(Anne writes on how she copes with a very severe form of ME/CFS. Check out Anne’s story: From International Traveller to 43 sq. Meters here and her other blogs here. I added the images and captions – Cort)
Insight and Practice …. A Lot of Practice
We are all waiting for effective treatment for ME/CFS, but since we are not getting much help from those who could make headway in that issue (the government and its agencies, research funding bodies, the medical community), in the meantime we have to rely on coping. I know Cort loves guest posts on coping so here’s my contribution.
While I still must say I have an almost unbearable life with severe ME/CFS, some years into the illness I did manage to reach a degree of acceptance – at least much more than at the beginning. Through this decade of severe ME/CFS, with 24-7 immense pain and massive suffering, I think it has rescued me from going completely crazy.
How did I reach some sort of acceptance? For me, it’s been all about the insight that I have the possibility of choosing what dominates my mind. That insight – and then the practice… A lot of practice.
I’ve been to a few therapists and read many books to try to find a way to cope (I think I’ve had more help from books and talks with other patients than from therapists). Some ideas and images have really helped me. Here are those bits:
Putting Yourself in the Directors Seat
One is the image that your mind is like a theatre stage, with thoughts and feelings as actors in the constantly ongoing play. We can’t choose the actors, but – important – we can decide who is in focus in our play. We choose who’s in the spotlight, and who will have to go sit in the background. The main point is that we are the directors of our own play.
So thoughts and feelings are going to pop up, we can’t control that, but we can observe them and then decide who we’re going to allow in the spotlight. For example, when I’m preparing for bed and want to be peaceful, who do I want in my mind: someone I’m angry with? The psych people destroying the ME/CFS field? No, loved ones, good moments. So, for example, if someone I’m arguing with or disappointed with pops up in my head, I leave her/him and bring a good person in.
It doesn’t work the first time, or the 31st, but maybe the 91st… Same with thoughts about things. Sad and frustrating thoughts about my situation will pop up, I will replace them with the one thing that was OK today. I will bring that thought forward, focus on that. And I will do it 91 times… In the end it works.
Another image of the same thing is that our minds are like a cocktail party. There’s going to be a lot of people (=thoughts and feelings) there, we can’t choose who’s there, but we can choose who we want to hang out with in our minds. We can either hang out with the annoying thoughts and sad feelings all day long and argue and get riled-up, or we can go and hang around the good thoughts/feelings.
It’s a choice and a practice. No quick-fix, I will have to keep practicing for the rest of my life, many times it still doesn’t work. But I’m doing much better than before when I was just “attacked” by thoughts and feelings and didn’t take responsibility for which ones I let pass and which ones I hang on to.
Thinking about the theatre again, I try to put myself in the director’s seat.
It’s About the Interpretation
A third image that has helped me: We choose how we interpret a situation. The image that really got this through to me was this: A person is sitting on a cliff by the sea watching a sunset. What is this person thinking and feeling?
- “Oh what a beautiful sunset, I’m really enjoying this.”
- “This is so beautiful, and it could be so romantic, but I’m single. Why is my life so sad?”
- “Oh lovely, yes, but what time is it? There are so many things I need to get done. How long do I have to sit here and enjoy the sunset?”
To me this just shows that many times the situation is not what matters, it’s about the interpretation. I use it a lot. For example with the fact that I’m housebound and mostly bed bound. To be honest, I’m in prison. I could kill myself thinking about that, but I’ve worked out a way to look at it from a different direction. From knowing how terribly we ME/CFS patients fare in (non-ME/CFS-adapted) hospitals, I’ve realized that in that perspective being at home is a blessing.
If I were forced to go to hospital, I would long for this place and the situation I’m in now. Why not try to find peace in it now, turn the interpretation around. It’s so easy to only be grateful for things retrospectively when it’s too late. I really try to work on interpreting things to make the most of ‘now’.
I’m not a person who thinks “positive thinking” will “solve it all”. I’m skeptical of many “coaches” and therapists out there and their advice. But I have realized that in this awful situation, we do need coping methods, otherwise things will just get even worse.
One book I read had a pretty funny inverted list. It was like “Well, if I haven’t managed to convince you about the need of any of these techniques before now, I’ll just go the other way. Here’s a list of how to really make yourself feel awful”:
- Constantly ask yourself: Why me??
- Constantly compare the life you’re living now to the life you would have wanted.
- Make sure to also constantly compare your life with the life of others who are in better situations.
- Focus on the negative things only. When a positive thing pops up, make sure to push it away or turn the interpretation into a sad one anyway.
The Happiness Trap
“I’m skeptical of many “coaches” and therapists out there and their advice. But I have realized that in this awful situation, we do need coping methods, otherwise things will just get even worse.”
I think all of us need to sift out the coping techniques that are good for us. Here’s one last thing that resonated with me: In the book “The Happiness Trap” I learnt another way of dealing with the often negative thoughts that pop up in our heads. The trick is to say to yourself: “Is this thought helpful?” If it’s not, try to just let go of it.
Don’t deny it or push it down, but also don’t get caught up in it, and all the following spirals of thoughts that come with it. Just recognize it, recognize that this is your mind (which is always problem oriented) hitting you with a negative thought, recognize that it’s not helpful.
If you can, see if there’s something else you can focus on. Try the mindfulness techniques, just observing your surroundings.
Focusing on Meaningful Action
Or, and here’s a really important bit: focus on “meaningful action”. This book claims that our lives are not made up of our thoughts, they’re made up of what we choose to do. When I feel awful and my mind is full of negative thoughts, I have learnt to think: “What can I do right now that is “meaningful action”?
Is it to make sure I fulfill my pacing schedule and rest? Do my relaxation exercises? If I have some energy, call a friend? Or do some advocacy work from my bedroom?
If any of that is the meaningful action I can do, then I focus on that. It has kept me from destructive patterns. If I, in the midst of feeling awful and struggling with letting go of negative thoughts, still do something meaningful, then I’m still on the right track and it may help my body and mind feel a little better tomorrow.
So these are my personal coping methods. I’m sure we all need to develop a different personal set.
A very important last note: I want to say that I’m one of those who believe that not every life situation can be relieved by coping skills or change of thought patterns. I think there are situations which are just beyond coping.
Many of the severely ill ME/CFS patients are dealing with such hellish circumstances, such intense pain and unbearable suffering that I cannot think of anything to say to them to help them cope. Many of us are often not tolerating any sensory input, meaning that we are unable to divert our thoughts or have the loved ones visit; many are suffering from incurable pain 24 hours a day; many are completely bed bound; and some of us are so drug intolerant that it’s very hard to see how relief would ever reach us, even if a cure was found.
What I want to convey by this is that the suicides which will all know are common in ME/CFS, to me are not in any way evidence of poor coping skills. I think they are justified in these situations beyond coping. While speaking about coping techniques, I felt this was important to express, as my personal view.
I am in awe of the coping skills developed and implemented by thousands, millions of ME/CFS patients around the world every day. I have had great help from talking to other patients and from the blog posts by Cort and others, and I hope maybe some of you might find a little straw of help somewhere in this post – while we keep advocating to one day get proper medical help.
Learn how a 67 year old retiree and his wife felt compelled to lace up his running shoes and get into action to support their son – and everyone else with this disease in A Run For His Son…and Everyone