The holidays are a special time of the year when family connections are renewed, but they can be stressful even for healthy people. In my experience, the holidays present two major stumbling blocks for people chronic fatigue syndrome and fibromyalgia.
The Intense Activity – balancing your desire to be with your family and your health needs. Saying no to activity when you’re yearning to do ‘x’ or provide ‘y’.
The promise and problems of holidays! How to survive or even thrive in the holidays with ME/CFS and/or FM, is the question…
Confronting Loss – For me, the holidays bring up front and center the losses you’ve experienced with this disorder. There’s the loss of the person you used to be (and wish you still were) and perhaps the loss of family connections. Confronting a family that hasn’t been supportive, or being so estranged from your family that you’re not going to see them at all, would be difficult. Not being able to socialize, being stuck in the house, etc., particularly rear their heads during the holidays.
The only times I’ve cried during this illness occurred in the first ten years after family gatherings when I smacked up against how much had changed for me. It was painfully obvious I wasn’t that witty and energetic person anymore. Things that had been easy before were difficult and awkward. Those types of losses became much more evident for me during family get-togethers than they were during the rest of the year.
I wanted to find new ways ‘to be’ with my family during the holidays, and that’s what this blog is about.
I went to Karen Lee Richards, Toni Bernhard (the author of “How to Wake Up” and “How To Be Sick”), and Landmark Education to look for ideas on how to survive and hopefully thrive in the holidays.
Surviving the Holidays
Managing Your Expectations and Theirs
Examining your expectations is numero uno of the excellent suggestions by Karen Lee Richards in her “How to Survive the Holidays” blog. Unfulfilled and unexamined expectations can wreak havoc on our emotional well-being. I realized that my expectations of who I should be in family settings still largely derive from when I was healthy.
Is your picture of the ideal holiday get- together setting you up for a fall?
Unrealistic expectations for how a family get-together should look can also lead to suffering. If your expectations of your family get-together resemble a Walton Family holiday celebration, then recognizing that you’re trying to get your get-together to match that picture can allow you to drop those expectations and just be there with your family, warts and unexpected pleasures and all.
You might ask yourself what unreasonable expectations you have for family gatherings.
Your family has expectations that may need to be managed as well. They may still, in the excitement of the moment, tend to view you as you were and then be upset when you can’t be who you were. Managing their expectations beforehand about what you can do and can’t do, any special needs you have, etc. can smooth the way for a better get-together.
The Meanings We Create – the Identities We Get Stuck With.
Toni notes that the identities that we’ve unknowingly assumed often cause problems. These identities can range from ideals (“I’m a hard worker”, “I’m compassionate”) to positive roles (“I’m a lawyer”, “I’m a teacher”) to negative roles (“I’m fearful”, “I’m sick”, and not “my body is sick”), “I’m not strong” (not my body is not strong). Identifying these assumed identities and looking at the meaning we attached to them can allow the meanings – a source of our suffering – to start to drop away, leaving feelings of freedom and relief.
Communication beforehand can help manage others expectations and smooth the way for a upset-free holidays
If your identity is being a great hostess, then it’s going to be difficult to be both happy and healthy during the family get-together. You can try and be the great hostess and be exhausted, or you can not be the great hostess and be upset that you’re not.
Two of my identities include being a ‘smart person’ and being ‘a sick person’, neither of which is very helpful. At some point I apparently decided that being ‘smart’ was the way to survive and thrive in the world. So I’m driven to be smart – and being driven by anything is not fun, plus I’m not as smart as I was -so it doesn’t work as well as it used to. I’m also pained by the meanings I give to ‘being ill’ such as having something wrong with me personally, instead of something having gone wrong with my body.
We all have our ‘identities’; ways of being that we get stuck with. Toni Bernhardt suggests that since we created them, we can drop them as well.
I find this, like most practices, takes… practice, and I’m not particularly good at it. One quick flip through my identities is not going to do it. It takes work, but seeing how you are driven to act in certain ways, and then being able to let that go, can have astonishing effects.
The Envy Trap and Cultivating Mudita
Seeing siblings progress in their jobs and relationships and life in general while you’re pretty much inert (or sliding backwards) can be challenging at family get-togethers. It can make one envious, a negative state if there ever was one, (and one of the seven deadly sins to boot :)). Toni Bernhard likens envy to a ‘poison’ that crowds out any chance of feeling peaceful and serene. She was able to escape from the hold of envy by cultivating ‘mudita’ – the empathetic and appreciative joy in the success, good fortune, and joy of others.
This practice was so difficult for her at first that it took a ‘sheer act of will’; in fact, she reported that it felt ‘fake’ to be declaring joy in the joy of others, but after sticking with the practice it worked. Instead of being envious and upset regarding what she can’t do, Toni’s mind now naturally moves to feel joy at others’ accomplishments. What an extraordinary change in her quality of life she was able to engineer by recognizing envy when it came up and then inserting another thought in its place. Now Toni reports she can literally be ‘flooded with joy’ for others.
I practiced mudita at our family gathering this year (it’s already taken place) and it worked. I was able to switch from being upset at not being able to communicate well to feeling joy in watching others participate and communicate. That shift allowed me to enjoy being at my family gathering instead of being upset.
Taking a Stand
‘Taking a stand’ is a practice I got from Landmark Education that gives oneself a say in how things are going to be. I’ve been taking a stand for ‘satisfaction’; that I’m satisfied no matter what my circumstances are. When conversations in my head come up that don’t comport with that stand, I retake the stand. Toni essentially took a stand for having joy in the joy of others (instead of being envious) when she practiced mudita.
How would it be like if you could bring satisfaction to everything you did and experienced? Is that even possible?
Bringing satisfaction to pain or to poor circumstances seems illogical, but taking a stand for something like satisfaction in the midst of pain displaces the negative thoughts and emotions (‘this really sucks’, ‘this is wrong’, ‘this shouldn’t be happening’) that increase my pain. It does slowly lead to real satisfaction and even gratitude. Taking that stand was valuable in relaxing me during the holidays and allowing me to enjoy being with my family.
There are probably loads of default conversations in our minds regarding illness, many following a theme that we are a ‘problem’ or that we’re deficient in some manner. An alternative stand to those conversations might be that one is valuable, no matter ones circumstances.
Taking the stand that “I’m valuable” opens up new ways and new insights in how to be valuable, and again, it displaces other conversations that produce pain and frustration. Instead of being valuable by being the breadwinner perhaps they listen more closely, or are more empathetic, or express their love more.
Others
Prioritizing and delegating (from Karen Richards) – “List all of your family’s possible holiday activities then ask each person which activity they consider the most important (i.e., decorations, big home-cooked meal, baking cookies, visiting with relatives, etc.). Number them in order of importance. Focus your energy on the things that are most important. For each item on your list, decide: if there is an easier alternative, if someone else can take the responsibility, or if it’s not really necessary. ”
Share the workload (from Karen Richards) – “You don’t have to do everything yourself. Don’t be a martyr. Ask each family member to take responsibility for part of the preparations. If you can afford it, hire someone to help you clean the house. Pay a student to address cards or help you bake. If everyone is coming to your house for dinner, ask each person to bring a side dish or dessert – then you can just prepare the main dish. Don’t be afraid to ask for help. ”
Practice Empathy to Those Who Upset You – trying flipping the anger you feel towards someone and practice empathy towards them. Put yourself in their shoes. Try to get at the commitment behind someones complaint, and then speak to that. From Corinne Blandino – “I remind myself that everyone is struggling on the rocky road of their own rough journey called life. Empathy immediately puts me in a better place, relieving me of the energy expended with anger.”
Simplify and Find Alternatives (from Karen Richards) – “For every item on your “to do” list, ask yourself these questions: Does this really need to be done? Is there an easier way to do it? Try to think outside the box. For every holiday task, try to think of an alternative that would be easier and less stressful for you. Instead of fighting crowds at the mall, do your shopping online or from catalogs. Rather than cooking a big meal, consider having your holiday dinner at a restaurant. If everyone usually comes to your house, ask another family member to host the festivities this year. Be creative and make things easier on yourself.
How Do You Survive the Holidays?
What have you learned about surviving the holidays with chronic fatigue syndrome and/or fibromyalgia?
What do you manage not to overdo? How do you handle being asked (or not being asked) about your health? How do you manage not being able to participate at the level you used to? How do you deal with family members that don’t believe you’re really ill? How do you refresh yourself? Let us know.
I take Bruce Campbell’s online pacing course and this is a question we’ve been discussing there. Setting limits, for those with big families and big sets of expectations, is a huge must for them. My husband and I no longer have family. We had no children and most cousins, all aunts and uncles and parents are dead.
I think the hardest part for me is grieving the loss of the holidays as they were when I was healthy. I was the first up on Christmas morning, loved making special meals, sharing family stories, going to special holiday events.
One tradition my husband and I started last December was a trip to the Keys mid-December, the week before the high rates kick in. We’ve managed to find tiny motels at low prices right on the water and just relax and enjoy being by the ocean, doing one special thing each day (mostly him pushing me in my transport chair). Marathon is only four hours south of us and I lie down in the back to get there and rest totally that night. We found that it gives us our own special holiday that requires no stress, no expectations, just enjoyment. That helps a lot..
Sounds like a wonderful holiday, Pris – just you and your husband – no expectations, just enjoying yourselves 🙂
Sounds like heaven! I unfortunately have a partner with Asperger’s who is unable to understand or have any empathy towards my situation, and a family who don’t believe in ME/CFS. I have printed out the information on practicing empathy towards those who upset me, but having no support really makes it difficult. Wonder if anyone else finds themselves in this situation and has any answers?
Difficult Jane!
I’m no expert but I know all this stuff takes practice, practice, practice.
I’ve been doing the taking a stand for satisfaction practice for 6 weeks now…It started off strong – then after about 3 days faded badly – but then I read how Toni Bernhardt took months to change her mindset using one practice and I kept on – and I’m really surprised at how it’s built over time.
I wonder if there’s a partners with Asperger’s site anywhere? Good luck 🙂
I understand Jane,
Even my emotionally open and loving husband has never really quite been sympathetic. It is hard. He thinks I’m” just depressed” I tell him having CFS IS DEPRESSING! He is at a holiday party without me right now. I have lost friends too that didn’t “believe” me when I kept saying I couldn’t go out so much. Now I just say I have migraines!
Sometimes when my wrists hurt, I wear braces on them from the drugstore for Carpel Tunnel. I get lots of sympathy then! LOL
My best advice is hold on to friends that stick around and try not to be too negative around family. Just rest on the couch and smile and hug them. My tweens always notice when I am in a good mood and appreciate it. They say, “Mom you look so pretty today! I love to see you smiling!” and smiling doesn’t take a lot of energy!
Those are very hard things to do, Cort. The amount of internal change takes much thought, effort and multiple mistakes, and still, in me, the disease will send my brain spinning with irrelevant and generally not positive thoughts. All the ‘what if I had said this better’ thoughts.
My family understands very little and that little varies from one to another, my large extended family as I am a widow who never had children. It is hard to realize how the change that must happen is all from me, how I present myself to the world, to get anywhere near the ability to be happy for others while my own world is in chaos. And not to expect anything in return for that expresson of joy, because that is their task in life, to deal with a sick relative.
Thanks for expressing this in ways more specific than the usual bromides about stay within limits, we know holidays are hard.. Holidays mark years and define relationships, and carry heavy weight for human contact, needed experiences, even as the disease marches on.
Sarah
Congratulations Sarah for your statement reminding us that “the change that must happen is all from me”. This includes all our thoughts.
I’ve recently become able to understood that I choose what thoughts I wish to accept and which are just monkey brain chatter. I’m doing my best to reject the “shoulds” and “musts” of perfectionism. Especially this time of year with so many remembered family traditions. I too have chosen a quiet and tranquil celebration with just myself and my dear husband.
And I love the concept of celebrating others’ good fortune and characteristics. Choosing to think this way frees me from the poisonous stress of envy, and any comments or positive attitudes is appreciated by others. Selfishly, it also enriches me with genuine positive thoughts and goodwill.
Cort’s examples of what thoughts to choose are very apposite for me just now. I shall print and save this post in particular. Like the insightful discussions on my Bruce Campbell CFIDSSelfhelp.org course this post is a great holiday gift.
Thank you all!
One of the things I’ve finally really gotten is that the change really does need to come from us – not from anyone outside, and that we really do have power to be at peace – we just generally don’t realize it. Except for courses like Landmark, practices like Buddhism and religious practices, we don’t get trained in doing stuff like that.
It just SEEMS likes its them – it seems so clear that if they would just change it would all work out. (The truth is we’d find something else to complain about :)). Besides if it is them then we’re kind of doomed aren’t we. Far better if we have the power to be calm or clear in any circumstance.
I agree it takes ‘much thought’ and much work – it really does…
Every day is basically the same for me (since I stopped working nearly 4 years ago). There are no holidays or weekends. I do what I want, when I want (mostly in solitary bliss). I’ve learned to slow down, expect little and do even less (than my expectation). I eat, go out, rest, get dressed, (or not), when I want. If I’ve been awake half the night in pain, I sleep in until I feel ready to face the day.
I lead a charmed life and for some strange reason, every stranger I meet expresses envy at my un-regimented freedom. I have the freedom many only dream about (except for the obligatory medical appointments which have the irritating habit of being both specific in their demand for time and length of consultation). Of course I don’t spoil stranger’s envy by detailing the ongoing physical, mental and financial cost of this charmed life.
I’ve spent Christmas with family & friends, and Christmas alone (and even made the mistake 2 years ago of having it at my place). Last year I was exhausted just from spending Christmas Day at my brothers home in the country (despite them picking me up and driving me home).
They did all the work and I did nothing (except converse). But I’m so used to being on my own, that I found even concentrating on the conversation and making some sort of intelligent or thoughtful reply was tiring. The next day I was exhausted.
I’m going up the country this year again and asked to stay for a couple of nights to save someone the long drive at the end of the day (even though I don’t sleep well outside home base)…….purely & simply because the other 360+ days of the year I do exactly what I like. I figure it wouldn’t hurt to make the effort to be sociable for a couple of days and give family the pleasure of being the hosts. They love it (being the hosts). They love the preparation and the break from their own daily routine. They love the time off school and work. They love the joy of giving and sharing.
Sometimes, we have to recognise that it doesn’t have to always be about us (and others fitting in with our needs & desires).
Sometimes, it just has to be about drawing on our limited energy reserves, will power and positive thinking and allow others to express the joy and pleasure of having us in the same room (ill or not).
Sometimes we just have to make the effort to be in the Moment and put on a smile and be a good guest. If you fall asleep in the comfy chair, so be it. If you can’t keep up the conversation, just smile and listen. If the noise is too much, excuse yourself early and sneak off to a bedroom for a rest or nap. And if you can’t afford the presents or contribute to the meal, just smile and be generous in your thanks……. (without gushing).
And if your family are not sympathetic or supportive, well……..f…….them all, and watch your favourite mushy or funniest movie on your own, at home, and laugh ’til your sides hurt.
Laughter is the best medicine. Sometimes we need a dose of that kind of medicine and wake up the next morning to a fresh new day (of the same old routine). Let’s face it, no two days are ever the same, EVERY minute (of the day).
What helps me the most is to focus on the positive aspects of not participating or not being able to live the life I did before. Because there ARE positive aspects in the midst of horrible illness. Finding these aspects ables me to enjoy the solitude and silence in the dark of my bedroom, while my family and relatives celebrates the holiday without me.
My aspects are: Because I’m ill and confined to bed nobody expects me to cook, clean, go shopping, dress in uncomfortable clothes and shoes, entertain guests, look after the kids, talk to rude or obnoxious relatives, smile when my mother in law sarcastically comments or criticizes everything, withstand uninteresting conversations, go out in the cold and drive far away at night, not knowing what we’ll be served or when we’ll get back home etc etc.
Of course I miss the good times, the wonderful food and conversations, the humor and laughter, the joy and togetherness. But I keep the memories in my heart, enjoying the happiness of my husband and children, and focusing on the positive aspect of being just me, doing what’s good for me, and getting off the stress-and-mess part of the holidays.
Amen! In my case, being single and having all three children grown and married has brought differences in addition to being ill.
I have been telling my co-workers how lovely it is to not worry about pies, or thawing a turkey, or dressing up and driving somewhere, or cleaning the house and getting ready for a group.
Instead, I can focus on blessings and gratitude, and happy memories.
It makes me chuckle to see the light dawn in people’s faces as they realize celebrating doesn’t have to happen in a specific, rigid way. Guess I am sowing the seeds of change, hopefully in a good way.
That’s wonderful PM. That is quite a shift from “I’m alone, I can’t be with my family and that’s really upsetting” to turning your conversation into what you do have. That’s so perfect because we have what we have; we don’t have what we don’t have; better to produce satisfaction where we are than live in upset at where we’re not. It’s certainly alot easier. 🙂
I’m fortunate in that I dealt with some of these first world problems way before I became ill. Most of the problems are to do with materialistic and cultural expectations and real or perceived pressure to conform to these. As someone who uses critical thinking and is spiritually, politically and environmentally aware, conforming to ideals that don’t benefit you, others or the planet is just madness. I wish others would realise this freedom from the tat fest and conformity is actually beneficial to you and to others. Once you start doing it (and I admit it’s not always easy or comfortable), it may just lead to more people opting to do this and we’ll feel less of a fringe movement or odd. It’s a challenge but then so is doing the pressure to buy and do thing. As Victoria said; it brings freedom. Just do it!
I have agonized for years over the holidays – and also a yearly family picnic every August. It has caused me a lot of anxiety, trying to figure out how best to handle each date. Then, right before the big day many times, I would realize that even if I absolutely wanted to be there, the effort involved would be way too much, and I would have to cancel anyway. My absence has caused a huge wave of anger and resentment in other family members, which surprised me when it was exhibited. Some of my siblings refuse to believe there is anything wrong, and believe instead that I am 1) mentally ill and greatly in need of intervention, 2) holding a grudge for years and years and years, or 3) manipulative, hateful, spiteful, vengeful -you pick. My closest friends have a good belly laugh when they hear these.
Last year, the struggle erupted in a few weeks of painful emotional grief, and I found myself really facing all the pieces. I could barely think of enduring November and December alone again every evening. I wrote out my feelings in a forum post, carefully considered the replies, then started writing out what the old me would have done and used to do. The holidays were still rough – but I had a new perspective on just exactly how much had slid away from me, very gradually.
This year I am at peace instead of in pieces. 🙂 I learned how delayed my grief had been overall in many areas.
September 1st, I bought holiday candles and new music and set up fall decor for the first time in years. (Living in rented bedrooms for years doesn’t help with that!) I am in my own small apartment, 18 months now, and feel like I am finally breathing again emotionally. This season, my new way of celebrating, alone or not, is to focus on gratitude and all my happy holiday memories. It has been a delight, and my only regret this year is that the “season” has to end!
I am staying in on Thanksgiving. I intend to broil a nice steak and make a huge green salad. My daughter had asked me to a large family dinner on her husband’s side; as I happen to be dealing with the time change (not good) and new autoimmune symptoms and badly need to sleep every possible minute, I declined. I feel a little sad on missing the fun, but feel no guilt. The kicker is… There is a wave of sympathy from those families that I have never experienced! This is nice, and touching. What a change from constantly feeling obligated and guilty with family of origin. I am done with that.
Building what is positive and ignoring and leaving behind what is not is so powerful.
Thanks Natalie, If I was to look at the commitment behind your families complaint, I would say they really, really wanted you there and then basically acted like hurt children when you couldn’t make it.
I’m so glad you’re at peace now. One thing I learned from EST is that if you’re family is acting like a monster – let them be a monster – and take a wide berth. I’m glad you got out of that situation.
I think of us as your extended family as well….We all wish you a GREAT Thanksiving
Thank you!
I came back on tonight to read your full post through again. There are so many great ideas that extend to coping year-round and filling in the gaps emotionally.
Natalie… I Am going through the same as you with the holidays and an extended family just like yours. Still dreading going to my nieces on Christmas as I have so much fatigue and my families ignorance & games causes me a flare up instantly. I’m glad you were able to work through your feelings of guilt and some how find peace in what ever you do whether alone or with others. Happy holidays & hugs to you! I am so hoping to find the strength and peace to make a decision for my body and soul as you did. Ps I just came across this site doing a search for dealing with fatigue. Glad I did, your post definitely made my night!
Thankfully I’m not a traditional type person and have never bought in to the Norman Rockwell image of life and don’t place too many expectations on myself. I did have local family over for an early Thanksgiving although I’m vegan and kept it simple. Still, I wonder why I do even the occasional thing like this. I think it’s trying to hold on to some sense of normalcy. I didn’t feel well but the family knows the drill so no problem just going to bed. My mom died 3 years ago on Dec 27th (she had lived with me for 16 years) and I did travel for family Christmas the last 2 years but this year I just don’t feel like traveling and it’s fine although I do wish I felt great and could be where the action is, but that’s just not the reality. It may be everyone will be here in town next year and I’d really enjoy that, but it is actually kinda nice not doing much of anything and letting the holiday slip on by. If anyone has a doubting family member, Roger King’s “Love and Fatigue in America” is an excellent book in portraying what living with CFIDS is like, if they’re willing to read it. It’s a great read too, not boring or dry.
Great idea on the Roger King book. I never thought of that. I would recommend giving it to one family would seem open to it and hopefully they will pass it around.
My daughter has been ill with ME for 10 years now of which the past 4 years she has been severely affected. During the early years, we didnt know what she had was ME but she knew that things like family gatherings made her ill and I guess we naturally made excuses as the years went by and attended less and less of these events. If it was deemed to be an ‘important’ event, we would show our faces and would then leave early. This did not always go down well with some of our extended family but our daughters well being had to come first even if we didnt really understand what was happening to her. Since she became severely affected, we have simply not bothered with Christmas at all. We dont get invited to anything and we can’t invite people to our home because of my daughters noise intolerance. For the past 3 years she has had to be fed by NG tube and so food over Christmas isnt exactly something that we feel like focusing on. In short, for people with ME, getting through a typical average day is a struggle and I dont think any of us have the enthusiasum or energy to cope with the strain of dealing with family members and all the other things that come with Christmas. I have to say in all fairness, I havent missed any of it for the last 4 years. The illness changes your perspective on life and things that once seemed important no longer even make it on to the list.
I agree with you Marky. Chronic illness changes your perspective on life totally.
Let’s face it, the current commercialised Christmas celebrations are a relatively new custom in the whole scheme of the last 2000 years (being only a couple hundred years old).
I actually have come to see how superficial some of my old life was.
Thanks Marky – I wish you good luck with your daughter. I wish we had an answer to this…
Although I cope fairly well throughout the year, the holidays can be devastating. When the holidays roll around, my life becomes more about survival than mere coping. I haven’t seen my family in years as they live in distant states and I am housebound. Surviving means doing whatever I can to prevent myself from sinking into a dark depression. I do my best not to reminisce about happier times. I don’t look at old photos. I try to limit my exposure to images of my family’s celebrations. Facebook is a minefield at the best of times, filled as it is with images of other people’s active lives. This year I am considering severally limiting my time with social media. Ultimately, what saves me is my animals. They are constant, loving companions. Caring for them for forces me to look beyond the needs of my body, and helps me cope with the ever-present grief.
Good luck Mary!
I’m so glad you have animals. (I have two dogs).
I wonder if practicing mudita – even though clenched teeth 🙂 – would help.
Toni also suggests repeating things like
May I be free from pain
May I be in peace….
May I be well….
May I be happy…
– small conversations to displace the despair. In my experience over time the help from them can really grow.
I hope these holidays are a bit better!
Thanks, Cort, for the good advice and kind thoughts!
I wasn’t familiar with mudita as a formal practice until hearing about it in your post. It is a sound idea and I will try to be more mindful.
Lest you think I begrudge others their happiness, I don’t ( well, most of the time anyway!). But seeing their celebrations in photos is just too painful a reminder of all I have lost.
My animals–two dogs and a cat–are my saviors. This year was tough, though, as one of my cats died unexpectedly a week ago. Last year my dog died two days before Thanksgiving. And several years ago my husband died a week before Thanksgiving. Needless to say, Thanksgiving and I don’t get along very well! But I am soldiering on. One holiday down, one (Christmas) to go. It is good to know that others understand.
I hope your Thanksgiving was a happy one.
Mary
There’s a wealth of information provided here but each of us most forge a life best suited to us whether any day or a special day like Thanksgiving or Christmas.
I’ve logged up 29 years with this and had no family support except for my eldest son who seems to have a milder version of ME/CFS. Fortunately his family and I live near each other. I lost my husband of 53 years last year so I’ve had a lot to adjust to.
That’s what living with chronic illness is all about. We learn to adjust to so much with chronic illness and then as we age, we acquire so many other ailments on top of fibro and ME/CFS. I’m 74 now and while the early years were torture, I’m now at the point where I don’t care what anyone thinks of me. I do what’s best for me to get thru any given day. I’m very lucky to have gotten over some of the chronic issue that plagued me early on like chronic bronchitis and sore throats.
I used to be quite dizzy and decided to give acupuncture a try some years ago and it really helped to rid me of the dizziness that is virtually gone now except when I overdo or am overwhelmed by life.
I do what I can and rest in between whatever it is I’m doing each day. I have a hobby of making jewelry and I also am the editor of an ME/CFS/FM support group newsletter. Since I spent many years in Information Development during my working years, coming up with a minimalist newsletter is really a hobby and am so glad to help others with information they are too sick to find for themselves.
Some of us are so sick, they can barely function – others like myself can drive and take care of themselves. But it is with difficulty when we live alone but we manage. I am one of the lucky ones than can still drive and for that I am profoundly thankful.
How do I survive Xmas, etc,? Easy. I mostly ignore them. They’re not compulsory.
🙂
Great post! Thanks for sharing, I wrote a post on the same topic this week which you might like to look at http://www.hayleyeszti.blogspot.co.uk/2013/11/a-chronics-guide-to-surviving-next-month.html
=)
I appreciate the ideas and resources Cort, thank you! I value the reminders and great additions to my coping toolbox as they help lessen the emotional burden of this illness!
I discovered a practice called non -violent communication (NVC) that is similar to some of those mentioned, especially practicing empathy. One particular NVC technique has helped me with self and other empathy as well as decisions about holidays. Here’s more detail:
When I first got to the chapter on “needs” in Marshall Rosenberg’s NVC book I had to set the book aside for a couple months. The notion of not only having needs but also meeting them was, well, rather terrifying!
I’ve gotten past the fear and I’m recognizing the value of identified needs! The most beneficial NVC skill for me is having learned to do self empathy first. Identifying what I’m feeling and needing in a given situation results in a release, a lightness. NVC suggests that when we acknowledge our feelings and needs in a situation – give ourself empathy – we can then become curious about other’s feelings and needs and offer silent or verbal empathy to them if we choose.
One method I use for self empathy is to go through a list of feelings, choose 3 or so that fit, and “sit” with those feelings. I then do the same with a list of needs. There is such validation and peace with the accurate identification! One example of this is recognizing my anger and sadness when my need for understanding (of my illness) isn’t met by family or friends.
I’ve found that this relatively simple, but emotionally not always easy, technique helps me with grief and loss, choices, decisions, and relationship issues. As with many life experiences, there are times when I have conflicting needs, like a need to contribute and a need for rest. With NVC I am less likely to be reactive and instead make need -based choices from a place of clarity and awareness which feels empowering!
Hi, Jan,
When you realized you had needs that could be identified and met, along with the fear did it just feel really selfish? I was 35 before I realized that it was okay to take care of myself, and it felt so strange to think of me as a person with needs. A Seinfeld line sums it up well: It was as if I had been living and breathing “No soup for you!” for many, many years.
Taking care of my children emotionally, physically, mentally, and spiritually in loving ways was my way of responding to a lifetime of emotional abuse, and it was a typical reaction of the rigidity of excess (think alcoholism, but matches any similar excesses) to NOT “see” myself as lovable and worthwhile, and to not even think at all that I deserved to rest when tired, eat when hungry, express emotions, or really be myself. It was a total revelation to see that I could have love also, in good, tender ways, even if only self-love and self-respect.
What a journey we are all on, seeing and mirroring ourselves within a culture and context.
Hi Natalie,
Yes, strange and selfish – and Seinfeld nailed it!! And the fear came from the thought that if I took care of my need/s, others might be angry and anger equalled withdrawal of love. Withdrawal of love meant isolation so I stopped having needs at some point!
As I’m writing this I can’t help but chuckle because putting “isolation” in writing led to the thought that in now knowing I’m an introvert, isolation means blissful solitude! 😀 Still need to offer empathy to that inner child scared of abandonment every now and then but I can then honor the me who has come to know herself better and move on. Thanks for facilitating that connection Natalie!
I came to the place of worthiness on a slightly different path, probably the land of someone-has-to-take-responsibility. I certainly relate to the rigidity present those abandonment and responsibility years. I’m SO grateful for the wisdom that came from them. Still learning and finding opportunities to delve deeper especially in this context of illness.
And I agree about this journey – well said Natalie!
After years of trying everything possible to maintain relationships, during the ups and downs, through the false hopes and the deep troughs of despair, during times of renewed commitment to Finding The Solution (when I drove body from a small spot somewhere inside my forehead), after 26 years of feeling lost at sea, I’ve removed myself almost completely from all social events. My phone seldom rings. Blessing and sorrow. But last week during an up moment I agreed to stop by someone’s house for a Thanksgiving toast. Then, tonight I had to call to cancel. I had pushed too hard last week to get to a doctor’s appointment in another city and am now in the downward slide of a crash. Like Alice tumbling into the rabbit’s hole.
The worst part of canceling is not the sickness I feel in my body. It’s not the loss of a few minutes of anticipated holiday cheer shared with friends. As I write this, the worst part doesn’t even seem to be the hard rain hopelessness. It is, instead, the poisonous residue from the phone call I had to make. My bright, energetic, accomplished friend didn’t say anything cruel. She didn’t need to. The pauses in our short conversation and the few kind words of understanding she might have offered but didn’t were enough to call up the stuffed-down pain from years of insulting, patronizing and dismissing doctors, from acquaintances, family and old friends who tend to say nothing at all.
I appreciate all the suggestions offered here, but what I need is a simple script. Just a sentence or two that I could keep on a tablet by the phone to read out loud when I have to cancel the occasional commitment made in a moment of hope. I could write 5000 words about what it shouldn’t include, but I have been unable to write just that sentence or two.
Can anyone help?
I hope somebody can help 🙂
What about, “I’m really sorry I can’t make it this time. My body or my XYZ isn’t supporting me very well just now. I very much want to come/visit/etc but now isn’t good for me. Please do ask me again and hope things will be better next time.”
Hey Spike,
I know this post is way old and Im so late to comment, but I couldn’t help myself! Im very sad nobody responded to you and want to do it for the sake of anybody who will read this, and feel the same way, as I do. I understand how heartbreaking it is to feel the judgment of others so many times that it has become a trauma.
It is totally ok to acknowledge the painful emotions and let them out! Sometimes it can be pretty harsh when you read positive techniques to handle the despair of ME CFS, and are not able or ready to implement them, so you start to feel guilted and shamed about your negative emotions, as if you needed that on top of everything;) Well, it is ok my friend. You probably need to talk about your anger more, and maybe acknowledge the presence of ptsd. Losses due to illness can create ptsd. When you start to realize you have the right to be angry, and take a step back from hurtful people, everything will start to feel better. When you allow yourself to stop hanging out with judgmental friends, which often is a pattern, everything will start to feel better. You are allowed to respond to people and share the way you think about their behavior and judgments in a respectful way. If you are full of fear and unable to do that, you have probably been a way too nice person or a people pleaser and need to start asserting your needs and opinion, even if it’s not easy. This is a process, but you’ll start to feel better once you do it a bit and see you’re not gonne die!;) Hope this helps a little for those who read.
Hi Cort,
I’m so glad to read that mudita practice helped you. I was using it myself yesterday during Thanksgiving here when I had to come to the bedroom.
I just wanted to mention that my name doesn’t have a “t” on the end. I didn’t see this piece until now because I have a Google Alert set for “Toni Bernhard” but you have it as “Bernhardt” But one of your readers pointed me to it!
Your article was very helpful.
Warmly,
Toni
Whoops (no T!) and thanks. Mudita really helped me during our get-together. I wish I’d tried that 20 years ago 🙂
Restorative yoga, lots of sleep, choosing my activities wisely.
Please stop using the name “CFS!”
Chronic fatigue is a symptom, not a disease. I have ME, not CFS.
Until the title CFS is disposed of our condition will continue to be denied, dismissed, belittled and demeaned.
Severely sick patients will continue to be gaslit, ignored and left to rot without effective treatments or care.