever reason, that does not matter – only to the ego but hey, don’t combine with that!). It is just what happens that day. Don’t give it a thought. If you have been your natural self that day, being in the moment and accepting everything that has been presented to you, it is OK.

Now, ask yourself this question: how can you not be your natural self? This was how you were born (or even before that). Strip away all the conditioning, ignore the silly games of the ego, and be what remains. Just be here now. Live your live from that “state”, never forget what you really are and don’t get distracted. It has nothing to do with your body, your occupation, your relations, your thoughts or believes, your expectations, imaginations etc. Don’t think your live, dance your life that way and you will be OK. Always. And don’t let anyone tell you differently. Chances are they are taken over by their ego and don’t even know it.

[paul-met-debbie]

I hate to work out, so I don’t. I think it’s unnatural, I don’t practise things that I don’t need. I don’t need to be able to row for half an hour, because I don’t live on an
island, so I don’t practise this on a fitness rowing machine. I don’t run for 5 miles, because I never need that. I can walk for five miles if I want, and i have a car when I need to go fast.
I do want to be able to play the piano for 2 hours every day, so I practise that. Not on a fitness piano machine, but on an actual piano. It’s a lot of fun. I also need to be able to walk our dog several times a day for half an hour each time. So I do, with the actual dog. She has a lot of fun too. And so I also walk the stairs of our appartement building as often as I need to get down and up again. There is an elevator, but I don’t use that, unless I have to carry heavy stuff.
I keep moving around acccording to my natural needs and abilities. I find it’s easy to keep this up, because it fits my natural healthy routine and my normal needs. My body seems to fair well by this. When I overdo it, it protests. And I learn from that. By taking a break and not overdoing it again. I have a wise body. It won’t run a marathon, but that’s okay – I would never ask for that. When I am not feeling well, I adapt my activities to that. It will clear up again and than I resume my normal routine.

[paul-met-debbie]

Yes I agree with you fully Luisa, kindness and respect are important.
But we should always realize that it becomes much easier to relate to other people if we in the first place know who we really are. Then we can make contact on a different level that is not dependent on formalities like language. To feel (dis)respect(ed) in the end is just a game of the mind/ego, who wants to feel good or bad about it’s imaginary image of itself (which it imposes on our real self – or the soul if you want). It is always in our own power to realize that words, (verbalised) identifications are not about who we really are. We can let the mind play it’s game and make a lot of trouble of those concepts, or we can go right through it to the core of the matter: if the intention is right and based upon love and real knowing, and people want to meet eachother on the deeper level, words/phrasing do not matter. We should reach out beyond formalities like language and concepts of the mind. All identifications are in fact barriers between us and reality. Of course it is more comfortable to feel proud than to be ashamed about our person or (dis)abilities, but in the end, pride is a prison as well, constructed by the ego as a way of dealing with itself on a superficial level. If we go beyond, this all becomes trivial and looses it’s importance altogether.

[paul-met-debbie]

I think there is too much emphasis on the subject to start with.

Why would anyone want to be identified with a bodily function-disorder like that? Why would you want to be adressed at all in that way? And if you do, why do you care about the specific terms used in that process?
If you really care about being referred to as cf-er, cf patient, person with cf, and also care about the difference between those terms, chances are that you are thinking too much about it.

If you let your life to be affected (or think it is affected) by the way people are talking about you, you have a severe problem of being overly selfconscious bordering on the paranoide. Your ego has run away with you and you don’t know it.

Do you really want to (care about) tell(ing) others how you want to be identified? This has nothing to do with either autonomy or authority. Real autonomy and authority would mean that you are absolutely indifferent to how other people refer to you as a member of some (illusonary) group like “people with cf”. You could not be bothered less because you are living your own life from within your own strength. You would probably not even feel identified yourself as cf-related. You are just who you are.

If the way other people refer to you or “your group” makes you feel inferior or inadequate, while the terms they use are in fact neutral and to the point in the context that they are talking in, then who is having or making the problem other than you, by taking something personal beyond all need?

Really I would think that there are much more important things to care, think or talk about than this. Little things like joy, love, compassion, truth. You have been given the gift of life for free, didn’t you? Now, use it and don’t waste your time thinking about language, identities, how you want other people to talk about you and other nonsense like this.

Paul

[paul-met-debbie]

Well, let’s lift this beyond the cf world. How do you react when someone you know (a fellow human being) dies before you do? Should you be feeling guilty? Why? Is this any different from a fellow cf patiënt dying? Really?

In my opinion, this has nothing to do with cf at all. To parafrase a well known latin proverb: “hodie tibi, cras mihi”. Guilt is not the appropriate feeling. Sadness, mourning, yes. But guilt? No. The dying of the other person has nothing to do with you. Don’t try to own it by feeling guilty, it’s an act of egoism.

A little joke goes like this: two old men are sitting on a bench near the village church as a funeral procession goes by. One man says to the other: “That’s John, he died last week. You were his best friend. Shouldn’t you be at his funeral in stead of sitting here with me?” Whereupon the other replies: “No. He is not coming to my funeral either, is he?”

While this is funny because it is a overly blunt reaction, I think in the core it’s much healthier than feeling guilty about someones early demise.

Paul

[paul-met-debbie]

LOL, I had to look up the term PFT to find out that it means lungfunction test.

Anyway, I did those in the past until I found out that the only thing they do with it, is file it. I have never seen any medical action (treatment, diagnosis, medication) to result from (only) a PFT. It just shows a gradual decline in longfunction over time, something that I can tell myself very well without doing the test and is to be expected, hey you don’t have cf for nothing now, do you?

My longfunction declined in my life from around 65% FEV1 when I was 25 to 31% now (will turn 56 this month).
So, on average, it went down 1% per year, which is not bad. Last 3 years it is stable however, since I use twice daily diclofenac (50 mg) to inhibit the inflammation. Since that, I have no exacerbations anymore and only use some doxycycline daily to keep the infection down. Before that, I used tons of antibiotic pills of all kinds (until nothing worked anymore) and in the three years before I started diclofenac I had 6 intravenous treatments every year! Doctors were totally speechless but in fact, had they done their research, they could have known that continually treating cf patients with nsaids (mostly ibuprofen, but I found out that diclofenac is better) had been tried before with good outcome, but only in local cf centres and it never became protocol for some reason. Ask your doctor about this! But I digress. Back to PFT.

My anxiety about PFT is that I don’t trust those machines to be absolutely clean. Mostly they schedule cf patients at the end of the day, so they can clean the thing afterwards. Made me think what germs could be spread in my lungs from all the patients that went on the machine that day before me. Tests have shown that the bacterial filters they use are not waterproof, they could even cultivate germs on the other side of the filter. And other desinfection protocols (alcohol etc) could not garantee sterilisation either in all cases. (I researched this several years ago). So, I made the decision to not go on a hospital pft machine anymore.

I now own a little device on which I can blow a FEV1 score at home myself.
I bought it right after I did my last hospital pft and tested it the same day at home, to calibrate it to get the exact same result as in the hospital.
Since then, I measure my pft (FEV1, which is the most important value anyway) at home, not more than 4 times a year, in my own privacy, on a device that is clean (or at least only harbors my own pet-germs).

Well, that’s all I have to say about PFT, hope it helps.

Bless you all.

Paul

[paul-met-debbie]

I wish they would not (mis) use animals testing and developing medication.

[paul-met-debbie]

It is all a matter of your own perception. It is good that Elisabeth talks of pity on the one hand, and compassion on the other. They are completely different. You can accept compassion with grace, and you can ignore pity.
But the main thing is to be relaxed about your own situation, then you won’t mind (or even notice) the reaction of others to it. Let people have their own reaction, you don’t have to pick it up. There is no shame nor any other problem in wearing a picline if you need one, so why would you allow your mind to add this? Don’t pick up their problems with your pickline. If you fully accept your situation, there is nothing wrong with it anymore and it will show in the way you behave. If this is natural for you, it will feel natural for them too.

[paul-met-debbie]

Your body does not betray you in de the morning, you have betrayed your body the evening before by pulling a late night. Just accept the boundaries your body sets, it knows better than you. There is no problem in that, so no compensation or strategy is needed other than being aware of your bodily needs.