After all the doctors and all the treatments, ‘coping’ is what many of us are left with. The drugs may help, the diet may help, the supplements may help, but the core of the disorder with its considerable physical, emotional and mental impact remains, and few of us are probably ready to deal with a chronic illness effectively. We don’t get classes in how to, as Toni Bernhardt puts it, ‘be sick’ in school. We pretty much have to figure it out on our own.
In this blog we introduce a section called ‘Conversations for Coping’ in which two or more people talk about what they’re doing to reduce the emotional and mental burdens ME/CFS places on people with this disorder. In what will hopefully begin a series of blogs, a Christian – Brenda, and someone interested in Buddhism and a course called Landmark Education – Cort, talk about some techniques they use to reduce the emotional and mental burdens of ME/CFS.
First, Brenda talks about how she uses prayer to reduce the frustrations she encounters, and then Cort talks about a process he uses to reduce the force of the upsets which threaten to consume him.
Brenda – Using Prayer to Release the Frustrations ME/CFS Produces
A friend would call with complaints about her very troublesome day at work. She had so much anxiety it would overwhelm her. A demanding boss caused stress in her daily routine, frequently affecting even her home life and social life. She had trouble sleeping, not because she was ill, and the illness caused anxiety, but because she carried such a heavy load in her position at work.
I’ve been in the same place so I know those challenges well. Being out there in the working world can tear one up at times but that was nothing in comparison to the daily pain of this illness. Once I became ill it was obvious I needed something really, really big to get me through my weaknesses, my fears and my sense of loss.
As a Christian, I had a whole lot of questions for God. I wondered, if He is such a good and merciful God why would He allow me to suffer? What had I ever done to deserve this illness? Couldn’t he just give me an occasional day where I felt like I did before this monster overtook my body?
I know some people do regain their former good health. I just don’t know any of them. (Do you?)
My friend needed someone to smooth the ruffled edges of her damaged life so I used my first-hand knowledge and we did the same thing I learned to do when confronted with stress. We prayed for God to guide us down the path of least resistance. We began to have conversations with God.
Amazingly, my friend found herself developing a sense of calm in just minutes. Shortly after we started these healing sessions she started talking to Him on her own throughout her hectic workday.
After a month or so she still called often but not daily. Soon, I noticed the direction our conversations took no longer wreaked of frustration and anger. This was the beginning of her ‘Letting Go’ and what I call ‘Letting God’. She now prays daily, asking him to help her carry her heavy load.
So today I pray often. I pray for that sense of calm. With our new spring weather, we are awarded Mother Nature’s beauty and grace. Simply opening the windows and doors, hearing the birds sing, feeling that warmth in the breeze that is ‘oh so welcoming’.
I thank God today for the sunshine. I ask Him to give me enough energy to get a few chores done in the house. I will ask Him later to take a short walk with me to the mailbox. I thank Him for providing me with the ability to rest whenever necessary and then utilizing most of my limited energy wisely. Without prayer I often feel some restlessness in my day.
Prayer is not a guaranteed way of making my life peachy, but it does give me a sense of contentment, even joy. That is huge….
Here are two of the scriptures that I rely on. One suggests that we seek God’s strength with prayer (Matthew 26:41), and the other suggests that if we rely upon our own strength in difficult times, we may fail (Proverbs 28:26;Jeremiah 17:9; Matthew 26:33).
Cort – Dealing With the Inevitable Upsets
I, too, feel a sense of strange restlessness. In my case it takes the form of what the Buddhists call ‘monkey-mind’ - my mind flitting from object to object seemingly without cease. Along with that comes tightened painful muscles and fatigue. My guess is that having chronic fatigue syndrome induces this state of monkey-mind and the stresses that come along with having it make it worse. The fact that brief returns to health have always been accompanied by a calmer state of mind suggests to me that this kind of distracted thinking is a core part of my ME/CFS.
I’ve thought of these symptoms as troublesome but minor by-products of an illness that I had little control over. Now I’m beginning to wonder about how minor they are. I believe that rushing mind and those clenched muscles are surely taking their toll on my already depleted energy state.
The question is how to bring contentment and peace into my life. There are no easy answers for me. One of the things I’m doing presently that does help at times, though, is below.
Dealing with Upsets
There is a process for dealing with ‘upsets’ I learned while doing a seminar from Landmark Education. Landmark is all about getting us into the ‘here and now’ and this process can do that for me.
‘Upsets’ at times seem not just common but almost relentless; if it’s not one thing, it’s another and every upset is a potential energy drain…
I’m the Source - The first step of the process is to recognize that being upset; ie that being angry that something is not right, that things should be different– is centered in me. That anger, and that frustration (as well as the idea that ‘X’ shouldn’t be happening) is something I’ve added to the situation. That means that it’s something I can be ‘responsible for’ - something that I can ‘own’. That suggests I hold the key to reducing the hold upsets have on my life.
Dealing with upsets is not about changing whatever happened that I thought was ‘wrong’. It’s about changing my reaction to that incident.
It happened in the Past, So Let’s Leave it There - The first step is recognizing that whatever triggered my upset happened in the past but that I’ve drug it into the present. Say Doctor Y said something that was upsetting. Getting clear that that upset happened at a specific time and place (and then was essentially over) can be quite enlightening. Whatever happened – it’s over, it’s really over and now there’s just the present to deal with.
Recognizing the Commitment -A second step is recognizing that I was only upset because of a commitment in which ‘something wrong’ could show up. A natural commitment and desire to feel well, for instance, is behind an upset about feeling poorly. A commitment to pay my fair share of my expenses is behind my upset that I’m not doing that. Recognizing the commitment behind the upset can return me to my commitment instead of leaving me absorbed in my upset. It allows me to get back on track.
Recognizing the Pattern - Looking back to the past to see where I reacted similarly to similar situations allows me to see that I have a kind of typical behavioral response to upsetting things that was most likely created when I was very young. Seeing this takes some of the heat off the upset; it enables me to see that the stomping around, the anger, whatever the behavior is – was a strategy I probably developed as a young child for getting what I wanted. The problem is that I forgot that it was a strategy and now I’m just stuck with this energy depleting behavior. In the face of the many upsets I have to deal with simply by having ME/CFS being angry is not a great strategy.
Choosing a Different Path - Finally, when I see that a) it all happened in the past and should belong in the past b) that my upset was only in reference to commitment I had, c) that I was basically caught in a behavior pattern that was established early and doesn’t work very well in my current situation, I can choose to step out of that familiar behavior pattern and do something unfamiliar.
I notice that when I’m upset or confronted with something I fear is going to affect me badly; say a climb up a hill or an energy depleting task – I tense up, then rush and try and get it over with as quickly as possible. Running on adrenaline is not a particularly good idea for someone with ME/CFS. A far better approach would be to approach the problem calmly, so in the face of that upset or fear I can choose to insert calmness into the situation. That allows me to slow down, take it easy and that helps me maintain my health better.
I was standing in the store today. My body was aching, my muscles felt like they were on fire, I was on the verge of a cold, and I could see myself beginning to react; my breath rate was increasing, my jaw was clenching, my body was tightening up – but this I caught that pattern and did something ‘unfamiliar; I stopped trying to fix it and just observed it.
Just watching was an unfamiliar way of dealing with the physical upset of being upright for too long and pushing too hard and it helped. I still had pain but my mind was clearer and I was less ‘upset. I’d say it took maybe 20% of the pain of my symptoms away.
Like Brenda, these practices haven’t made my life ‘peachy’; I would say that most of the time I’m not calm but there are times that I am and I love it when they occur. When they do occur I feel like a piece of me that was missing is back.
Quality of Life Plus Some Health Benefits
For me this approach has mostly resulted in quality of life benefits. I have not increased my ability to exercise; in fact, I’m exercising less now because this slowed down approach to ‘upsets’ is helping me recognize more and more when I am going too far. It more and more also confirms for me how important it is to pace myself both physically and mentally.
I more and more recognize, for instance, the need to take short breaks, and I’m using some of Johannes Starke’s ideas and tools to help me do that.
However, I have not yet found the levelness of calmness that Brenda has found…
How do you deal with upsets? How do you find peace?
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