fragmented.ME …
mind * body * soul ...

mindfulness for ME …

How many times have you said this to yourself …

I need to start listening to what my body is telling me …

I have said this a thousand times, as I am sure you have too.

In other words, what I actually mean when I say it is that I need to be more mindful of how my body is actually feeling, at any given moment, in order to behave accordingly and appropriately and not make myself any sicker. I have a terrible habit of triggering adrenaline (see Jodi Bassett post adrenaline & ME …) in order to be able to do something or to be able push through to the end of doing some thing. Being like this always leaves me sicker in the immediate short-term, and in the long-term I never recover to my pre adrenaline triggered episode level of sickness. I am always worse. Part of me wants to refer to this ‘sickness’ aspect as ‘health’, instead of sickness, but it has been so been many years since I felt like I had any level of health and so I feel that sickness is the most appropriate and correct term to use … (I’m not being negative friends, I’m being realistic).

That said, being mindfully aware of how you’re feeling or thinking, in any given moment, is actually much easier said than done for most people. Particularly so when you’re long-term chronically sick and have trained yourself to ignore your symptoms so that you aren’t always thinking about how sick you are and possibly so that you can carry on with chores even though you feel sick. And, even more so, when you have other drivers pushing you to carry on. These drivers may be yourself, your upbringing, significant others, guilt. In fact, they can be anything that makes you carry on or do something when you are internally screaming . . .

N O O O O O O O !    S T O P . . .

Whatever these drivers are, once you have triggered the adrenaline needed, there is no stopping you. And often, in that moment, even though you may be sweating, shaking (externally as well as internally), breathless and feeling utterly dreadful, like you might even die any minute, psychologically it doesn’t half feel good to be able to achieve. Just this once (is what I always tell myself), I won’t do this again because I know I am causing myself harm. But of course I do, I do it all the time in order to do anything, it’s how I seem to live …

But, the aftermath is miserable.

Post Exertional Malaise (PEM) payback is the biggest bitch ever …

and the adrenaline come down can take days or weeks of feeling like you’ve drunk too much coffee and just can’t get it out of your system …

So we can ask ourselves, is there a way, for us with ME, to be more mindful of this? And how can we implement being more mindful into our own patterns? And, on a personal level, and more importantly, how can I implement mindfulness inclinations and behaviours soon enough so I don’t keep making pushing on and making myself sicker?

With these questions in mind this blog post will look at mindfulness around three areas.

  • Can I be more mindful about what I can and can’t do?
  • How can I implement what I’ve discovered?
  • And how can implement it soon enough?

Can I be more mindful about what I can and can’t do?

Mindfulness is about being aware of what you are experiencing in the moment, both physically (such as breathing) and mentally (such as emotion) and observing such with an openness and kind and easy acceptance.

Being mindful is not some super fix or cure all but it is a much healthier way to deal with our experiences. Being sick all the time can leave us with negative thoughts about our lot in life and being sick and in pain can really make us question if we want to carry on living.

Thoughts stimulated from our experiences, can be positive or negative and will create a biochemical state in our body that can be either MORE beneficial or MORE harmful to our already unhealthy biochemical and biophysical state. With this in mind, although being mindful won’t cure us, it will make our biochemical and biophysical state a better one than the alternative, which long term will have outcomes that will make our chronically sick life more tolerable.

In Practice

In practice being mindful might look like this (this is just one example and you can exchange the details for any situation you find yourself in):

You’ve woken up, in considerable pain again, and you have things that need doing as well as things you would like to do; it’s been over a week since your last bath, you can’t remember the last time you washed your hair, and you know you smell, even though ‘others’ say you don’t smell …

And so when you open your eyes from sleep and are bombarded with so much pain that you have no idea where hurts most, and on top of that the exhaustion is crippling; you just cannot find the energy needed to simply cope …

all of this and you’ve literally just woken up from sleep …

There are quite a few things you could do. However, I want to concentrate on just two scenarios that you have available, which would actually cover most options anyway. One will be a negative scenario or reaction and the other will be a more positive scenario or reaction, (you can change the finer details to fit your situation but I’m sure you will be able to relate to both scenarios) … The idea is that we recognise that we have choices in how we react. We are not denying our situation, because that would be unrealistic and is what I call toxic positivity (I think I can feel another post idea in this emotive subject matter), we are simply choosing to see our situation in a way that creates a better internal environment for our already sick body to live in.

scenario negative …

YOU CAN:

Flop back down and think desperately: oh no, not again, I absolutely hate my life, I can’t do anything, and the pain is f**king unbearable, my body is useless and BLAH BLAH BLAH … (I’m sure you know the rest very well) … I cannot do this any longer …

You then proceed to get up, get on with your day, huffing and puffing and moaning and groaning, triggering the adrenaline in order to get on and get through, knowing full well there is absolutely no way you should be doing this nor are you capable of doing this.

You are now making your internal environment much poorer biochemically and biophysically.

You are making yourself sicker …

O R . . .

scenario positive …

YOU CAN:

Open your eyes and breathe softly and easy, while you scan your body with a loving gentle kindness, noticing where it hurts and how you feel about waking up like this for how ever long it’s been going on (no judgement allowed, just soft easy acceptance).

You can then show yourself some compassion, the way you would treat a delicate loved one who is extremely sick, take some pain medication if you need or take them, and lay down and breathe, or even go on a beautiful imaginary journey, while the medications or the meditations, or even both, begin to work …

You are now making your internal environment much better biochemically and biophysically.</>

You are not making yourself sicker …

The thing is, neither of these scenarios will cure you but both will have an impact on and change your biochemical and biophysical state. The most wonderful part in this is that you get to choose which it will be.

There are so many pieces of research that show we have the abilty to change our internal state, just by our thoughts. [sg_popup id=”2374″ event=”click”] The Biochemistry of Belief [/sg_popup] is one piece of research that clearly shows the chemicals from different thought or belief states will alter the whole internal environment within your body. Meaning that in our examples, scenario positive will produce chemicals that are more prone to healing, calmness and peace, whereas, the chemicals from scenario negative will be stress-based and more harmful and unfriendly kind of chemicals.

Powerful knowledge to have in the palm of your hand. This works for everybody, regardless of how severe you are. Because even if you are mildly or moderately affected by ME and still have to get up and do the chores on your list, you will, if you do it, and can, when you do it, have made the environment inside your body a much healthier one to do anything from, causing less damage to an already sick body. And if you’re severely affected by ME, then it’s highly likely you will not go on to push yourself in order to do anything out of your sickness ability level because the biochemical and biophysical environment you have created will now be giving biofeedback that is calm peaceful and accepting of where you are at.

powerful knowledge indeed …

U S E   I T   . . .

How can I implement what I’ve discovered?

So the big question from all of the above so far is, how can I implement what I’ve discovered? Put simply, scenario negatives will need to be replaced with with scenario positives, and to do this you will need to become mindful of when you are running scenario negative narratives in order to be able to replace them with scenario positive narratives. You may think to yourself, ‘this really doesn’t apply to me, I don’t run negative or positive narratives, I simply just be’. However, our minds are designed to think and if you pay attention, be mindful, you will notice most of the time you are running some kind of narrative story in your mind.

This is where the implementation of mindfulness is necessary, in order to become aware of scenario negatives and exchange them with scenario positives. This sounds easy enough in theory. Yet, in practice it is one of the most difficult things to do. Especially when you are in pain and suffering and your automatic reaction is to, understandably, get upset, disgruntled and stressed. Stress, in any form, will often subconsciously revert us back to universally automatic, ingrained or even upbringing programmed, ways of being. Which in turn means that your biochemical and biophysical state keeps reverting back too …. over and over. And if everyday you are faced with the same stuff, be it ‘to do lists’, ‘sickness & pain’, or otherwise, it’s like ‘50 first dates’ or ‘groundhog day’ each time we open our eyes. To combat this on a daily basis is rock hard. But you can do it.

R E M E M B E R

any scenario, positive or negative, real or imagined, has an impact on your biochemical and biophysical internal environment …

YOU HAVE A CHOICE

s o   w h y   n o t   c h o o s e   t h e   o n e
t h a t   w i l l   b e    m o r e   p o s i t i v e   f o r   y o u
A N D
m a k e   y o u r   i n t e r n a l   e n v i r o n m e n t   b e t t e r  . . .

The Hows

A search online will reveal to us that there are many ways to tackle this. But an article I found on Tiny Buddha was straight forward enough for me to simplify, implement and then regurgitate in my own words below.

Automatic behaviours or patterns, ways of responding and doing, or even being, are such because they have been written into our subconscious, often from childhood, as previously noted. So in order to re-write those we will need to write into our subconscious. And in order to write to the subconscious we need to become aware, as also noted above, and we can become aware by paying attention.

goal : to write to subconscious

how : paying attention means we become aware which in turn means we can write new to the subconscious by doing different

By way of example:

I always, always, wake up with a headache, often it will be an unbearable migraine, coupled with all over body pain of varying degrees, and topped off with utter exhaustion, feeling like I’ve had no sleep at all. My automatic reaction to waking up like this was to moan, try to escape, and become extremely irritable to myself and towards those around me. Thus releasing stress chemicals and hormones into my body. It took me hours before I would recognise that I was doing this. And so I needed to become ‘thought’ or ‘mind’ aware. I needed to become more conscious of what I was actually thinking and then what I was doing in response to the thoughts about these daily awful experiences.

It sounds contradictory when we don’t want to behave in a certain to start the change by paying attention to it, by being conscious of it. It almost feels counterintuitive to give attention to it rather than ignore it. But, you have give attention to it, to notice it, in order to actively change it. Because usually these behaviours or responses are so automatic that we only realise ‘we’ve done it again’ by paying attention. Hence, the more aware you become of something, the more power you will have to change it.

One dictionary definition of mindfulness states it as:

  • the quality or state of being conscious or aware of something.
  • a mental state achieved by focusing one’s awareness on the present moment, while calmly acknowledging and accepting one’s feelings, thoughts, and bodily sensations, used as a therapeutic technique.

And so the only way to implement these changes is, to pay attention, be aware, or in other words become mindful of your narrative stories …

And how can I implement it soon enough?

So, in my personal daily waking up example above, I needed to become more and more aware of what I was thinking and how I was responding to that thinking. Until I eventually got to awareness in seconds rather than hours. The more you practice the more it becomes automatic; written into your subconscious.

Then once I was that aware I could then do something different.

I found the following techniques to be extremely useful in developing awareness of my processes:

Consciously feeling your body

Consciously feeling your body is about being aware of what you are feeling in your body at a chosen, or at any given, moment. People with ME don’t like to do this because often we are always feeling sick and / or in pain and it feels uncomfortable to be aware of those feelings for too long. But, if we don’t give them attention we may simply ignore them and carry on, missing the opportunity to change our biochemical and biophysical state in order to encourage a more healing environment.

For example:

You might have body parts that tense up when you are engaged in work or some activity, for me interactions and communications with people are enough to cause me tension because of the amount of effort it takes of to me to engage with people.

This would lead to PEM and really bad headaches and upper back pain, leaving me extremely exhausted, leading to frustration and migraines the following day. Becoming aware, or mindful, of this has helped me to consciously prepare for conversations and engagement with people, using breathing techniques beforehand and throughout. It has also thought how little I can actually tolerate. Resulting in me being strict regarding not going on for too long.

Initially I had to consciously make myself do the breathing techniques and do a lot of extra thinking throughout a conversation about how I was feeling in the here-and-now, which had its own payback issues, whereas now it’s almost second nature for me to do them.

An easy technique you can use to become aware of your body is a body scan style meditation. This is where you scan through your body, starting at the soles of your feet moving up to the top of your head, noticing how each part feels. As you do this, find and consciously relax any tense, aching or sore parts, thus changing your biochemical and biophysical state. These changes are key to relaxation and encouraging a more healing state and you will also feel better as you release tensions and feelings that your body has held onto around this awful illness.

Consciously feeling your emotions

Consciously feeling your emotions is about knowing what thoughts produce what kinds of emotional responses in your body. This can help you loosen the grips of any strongly held negative patterns you may have.

A good technique is to consciously recreate high emotionally scenarios when you’re alone and feeling safe in order to retrain your reaction(s) for the next time you bump up against this issue.

For example:

Let’s say that having to have a meeting with a doctor causes you anxiety and fear. I know I definitely do feel this way because of all the medical gaslighting I’ve experienced.

The thought that they won’t believe me, because all my tests are maybe negative, plagues me and I get sweaty, irate and tearful (emotions that always make my ME worse) because it triggers an adrenaline response. And because I trigger the adrenaline I don’t behave like the very sick person I actually. I’m kind of buzzing. Sometimes kind of crazy. And other times I actually cry, something I don’t do often at all.

When you find yourself in these situations it’s extremely difficult to consciously do anything in that moment because it creeps upon you, no matter how much you have planned your words, emotions take over.

That said, when you get back home you can spend some time training your mind and your body will follow.

Find a cozy safe spot.

Take a few deep breaths.

And recreate the scenario.

It will probably evoke similar, if not the same, highly charged responses and emotions as the actual experience. But this time you stop yourself becoming lost in the automatic pattern(s) that try to rise. You can instead consciously feel all your emotions in their fullest without being afraid or over powered by them. Feeling your emotions this way weakens their power over you.

You are now becoming aware of thought patterns and the reactions they create in your body. This awareness slowly starts to dissolve existing thought patterns and their corresponding emotional responses.

Next time you visit the same doctor, or a similar situation just a different doctor, you will be aware when certain thoughts start getting generated and your body’s emotional response. But because you have already felt your emotions consciously and because you are aware of your thought patterns, you will find that they have significantly weaker reactions. Continue this and soon the reactions would die down completely.

Consciously watching your thoughts

Consciously watching your thoughts is about trying to become an observer of what you are thinking rather than being tied up with the story of the thoughts. Being alone most of the time we can get lost in our thoughts for the most part. The idea in ‘watching’ our thoughts is to detach from them for a few moments and watch them as a neutral observer.

Doing this can allow you to become aware of any negative thought patterns that you may have. You may even find yourself questioning your beliefs, which in turn will weaken those negative beliefs and then you can consciously replace them with positive ones. Again this all helps to create a biochemical and biophysical state that is a much healthier want and more conducive to healing.

For example :

Sit comfortably, take a few deep breaths, and calm yourself down. Start to become aware of your mind producing thoughts without engaging with them. If you find yourself getting engaged with the thought, take a moment to acknowledge that and return back to watching.

If certain thoughts produce strong emotions in you, feel the emotions instead of trying to suppress the thoughts. Divert your attention within your body and feel the energy behind these thoughts.

As you watch your thoughts, you will become aware of many negative thought patterns running in you. Simply becoming aware of these patterns is enough for them to start disintegrating.

Consciously focusing your attention

Consciously focusing your attention is about gaining control over where your attention goes. In any given moment, our attention is usually divided between many things. Most of us don’t have any control over our attention. It just wanders about, like a lost lamb, anywhere it wants.

Learning to focus your attention will help you gain control over your it. And the more control you have, the better you will be able to practice the all of the methods discussed above.

Meditation can be a most effective way to enable us to get mastery over our attention. It trains us to not follow any old thought that pops into our head, and to keep bringing your attention back to your focus point, which is usually the breath.

Using the very same style you can feel your emotions for longer periods of time without getting pulled into thinking and story telling narratives. Similarly, you can watch your thoughts for longer without getting lost in them. You can also stay mindful for longer periods of time.

One of the many symptoms of ME is an inability to focus. So here, meditation really can come into its own. Meditation will help you get mastery over your attention.

In Summary & In Conclusion

You can start listening to what your body is telling you. However, to do so takes effort, at least initially anyhow. The key is being mindfully aware of our:

 f e e l i n g s * e m o t i o n s * t h o u g h t s * a t t e n t i o n

This will enable us to we are be more mindful about what we can and can’t do. This will have the beneficial knock on effect of altering our biochemical and biophysical state, which in turn will alter our internal state to one more conduct to health and healing. This can lead to slight improvements, which can always be beneficial.

Therefore, the above methods can also be your gateway to deeper awareness. They can be used separately or together, depending on what you need or what you find beneficial at any particular time.

They have helped me loads and I believe they can help you too. You just need to given them a go and feel free to contact me to share your outcomes or with any questions you may have.

 fragmented.ME xXx

My birth name is Denise, but I’m know as Bella to those who love me. I have a first class honours degree in education & psychology and a strong passion to keep learning and educating others ... I have severe ME/CFS and lots of other chronic illnesses and I started this blog as an expansion to my instagram page, where I advocate for chronic illness. I am married and have two grown up boys, or should I say young men. I have three gorgeous grandchildren, one boy and two girls. And despite being chronically sick and housebound I am mostly happy. 🥰