(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.
It takes practice – lot’s of it – to shift the mind to more helpful thought patterns
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.
Recognizing that we have the possibility of being directors in our own play can help us bring peace into very difficult situations
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?”
When you’re ill it’s easy to be exposed to a unceasing barrage of negative thoughts
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.
Important!
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.
The difficulties some people face are immense
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.
- Check out Anne’s story here and her other blogs here.
I have found that one must first focus on doing whatever they can to get some quality sleep!
For me, it is a variety of natural sleep aids, in “rotation”, night after night. Now that I am older than most of you and taking the sleep aids at bed time, they only work for about 3 or 4 hours, then I need another dose in the middle of the night to make it till morning. Again, in rotation.
In my experience, Swanson vitamins on line has the best price and quality but there are others.
I like the product, Sleep Essentials, GABA, Chamomile, Passion Flower, etc. I don’t have a problem with dairy, so, I wash them down with milk.
I have good luck with 2 vitamin B multi caps in the afternoon, not at bed time.
No sleep, means a bad, bad, day! RP
Try Dr. Mercola’s Melatonin Sleep Support in spray form – contains Niacin, Vit B6, GABA, L-Theanine, L-Tryptophan, Melatonin.
Works wonderfully for me. Take 1 hour before bedtime. No side effects. I sleep through the night.
No junk in it. At Dr. Mercola.com. Affordable.
Wish you well.
A study showed that 300 mg of Valerian, 80 to 100 mg of Passionflower and 30 to 50 mg of Hops was as effective as 10 mg of ambien. Takes 2 weeks to take effect.
Just a note on hops: it can have a depressant effect (as well as melatonin). So, if there is underlying depression, both can exacerbate this.
Anne’s theory on coping is the best one I have read.
The sleep issue is paramount. However I have been misdiagnosed so many times and overdosed on the wrong meds by CFS Specialist I am wary of meds in general.
The CPAP machine changed my life. No one wants to keep hearing this over and over -but if you haven’t tried it consider it.
All of my AFIB and Palpitations have stopped. i use it 7-8 hrs every night. I still take Herbal formulas to go to sleep. ENERGY IS UP.
NO PHYSICIAN REC THIS- MY CFS DR SAID I HAD HEART FAILURE.
NO EVERYTHING IS NOT GONE- I STILL FIND STRESS TRIGGERS EVERYTHING IN ME. WHEN I FEEL GOOD I TAKE ON TOO MUCH.
I FIND ANNE’S FORMULA EXTROIDINARY. GOING TO TRY IT ALSO.
I QUIT SEARCHING FOR THE MEDS TO HELP ME LONG AGO. IT IS NOT THE ANSWER!!!!! HAD THIS FOR 30 YRS.
SEEING ENVIRONMENTAL DR ALSO WHO IS GIVING ME COMPOUNDED VITAMINS AND B-COMPLEX IV’S.
GREAT BLOG ANNE!!!!!
just to be able to THINK while having a terrible time while lying in bed in AGONY with M.E./CFS is a blessing for those that CAN think good thoughts BUT when the brains involved SO much, there is NO ability to think anything good! the headaches are SUPER and makes the WHOLE body unbareable, too weak to think, too weak to cry.
just have to lie there till the VERY PAINFUL PRESSURIZED HEAD starts to feel better in able to walk, talk and get out of bed.
isn’t this ENCEPHALOPATHY? OUR BRAINS?
isn’t there something for this?
I think this is what makes these practices so difficult for many. I wish I had an answer but I don’t. I think with practice you can relieve some of the distress – not the pain necessarily – but the distress. John Kabat Zinn developed mindfulness techniques for people in severe pain.
Could you be having migraines?
Thank you Anne for sharing your copying skills. They seem to me to be very close to what I’ve learned from meditation and my 12-step program and Byron Katie.
I would also suggest to people that they read Toni Bernhardt’s book “How to Be Sick” and perhaps her new one which I haven’t started yet.
This is by no means easy but I’ve learned from my original meditation teacher Eknath Easwaran that I am not my body and I am not my mind. That the mind has to be trained like a puppy who runs off all of the time to come back to the focal point which is in his a memorized passage. The better trained your puppy-mind attention becomes, the easier it is for us to come back to what we want to focus on. We need to train our minds all the more because we have so little influence on our bodys’ condition.
Byron Katie demonstrates on Youtube how to let go of thoughts that aren’t helpful. Her book “Loving What Is” demonstrates through her method called The Work how to live in acceptance and let go of untrue thoughts.
I especially appreciate your acknowledgement of people who are suffering so much that no amount of coping works for them at given times. We lost a beloved member of our support group in the South Bay CFS Support Group and it has been very painful for her family and friends. I would encourage people who are thinking of committing suicide to talk to others for prospective. Things can be terrible for a long time and then turn around unexpectedly as they did for me. I’m not cured but something helped me have a fuller life almost by accident. No one knows what the future will bring–and if some coping strategies can get us through till the miracle comes, I don’t want to miss it!
Yes – training the mind is so important when you’re up against such difficulties. Byron Katie sounds fantastic – i’m going to check her out. I think she is the one that Toni Bernhardt uses as well.
This post was very helpful to me because it brought back the theme of ‘practice’ and how difficult this all is. Some time ago I took a stand that I am satisfied – no matter what. It took awhile but it worked but then I dropped it and fell back into the humdrum of daily existence.
I’m retaking that stand and as I do so I notice how much easier things are and how much more comfortable and outward looking I am.. It’s no panacea, but it helps – I wouldn’t be without these mindfulness tools as we work forward for and look forward to a true understanding of this disorder and how to fix it.
Thanks Anne!
Once a very active woman, I now am a “couch potato”. But as I keep telling myself, it is what it is, and I can chose to be positive, or negative. Yes, to me it’s a choice!
I was forced to stop teaching at 52…thought I had lots of living left in me. I’d raised three kids on my own, and it was “my time”! Well, I’m now 70, and not doing what I’d planned, hoped, to be doing, but that’s OK. I make a conscious effort to find simple things to enjoy that I didn’t have time to do before ME took over. I savor the luxury of drinking a flavorful hot cup of coffee while sitting on my front porch watching the sky and the birds…absolutely beautiful (feel very fortunate to live in south Florida); I drive to the beach and watch the surf and smell the salty air; I do the Sudoku each day…sometimes successfully 🙂 ; I read the paper. I am fortunate that I love to read (I now have to write down the name of each character so I can keep track of who’s who), so on days my mind is working, I spend a few hours (not in a row) reading. Once an athlete, I now watch LOTS of sporting events on TV, and feel no guilt; I don’t allow my not-so-clean house to get to me! Since I ordinarily don’t have the energy needed for a phone conversation, I send emails and write letters to people who don’t have email. My life is definitely lived at a slow pace, but I am thankful (I talk to God all day…frequently out loud) my health is not worse than it is, and that I am content living a simple, frugal life!
I liked Anne’s example of the cocktail party…in addition I’d like to add that I’ve eliminated negative people from my life, and try to be honest about how I’m feeling with just a couple of close friends. I no longer make plans because I had to cancel 95% of the time, and that bothered me more than having to miss an event. When I’m up to it, I invite someone over for a cup of tea and a chat. No more sailing and roller blading, but that’s OK. As I said previously, it is what it is!
Love the CLARITY of this post. You have found a secret. May not know it yet-but you have.
I will take some it with me today.
Thank you.
Carole
I love the idea of being the director of a play and choosing who will play a starring role and who gets the bit part. I am going to try it as “my life as a movie” with me as director. I can’t wait to cut entire scenes with people who cause me grief and give staring roles to the ones who make me feel good. I’ve noticed that lately I have spent far too much time and mental energy focusing on negative things in my life and needed a new coping mechanism to try.
Thanks.
I’ve already profited from your suggestions. Last night I woke up at 3am filled with body aches and darkness. Wait, I thought. I have a choice. I don’t have to spiral down into despair. So I imagined myself the director/editor of my own movie and cut out the rubbish. I focused instead on my wonderful family and friends, and after 2 games of solitaire on my IPad, I relaxed and fell back to sleep.
This morning I carry some of that positivity with me — though I know how very hard it is to maintain.
I am going to print out your blog and carry it with me. Thank you for your thoughtful, straightforward, honest comments.
These Posts have lifted my whole day.
It is hard for me in deleting negative people as most are family members. Trying to do it slowly.
Some I bring on myself as I have an Animal Rescue and just can’t seem to let it go!! We rescuers are all they have.
Thanks you for the uplifting posts.
Carole
CORT THIS IS BY FAR THE BEST WEBSITE FOR CFIDS.
THANK YOU,
CAROLE
I love it! Thanks Carole 🙂
I must say that that practice to looking at the three people with different interpretations is really helpful. I’ve always had trouble visualizing ‘my safe space’ or things like that, but visualizing somebody having fun or being relaxed or whatever is really helpful.
A question that goes along with that is “If Cort was going to be happy – what would that look like?”
It’s going to the top of my list of stress reducers. 🙂
I recently bought a lightning sensor from Heartmath. A clip goes on your ear and the purpose is to help you get in “coherence” – basically a device to help you meditate. It’s amazing how it changes coherence levels according to your thoughts and emotions.
Thank you for this blog. After 21 years with CFIDS, I’m just really now choose to acceptance. Now the challenge is teaching my docs that my unique symptoms are indeed real. I’m especially glad you spoke of drug intolerance. Several weeks ago, I asked for my thrice a year refill of T3, 30 tablets. I take one about twice a week when my pain is truly overwhelming, usually the day after PT. My doc said I was in danger of becoming addicted, and wanted me to take buprenorphine, he said 4mg at night to start then more. He said it was truly helping people with chronic pain. Knowing myself well, I took 1 mg. About 90 min later i became almost deathly ill. I threw up for the next 14 hours, mostly dry heaves after my stomach emptied. It was four days before I could do anything but rest, cry and hold my basin. My husband called my doc who said I should keep trying to take it…..I don’t think so. Turns out it’s a cousin of morphine, which I know myself to be highly sensitive to, and he missed it. I have my codeine back and am looking for a new doctor……not an easy thing….
Wow….what a horrible reaction! (We are so sensitive!)
The question for happiness might be how much can one accept? I remember a quote from Werner Erhard “Happiness is accepting what is”
And Sylvia Boorstein says “May I meet this moment fully, May I not complicate it, May I meet it as a friend.” What a task that is with ME/CFS and FM. That’s going to take practice….:). That’s all about widening our acceptance level.
You just have to really widen your acceptance parameters in ME/CFS!
I have the CFS/ME side of it, but I’ve read that alcohol can help relieve FM pain. I’ve never done very well after drinking, and I’ve read there’s alcohol intolerance with CFS. I used to get major palpitations from caffeine, but now can tolerate it okay.
Alcohol intolerance is common. I’m not sure if that’s a good or a bad thing given how difficult these disorders can be 🙂
This post was very timely for me as my pain and fatigue have been off the charts. I have been struggling to stand against those feelings of overwhelm, fear, and despondency. Thank you for your candor, and willingness to share your journey with us. I really like your analogies and will definitely try them out. You have helped me greatly, and I thank you 🙂
Please – if bedbound consider raising the head of your bed so you sleep on a slope. I have silent reflux
and as the symptoms of this are hard to spot it’s often missed. The symptoms include headaches, sinusitis and a swollen head but because these are not generally listed as problems don’t expect a doctor to tell you this. Anyone lying flat is likely to have some reflux and reducing the inflammation caused by this may produce a gradual improvement.
http://www.webmd.com/heartburn-gerd/guide/laryngopharyngeal-reflux-silent-reflux
I now take omeprazole in the early evening (normally prescribed to take in the morning) and those who can tolerate medication could ask for a trial of this.
Hello Tatt,
I’d be very interested in hearing more details on how you raised the head of your bed. Are you sleeping on a wedge, with only your torso raised? Or, does your bed slant all the way from your head to your feet? If the latter, how did you achieve this?
My interest is not reflux-related — I’ve pretty much solved that problem by removing all starchy carbs and grains from my diet. Rather, I’ve read that raising the head of the bed is one way to increase blood volume in patients with POTS. The usual suggestions (adding salt to the diet or medication) are not an option for me. Even a little bit of salt increases the fluid build-up in my ears, and the resulting hearing distortions are unbearable. And, my chemical sensitivities are too severe for most medications.
Thanks.
Here’s a blog on it – not sure of the best method, though. http://www.cortjohnson.org/blog/2013/06/16/heads-up-are-you-missing-an-easy-way-to-improve-sleep-and-health/
IMy partner went to a builders merchant and had a piece of wood (4×4 inches to start) cut to the width of my bed, I have 6×2 now I think. This was then placed at the head of the bed, My bed had feet on and those at the top were left on the bed to help keep the wood in place. I became concerned about supporting the bed properly so we had a piece of wood (think its 2×2) cut to go under the middle of the bed. Feet were removed from the bottom of the bed. You will find that sheets have a habit of slipping down a bit and I have a zipped mattress cover. However the initial trial was done with scrap wood that we happened to have in the garage and you can get bed risers (bed elevators on amazon.com) which might work. Wedges are expensive, this is the cheap method.
This also helps a little with sleep apnoea so my partner’s snoring reduced 🙂
Even if you think reflux has gone it may be present at night. I’m gluten free but if I exercise I still get the inflamed sinuses, coated teeth and sometimes voice loss that tell me I have a night-tiime problem.
Thanks Cort, and Tatt, for your responses. It seems this would be a good retirement project for my husband — figuring out how to achieve the slant, thereby allowing me to test the effects of raised-head sleeping before we replace my bed later this year. If it works for me, perhaps we can justify having a custom bed frame built!
Hi. I have POTS, and raising the bed made a worthwhile difference. I just stuck books under the legs on the head end of the bed. 2 1/2” height was good for me. With books, it is easy to experiment with different heights, and if you have some books you’re not reading now, it’s free. Other things that helped were doing calf raises once a day, just 10 or so, I think, with a few leg raises and pushups standing against a wall. I have CFIDS, so I can’t push it on exercise. I do notice a difference if I stop that one. Turmeric helped, just plain old grocery store turmeric, half a teaspoon to two teaspoons a day. Helps anxiety and joint pain, too. Half a teaspoon of gotu kola powder a day was helpful too. Licorice root was very good for POTS stuff – helped fast on especially bad days, used to take extra at those times. Anyway, that’s my non-drug, non-salt things that helped me. Couldn’t handle the drugs I tried for it. Be cautious with herbs and see how they affect you if you try them, of course. B-12 sublingual, 10,000mcg a couple times a week helped too, folic acid, iron… things that combat anemia. On very bad days, hydrating with ginger ale or coconut water… couldn’t stomach plain water. Best wishes!
There is a qualitative difference between ‘positive thinking’ and ‘positive focus’.
The first makes feel like a delusional liar, the second makes me feel good about where I am in this moment – moment by moment.
Also highly recommend Byron Katie’s, ‘The Work’. It’s very simple, very direct and very effective.
to Dee: re Encephalopathy, – Pressure in Head.
Myalgic Encephalo-myelitis….ME
I used to have this problem every time I had a relapse of ME/CFS and the pressure in my brain and spinal cord was the worst of the problems I had to deal with. I started taking Hepapressin Injections and Supplements from Dr. Enlander who I also saw a few years ago for an initial visit and lab testing. A few months after I started the Supplements and Hepapressin from Dr Enlander..www.enlander.com
I no longer have the encephalitis/meningitis type of symptoms I had for years previously. It has been several years now and those issues are gone! Whether or not this would work for someone else I cannot say but it did work for me. Dr. Enlander specializes in ME/CFS and also does SKYPE consultations so it might be something worth looking into even if you can’t get to New York City to see him.
It is possible to feel better even if you have been sick for years and nothing has helped. You never know when something. or someone. will be able to help you if you help yourself. Never Give Up!
Excellent article too, i have also used similar techniques and they help a great deal. The mind can be mischievous and needs to be tamed to be our servant not our master.
Peace, Love and Harmony,
Bev
Does anyone have information on Epstein-Barr virus? my friend has had high titers for 23 years. How would this impact her health now, as she tries to be the best she can with ME/CFS/FM and is now fighting new infections. thank you
Check the Simmaron Rising blog on the Simmaron Research Foundation’s website for several blogs. One more is going up today. If you’re subscribed to this blog you should get it.
I’m new to these medical problems and reading this blog has scared the hell out of me.