The thing about chronic fatigue…

Radical illness

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Well, actually there are many things about chronic fatigue. The first is that no one else can see it – you’re not coughing or gasping or limping or dragging an IV drip around so to many people chronic fatigue equates to “lazy bum” . And it’s surprising—at least to me—how many people feel no compunction about letting you know that’s what they think of you.

Here’s the best description I ever came up with to make it have some kind of reality for those who don’t have it: imagine the worst flu you’ve ever had. Think of yourself on the worst day of the worst flu when you’re so sick you’re not sure if you’re going to make it and you want a cup of tea but you can’t walk that far because you have no energy at all. Add in the stage of flu when you’re feeling well enough to get up and finally take a shower and fix a meal but you’re so weak that the shower leaves you shaking so you have to sit down before you can make toast. Put together the overwhelming lack of energy and the shakiness every time you make any exertion (subtract the sneezing and coughing) and that’s what chronic fatigue at its worst is like 24/7.

Everyone I’ve known who’s had it –absolutely including myself—has had a history that made a life of being isolated and cut off unsurprising; so chronic fatigue is generally a perfect expression of emotional issues. Although western medicine is learning more there still isn’t a cure or even agreement about cause and you’re really on your own to find your way out. It adds up to a slow process and what I’m discovering as I get better is that fatigue becomes circular—you don’t do things because you’re tired and you’re more tired because you don’t do things. Exercise is important to recovery but in the early stages it takes everything you’ve got to do it. Later, with more energy, you can get into resistance because the strengthening and chi building exercises are making you better and, I think, on some level, there’s fear of being well and moving back into the world.

I’ve also found that living a quieted down, isolated and inward life becomes a habit. It’s been so long since I had an active social life or said “yes” to life that I’m struggling a bit to shift my mind to a new way of thinking about being out in the world. I’m moving forward but just staying aware that these threads run through the process.

I’m talking about chronic fatigue but I think these kinds of issues are there for lots of people not only with other illnesses but also with emotional issues.  Do you ever get caught up in a circle that keeps you stuck? Do you ever resist moving on to a new phase because the old one has become so comfortable that you don’t want to change? Be kind to yourself if you do. If you’re mindful enough to realize it you can find your way outward and onward.

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16 thoughts on “The thing about chronic fatigue…

  1. This surprised me! I didn’t realise you had chronic fatigue … maybe I missed that in your blogs. I have had CFS/Fibro/Lupus for the last sixteen years and can so appreciate your description of living with an illness that is akin to constantly having the flu!

    In all those years I have had only three weeks of total wellness, without pain or fatigue, and thought it was gone, but sadly it wasn’t.

    I have to budget my energy hour by hour, and even after all these years, I can see no rhyme or reason why I feel fine for a couple of hours and then ghastly. I have followed special diets, taken so many tablets I’m sure I rattle, have paced my life, timed my activities, tried gentle exercise and all to no avail … yet! I’m still not ready to give up the fight – lol.

    I am, I know, very fortunate, in that I am I told I do not have a chronic health mentallity, as I have managed to maintain a positive approach to life, and for that I am exceptionally grateful. I describe my life as small, but that doesn’t mean it is necessarily an unhappy life. In many ways I feel I value life and the good times so much more than many of the healthy people I know, it just has to be in very small doses!

    I have never felt like a chronic patient and certainly not comfortable enough where I am in my illness to want to stay there. In my head I am still capable of achieving everything I want, it’s just that my body doesn’t comply. I must admit as I am heading towards my next birthday I do feel I am running out of time to get back on track, but then I am hoping to live to be a very old lady, and who knows, I may even run a marathon in my 80’s!!

    • I’ve been fortunate I think that everything I’ve tried has made at least a modicum of difference so though it’s taken over 20 years, I was able to stick with it because I could always see a little improvement. It was only the last few years when a couple of diagnoses finally made the base problem clear and I made some decisions of my own about what to do for myself. Way back in the early posts I wrote a couple that addressed health and practitioners, etc. Others referring to cfs and fibromyalgia are scattered through… You can see I had a LOT of trial and error to get to being more or less well. Have faith you’ll find your answer.

  2. I don’t know if I have chronic fatigue, but I do know that there are times when it feels like all I can do to put one foot in front of the other. And I can generally pinpoint the emotional crisis that brings it on. I also find it’s a struggle finding that place between isolation and a quiet life. Since I work from home, sometimes I find myself crawling into a very isolated place. Thanks for addressing this.

  3. I don’t have chronic fatigue, but I understand you’re saying about getting comfortable in a certain space. The other thing that I’ve been thinking lately, is that our culture is not one that understands people who prefer quite a bit of solitude, and so I don’t always accept or honor that part of me that is naturally different. I enjoy reading your blogs because I feel like I’m getting to know someone wonderful without having to leave my home. 🙂

    That said, I too am working on getting out of my house more . . . to have the right balance of solitude and companionship.

    Thanks for sharing your journey with chronic fatigue and life!

  4. Thank you for opening this discussion. I feel like I have found someone who understands what I feel like. I certainly know this struggle and over the years have found ways to manage it to some degree. This past year has been especially difficult for me to have enough energy to do what I want to do. I have judged myself a lot too. I do have skills and tools for self care and to help others. Would you be open to me doing some distance healing in your behalf?

  5. I have had chronic fatigue and recovered because I found a wholistic doctor who looked at all aspects of my health no other doctor was even aware of. I had low amino acids, low in Vitamin B, high cortisol, the bacteria that causes ulcers and candida in my gut. A healthy organic diet, the right supplements, rest (had to go to bed every night at 9pm) even when I couldn’t sleep healed me in a couple of years. I learned so much about health that I’ve been able to maintain a healthy life style. It’s really important to educate yourself in all areas of health. I recommend a book by the physician I had, Dr. Jesse Stoff & Chas. Pellegrino – Chronic Fatigue Syndrome: the Hidden Epidemic. And trust your intuition. I have a friend who had chronic aching throughout her body and it went away when she eliminated sugar from her diet. Wishing you all well.

    • For me it turned out to be about muscle problems so most of the alternative suggestions I ever had didn’t really address the problem until the right practitioner made the right call. So glad you were able to find the right answer for you.

  6. Thanks for be open and sharing about this condition – it seems to be quite misunderstood because you can’t ‘see’ it. I have a relative with CFS and other people’s misconceptions can be very discouraging. It’s great that you are writing about this. If you haven’t already, check out Caroline Myss – she writes about our emotional states and beliefs and how these link disease and may be of interest. I find her work quite inspiring.

    • I have one of her books but it’s been a long time since I looked at it. There’s so much material out there I think part of the challenge for anyone who’s ill on any level is finding the practitioners and the diagnoses and the words of wisdom that work for them. I’m fortunate that I’ve managed to have pretty good instincts about who to consult, what to read (which was how I picked up Carolyn Myss a while back) and which practices or exercises are the ones for me

    • Yes, sometimes it seems to me that people not only judge quickly but these days are much more willing to be rude out loud than they used to be. Thanks so much for checking out my blog!

  7. Hi, yogaleigh. I just read this post, and I don’t know that I’ve ever heard the emotional or physical aspects of Chronic Fatigue Syndrome described so clearly and so accurately. You did the world a service with this post! Thanks

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