One of the most annoying misconceptions about many chronic illnesses is that you can transcend your symptoms and exercise while sick, that things like physical therapy will solve all of your problems.
This untruth is especially bothersome for people with Lyme disease, fibromyalgia, myalgic encephalomyelitis (MECFS), and other illnesses that aren’t acquired through inactivity or poor lifestyle choices. Take Lyme disease, some of the most healthy, active people get the illness. These people are hikers and fitness nuts who become severely ill and can no longer do the workouts and activities they love. The same goes for people with MECFS. But for some reason, perhaps because people fail to see the stark contrast of these patients’ lives before and after they get sick, there is a persistent belief in society and the medical establishment that if only they started to exercise again they would heal themselves and get back to their old way of life.
People with Lyme and MECFS frequently get grouped in with people who have certain acquired conditions for which exercise can be an effective treatment. But for those of us with severe Lyme and MECFS, treating our illnesses with exercise is like putting middle schoolers in college classes and expecting them to do well, not drop out and be filled with resentment for the rest of their lives.
This is how I feel when someone insists that exercise is a viable treatment for my condition, that it’s actually a good idea to exercise while sick, and I should do physical therapy even though there is an illness still wrecking my body. The problem is: the illness isn’t done doing damage and exercise will only cause more harm. Nobody heals a broken leg by running a marathon. For those of us with invisible illnesses, healing through exercise is pretty much impossible, and probably harmful, especially when our energy is needed to heal, not cause more stress. That is, after all, what exercise is — stress. By going for a run or doing push-ups, or even just stretching, you are putting your body under stress. For some people this stress is a good thing–the muscles break down, heal, and become stronger. But there’s no doubt that your body is doing strenuous work, of which a sick body either cannot do or cannot recover from. A sick body can’t handle the stress of exercise. It’s that simple. And if anyone knows this it’s me.
Before I got sick in 2010, I was a fitness instructor and competitive bodybuilder.
I used to throw weights around the gym like pillows and flip giant tractor tires in my backyard.
But then I got sick and had to learn, stubbornly of course, that exercise was not going to make me better and was probably going to make me sicker the more I did it.
Still, I fought this realization every chance I got. Even when I knew riding my bike was going to leave me curled up in a fetal position on the bathroom floor, I still went out for a ride. I still pushed the metal frame out to the street, swung one leg over the seat, hiked up my pant leg, and pedaled out into the world as briskly as my ailing muscles allowed. I felt the cool sea breeze whipping around my face, I smelled the foliage and saw the bright sun shining across the suburban landscape. But quickly it became clear that my muscles were pretending to be fine, they were trying to do what I wanted, and maybe they could for a few minutes, but then the facade faded and I returned home to find my own personal Hell waiting for me on the bathroom floor.
Every time I went through this vicious cycle of brief satisfaction followed by lengthy misery, I told myself I would never do it again. But I also told myself that it was absolutely worth it. And that’s probably why, despite my earlier and better judgement, I kept doing it.
Eventually my body put my mind in submission. It quite literally stopped going along for the ride. It was done pretending that it could keep up with my active lifestyle. My body just couldn’t work out anymore. I tried to do light forms of exercise, like foam rolling or stretching, but my inexplicably inflamed muscles gave out before I could even start the workout. And now that I’ve been bedridden for three years, even thinking about stretching is dangerous because the margin for overexertion is so fragile I inevitably overdo it and hurt myself.
The other day, for instance, I realized “Hey, I haven’t flexed my arm muscles in a long time.” So I did. I flexed my biceps and boy did I regret it. I slowly twisted my wrist inward and felt the mushy muscle pop, as if to say “Hey, remember me? Why don’t you use me as much as you used to?”
My entire arm seized up and I experienced pain of which I had not felt in a long, long time. The initial pain was probably a strained muscle. This happens all the time to deconditioned bodies, but what separates a sick person’s injury from that of a healthy person, is the debilitation and prolonged recovery. I literally couldn’t use my right arm for an entire day, it was profoundly weak, in excruciating pain, and immobile. The injury had a ripple effect through my entire body. I became nauseous and weak; my whole body throbbed with inflammation. Why? Because I flexed my arm for a few seconds. Unbelievable.
And then there are my past attempts at rehabbing. Last summer I was able to get myself out of bed for the first time in two years. I was even able to stand on my own. Then my health took another dive and any aspirations of continuing to rehab were put on hold. I haven’t gotten out of bed since.
Now imagine being someone who used to lift more than 400 pounds and having to cope with such profound weakness and an inability to rehab. Imagine being anyone with such an illness and having someone tell you that the same thing that just hurt you, the thing that makes you sicker, will make you better.
I can’t even count how many times someone has gently suggested that I try some sort of exercise to improve my health. And every time I resist the urge to go on a sardonic rant. I’ve had people tell me to exercise because my muscles will atrophy (which is true, but when you’re sick there’s not much to do about it). I’ve had people offer to make me workout plans to “get back in shape,” to which I wish I had said, “No thanks, I used to be a trainer, if I was able to exercise I would make my own damn workout plan.”
But the most annoying suggestions come from doctors and other medical professionals. Because they have impressive credentials their suggestions automatically carry more weight, but they can be just as ignorant as laypeople. I don’t think I’ve seen a doctor while I’ve been bedridden who hasn’t suggested I exercise in some form. When I was at my sickest point, barely able to move in bed, a doctor examined me and prescribed a few physical therapy sessions. I didn’t make it five minutes into the first session before I had to stop and nurse an injury. It’s amazing how even the most helpful, knowledgeable medical professionals still can’t resist the urge to suggest physical therapy or graded exercise therapy.
Perhaps these doctors have good reasons, at least in their minds, to believe that exercise is a viable treatment option for illnesses that leave the body so debilitated the patient can’t even sit up in bed. After all, I imagine some version of this is what many medical schools teach, although I’ve never studied their curricula. And then there’s the societal notion that exercise is never harmful and is always a good thing, if not the answer to many health problems. Just take a look at the countless number of studies done about the benefits of exercise on chronic diseases, as if these conditions are dough just waiting to be shaped by the same cookie cutter over and over and over again. I’m sure someone has done a study about the adverse effects of exercise on chronic illnesses, or at least I hope they have. Though, I’ve looked and can’t find any such study. Perhaps it’s been buried by the bevy of redundant studies insisting that the opposite is true.
Personally, if I was a researcher, I would want to think outside the box. Why would anyone want to do a variation of a study that has been done so many times before? Especially when it leads to misconceptions about some very sick people. Just look at the damage that continues to be done by the PACE Trial despite it having been debunked.
Still, I truly believe that most people who think exercise is universally beneficial tend to have one thing in common: good intentions. They care about and want to help sick people, otherwise they wouldn’t even bother making a suggestion. Their hearts are in the right place, but their heads aren’t. Unfortunately, the only way they know how to help is by offering unsolicited advice about something they know little, if anything, about. Even though I wish these people wouldn’t offer their flawed input, I try to remind myself that despite their ignorance, their motives are good. They aren’t telling me to exercise because they think it’ll hurt me, even though, in actuality, it certainly will.
I also try to remind myself that I used to be ignorant about the same thing. I used to be the gym rat, the sweaty guy flexing in the wall-length mirrors. I used to write articles about the best way to exercise on a diet and how more people should do Olympic-style weightlifting. I can’t say what my reaction would have been back then had I come across someone as sick as me now. I like to think that I wouldn’t have known what to do, but I would have been smart enough to acknowledge the gravity of the situation — how sick the person was and that their ailments far exceeded my scope as a fitness expert. But, like so many people who ask ignorant questions and offer unsolicited opinions these days, I very well could have told them the same thing: Just go exercise.
Luckily, my outlook changed. I was about a year into the illness and I was writing an article about working out at the beach. I realized, “Fuck, I can’t do these exercises. What am I doing? Why the hell am I trying to do squats with a piece of fucking driftwood on my back when I can’t even go grocery shopping?”
The realization made me very sad, it still does. I had my favorite thing, the thing I loved to do most in this world, taken away from me. But that’s life. It’s not fair, far from it, but I’ve learned to adapt to the unfairness of my circumstances. That is, after all, the only thing we can do to move forward.
A few things before you go:
1. Thank you for reading!
2. SATURDAY, MAY 12th is International ME/CFS Awareness Day. There are protests and advocacy events planned in more than 100 cities around the world. Please join in. You can find the event nearest you or simply take part in advocacy on social media using #MillionsMissing.
3. I am fundraising to pay my medical bills so if you’d like to help out by buying a shirt or hoodie I would be very grateful!
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It’s hard to hit “Like” on this post. I’m not as gracious as you’re trying to be when you get unsolicited advice. You’re obviously a sharp person with a background in fitness – the idea that you haven’t thought of all this stuff before or that the desire isn’t there is laughable.
There is something about our bodies putting limitations on ambitions. Not only is it humbling, but one learns to respect those messages rather quickly. Of course, there is a lot of grieving involved in that process as well. Thanks for writing about this.
Hi Michelle! It’s so hard to be gracious with unsolicited advice, isn’t it? I probably make myself out to be more gracious than I am. Sometimes you just have to let em have it. Thank you so much for sharing your thoughts!
There is a study being done by an Adelaide University in Australia monitoring activity levels playing Xbox games, looking at ability to increase activity levels and using heart rate monitoring, in ME/CFS. Some patient advocates have been involved in designing the experiment. Hopefully it will show the effects of exertion and lend some evidence to staying within our individual energy constraints. We certainly do need the research to back up what we know from experience.
Hi Lisa. Wow. Xbox games? Using motion sensors? That sounds fascinating. I hope it gets some answers.
Thank you for this. Our company offers “fitness coaching;” based on my health assessment (which I complete to get a discount on my health insurance), they decided I needed a weight loss coach who would call me once a week and chirp at me about exercise. The first question I asked was “What is your expertise and training in management of autoimmune disease, specifically Hashimoto’s?” The lengthy pause on the other end of the phone ended when I said “So, nothing then?” The chirpy person admitted that they had no such training or expertise. I then said that they would be unable to successfully “coach” me, and that any further such calls would be considered harassment.
I used to be able to dance all night, go for miles-long walks, etc. That’s just not my reality any more. I appreciate it when other people tell their stories as you do here.
Sharon: so sorry to hear about what you are experiencing. I have a son suffering from Lyme/CFS and have been doing a lot of research into the link between these conditions with mitochondrial dysfunction and vitamin deficiencies. I came across this article on Hashimoto’s. You may find it interesting and helpful http://www.hormonesmatter.com/adverse-reactions-hashimotos-thyroiditis-gait-balance-tremors/
Hi Sharon, gosh your comment conjured up a vague recollection of someone once asking me how to pick a personal trainer. Many people just blindly put their health in the hands of a random person whether it a doctor or trainer. But really it should be a vetting process. Thanks so much for reading!
Jamison – thank you for sharing your story. My son is suffering from Lyme/CFS, though he and his doctor don’t believe the CFS part, but as his mama, I see it. He has tried the herbal remedies and has now been on heavy antibiotics for about 9 months with no results. It is heartbreaking to see his struggle. So, though he doesn’t want me to give him any advice, and I try to respect that, I am always researching what may help and sharing findings with his wife, who is a nurse. So, it seems you are like my son and don’t want advice, but I feel obligated to share anyway. Please forgive me. There is research indicating that chronic Lyme is linked to mitochondrial dysfunction Don’t know if you have tried a keto/high fat diet but it supports building of mitochondria.
http://salernocenter.com/2017/07/treatment-for-lyme/
http://www.tiredoflyme.com/motherwort-and-lyme-disease-fatigue-and-insomnia-reducer-and-mitochondria-and-heart-protector.html
http://siimland.com/ketosis-and-mitochondria/
Hi Patrice,
No, no, I don’t mind advice at all, but I guess my point is there’s a difference between educated advice and ignorant advice. You have obviously done research and I agree with many of the links you attached. So your advice actually makes me quite happy. You know your stuff! I don’t know your son, but I do know it’s very difficult to be sick and to have so many different people making suggestions. My advice, since we’re on the topic, is try to get crafty with your suggestions. Maybe leave some literature out somewhere that he’ll see it. There’s nothing wrong with good advice, but there’s a right time and way to give it I think. I’m sure he knows you care and love him, but maybe he’s just overwhelmed. Thanks for reading your research!
I totally understand where you’re coming from. I’ve witnessed such thing first hand. It can be very detrimental to some people’s mental health. It’s like you make them feel even more useless. You make them feel as if they don’t want to get better.
When it comes to doctors prescribing PT sessions, etc., it’s because they worry about the after effects. Like you said – muscle atrophy. And as you know, the further you go, the harder it is to come back to normal. So they prescribe it, not to make you miserable, but as a motivator for you to try. They don’t necessarily expect you to go full force, but anything is better than nothing.
Personally, I think we should all want the best for ourselves, and we should be the ones to decide how far we can push ourselves and when. And I think with your background, you know exactly what to do/ what not to do. However, I know people who really don’t care for the active lifestyle and take the opportunity to be immobilized as a “gift” (for a lack of a better word).
Hi. I know doctors don’t want to make anyone miserable, I think I mentioned that somewhere in the post, but they definitely have a lack of understanding of the patient’s perspective. Especially those with ME. It seems many doctors think antibiotics and physical therapy will Solve most problems but then a tough case like ME comes along and those cookie cutter prescriptions only make things worse.
You’re right about the rehab process being tougher the longer you’re immobile. But like I said there’s not much we as patients can do about it. Doctors don’t seem to grasp the idea that a patient might actually be too sick to rehab and might be that way for a very long time — until someone can figure how to make us better. That said, I actually found that when my health began to improve and my body was able to rehab a little it was much easier than I feared. My body made quick progress. One day I could suddenly just lift my legs again. I suspect it was not an issue of muscle weakness but of low blood volume which I treated with infusions. It also helped that I was young. Youthful bodies are easier to rehab.
As for the people who you say take immobility as a “gift”, I can’t say I agree with that. I don’t think anyone wants to be confined to a bed 24/7.
Thanks for reading and sharing your thoughts!
Thank you for your lengthy answer.
And of course, you are right, unless we are “the patient”, we cannot be sure of how exactly that person feels. While PT can help, it can also cause trouble when done wrong (too early/ too hard).
Regarding the immobility, I personally know some people. It’s saddening.
Hi Jamison,
Dr. Ron Davis is my hero at Stanford University. Perhaps you know of him and his story, which involves his son who has the worst case of CFS/ME I’ve ever heard about. Here is a recent article from his research.
https://www.nature.com/news/biological-underpinnings-of-chronic-fatigue-syndrome-begin-to-emerge-1.21721
When I first became sick I thought I was just run down and out of shape. I joined a health club about a month later. It was only 2 blocks from my apartment. After going a few times I realized that instead of getting better I was getting worse. I would walk to the club but could hardly make it back home. So I decided to drive the 2 blocks. i gave it up after about 3 weeks.
My doctor has never suggested exercise which surprised me after reading so many articles about what most doctors suggested. I started doing a lot of research right from the beginning. I was all over the place. I got a lot of bad info and some good. I began to narrow it down. My doctor said there will never be a cure treatment till they find the cause. I figured I may as well take a break because if there ever is a breakthrough I will know about very quickly.
I learned a great deal about Post Exertional Malaise. I fully understood that concept as I was experiencing it everyday. I learned to slowly feel my way, like knowing my limitations. I also realized that not only is my body not responding to exercise but my mind is actually as messed up as my body. Maybe it’s brain fog or a form of depression as a result of my condition. I have no motivation to even go for a walk of even 1 block. I have little motivation to do much of anything except read, play my ukulele and watch movies. I seldom clean, avoid shopping, cooking, people, my art and sometimes even brushing my teeth. I don’t believe Cognitive Behavioral Therapy will help this condition at all but therapy in general is good as it provides a non judgemental person to talk with.
As for the research the most interesting thing I’ve discovered so far was that there is research being done on the non production of energy within the cells mitochondria. Also a lack of oxygen in some cells has been recognized. The people in the study who are the controls do not have these biological behaviors.
Pat
Hi Pat. Ron is great. There are some wonderful people working on this and I hope they break it open soon. I’m not sure if CBT always, or even usually provides a non judgmental person to talk to. I know lots of people with ME, especially overseas who mentioned how judgmental the process felt and how they were ridiculed by someone who essentially knew nothing about their illness.
Thanks for reading and responding!
Your articles are absolutely enlightening, having this kind of viewpoint to be read and understood has ridiculous value to every single person and while I wish you were never in this position to write this, I am thankful you’ve embraced your writing to help educate and make known what is silent for so many. Thanks for fighting in your own way. Thanks for your input, and thank you for keeping on. I’ll be looking out for your next one!
Hey Christian, thanks for your kindness. I wish things were different but all we can do is make the best of it. Thanks for reading, I so appreciate the support!
Another great article! Thanks for sharing it with us. Yeah, I would just about give anything to be able to move about at least a little bit like I used to. Am always trying and then paying dearly for the effort. After 12 years of this you would think I would learn.
Hi Gloria. I think we can only learn so much restraint. Plus our health is always fluctuating so it’s hard to stay diligent for long. At least in my experience. Thanks for sharing your thoughts!
This really resonates. I’m no fitness professional. But the bike. Mine was cross-country skiing. My body will do it so it must be ok! It’s only a mile to the lake. That’s nothing! No. My doctor was really surprised that I could. She didn’t get that yeah, you can (if you’re mild enough at a point), but it’s damaging. 8 months later, I can’t do basic stuff and she’s harassing me to exercise.
Someone telling you to exercise is profoundly ironic in the most absurd and cruel way. That really sucks. Neurologists keep telling me to swim. I love the water more than anything. Twist the knife a little more…
I remember being jealous though. Like, you have all this knowledge, right? You might actually be able to design super gentle rehab. Damn.
Oh, so I have a list. Each exercise plan I did and corresponding activities lost as a result. The stupid thing is I aimed low. Like, they were not exertion at all when I started (except they must have been) and the same exact thing became more difficult. It was the minimal reps of Campbell’s soup curls and wall push-ups that got me stuck upstairs. Then the “ I’ll make sure I flex each muscle once a week.” Nope. Crash. Ugh.
Once they figure this mess out, though, we’re all going to hit you up for rehab advice.
Hi Emily,
Ugh. I’m so sorry you’ve been through similar experiences. I do look forward to doing Campbell’s soup curls with you when we’re all better though.
My reaction would be to congratulate such advice-givers, and ask them when they completed their medical degree, and how hard were the additional three years in ME/CFS specialization. If they are medical professionals (?), skip the first part, and ask them to tell you all about their specialization training, and then QUIZ them.
Should shut some people up. Can be modified for those who are sure their supplement/diet plan is just right for YOU.
I can’t even do the cardiac rehab right now, and it was minimal.
I think some of them went to the medical school equivalent of the law school Michael Cohen attended.
Degrees by mail – fill in blanks, get degree in anything you want – send fee.
Yup, you’re so right jamison!
After 3 major knee surgeries, all on the same knee for the same issue, I totally get where you’re coming from. On all of it, from the well-meaning strangers to the doctors and pt’s who just don’t get it!
I think, the problem stems partly from people not having experienced the issue themselves, (whatever the issue.) You don’t really ever know, until you’re in that position!
They can empathize to a degree, but if it’s not affecting them directly, well, they never really get it!
Hi Lisa. Excellent point. It really does take experiencing something to have true empathy. That’s why we need to infect a bunch of doctors with this disease so they can appreciate it. Haha joking. But hopefully we can still make progress.
Well now I’m all teary and searching for words. The millions missing video is heart heartwrenching, on so many levels. Thank you for sharing your personal videos. They remind me of my son, the gym rat, currently. I know what it took for him to get where he is, the work, the dedication, and it breaks my heart to even think about that being swept away from him. I’m so sorry that and so much more has been taken from you. I have to imagine the videos are difficult to watch, seeing a life that feels out of grasp. I know I find old videos and pictures bittersweet. I love them, the memories, but I miss my life, desperately. I want, need, yearn to embrace life as I once did. I remember my last attempt at exercise, it was a very bad idea but it was brought on my doctors telling me to push. If they only knew how I would fight wild tigers to be able to exercise again. I don’t know if anyone will ever come out and say what horrible treatment and advice we have received. I can’t know that. What I do know is that we deserve better, so much better. Thank you again for sharing your experiences.
Hi. Thanks so much for for your kind words. It is definitely hard to watch those videos. It’s like watching a stranger almost. But I also know it was me and struggle to tell how much of the transformation that I’ve gone through is from illness and inactivity and how much is aging. I’ll probably never know and that’s probably a good thing. Thanks for reading and sharing your thoughts!
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I hope that you don’t mind that I linked to this in my Awareness post today. This is so well-written and honest that I commend you. You perfectly described the damage of those helpful comments we all receive, with an accurate description of the reminder we all try to keep in mind when we’d like to throat chop somebody. 🙂 I wish I had a couple extra spoons I could will to you somehow.
I currently have an upper respiratory infection on top of my condition, from catching something at my last appointment with my dr, and when I called my dr for an antibiotic they referred me to the ER instead. Might as well pick my own body bag and pull my will out before I go there. Those credentials are some of the worst offenders, like you described. Ugh.
Anyway, thank you for the incredible and brave post and hopefully today will be a little less difficult.
Hi! I’m so sorry you got an infection. That’s so frustrating. And some doctors only make it worse. Thanks for your kind words!
Hey Jamison, I have been reading your posts for a while now and really love reading what you have to say. I think I am close in age to you and also was a pretty big athlete before my big lyme/MEcfs/whateverthefuckelse breakdown happened years ago in college.
The grief and anger that comes with losing the ability to exercise is crushing, and not something that everyone can relate to, even within healing communities.
Anyway, you write some gutsy and relatable stuff- with wit and humor to boot. Just showing up and continuing to be honest about your experience is the most authentic, badass thing you could do. So keep it up.
In your own timing, you’re going to come out of this on top.
Hey Gina! Thank you so much for your kind, sweet words and for the encouragement. It really means a lot. I hope, what ever level of functioning you’re at, that your health improves soon. Thank you so much for reading my blog!
Thank you so much for writing this. I know that people have good intentions, but it’s infuriating when I keep running into “professionals” who just cannot accept the fact that not every ailment can be cured with a workout and a perky attitude.
I had such a frustrating experience recently, when I was shuttled off to a new doctor, who proceeded to instantly label me a drug seeker even though I hadn’t mentioned or asked for any medication, then ignored everything I told her about my devastating childhood spine injury, insisted that I had nothing but arthritis, refused to perform any scans or tests, and then sent me off to a sketchy PT clinic where they tried to guilt trip me into doing exercises that were absolutely NOT appropriate for me and ended up injuring me further, then lectured me because “I just wasn’t trying”.
These experts are harming people, and it’s like they don’t even care. I don’t understand why people would go through years of education to become a helper, and then go out of their way to degrade and hurt the people they claim they want to help. It’s so unacceptable.
I feel you on that. I remember a few years ago my doctor had me do a VO2MAX test, except he wasn’t in the room. He was pretty sympathetic to my condition but the exercise physiologists was not, which was weird because the clinic was all MECFS patients and she did those tests every day so it must have just been a paycheck for her. But I remember her egging me on throughout the test, like you can do better and then finally chastising me at the end saying that I still had more energy to give. These people have such a horrible mentality engrained in them. It’s such a shame.
Personally, I’m not into violent exercise. I see people half-killing themselves. There’s a woman I know who’s so high on exercise, it’s as if she’s on speed. She can’t even stand still to talk to you, but jiggles around and does running on the spot. She exhausts me just looking at her, so heaven knows what she’s doing to herself. For you, diet is probably the starting point, which I’m sure you’ve looked into but some foods are so healing and it’s worth doing intensive research to find out things that could help. Yes. there’s a lot of rubbish on the internet and I’d say that any health article written, where someone’s trying to sell you a product, should be viewed as biaised! I swear by pumpkin seeds, which are rich in magnesium, zinc, and omega 3, and seem a relevant combination for you. Exercise-wise, maybe something gentle like qigong might be a possibility for you some day. People should feel ashamed of attempting to bully you into more heavy forms of exercise. Any small achievement, even if it’s lifting your arm a centimeter higher than you could a week ago, is a positive milestone to have passed.
Hi Sarah! Thanks so much for the encouragement. I keep aiming for those little milestones. That’s all we can.
On occasions when I have been debilitated (after C-section, after broken leg and ankle surgery, after removing schwannoma from my spine), I have experienced the same rants: saying I need to try harder. You have identified bullying and incompetence in healthcare.
You have a powerful voice, I read your NYT article and several more on your site, may your life continue to be filled with love from your lady and your mother and your voice grow stronger in every way it is heard.
My question is: how are you writing? You can’t sit up? Or can you now? I am also not sure whether you are getting better? Are you?
Hi Susanna! I write everything on my phone which is set to a black and white screen on lowest brightness. I can sit up but can’t get out of bed. It’s a surreal existence but I manage somehow. I am starting to improve again thanks for asking!
As someone who suffered with ME/CFS for years, and still deals with the pain and fatigue of fibromyalgia, I related to your beautiful and inspiring NY Times article. I’ve devoted my professional life as a psychologist to helping others with chronic pain and chronic illness. I read your comments on CBT with interest.In the wrong hands, especially a practitioner who doesn’t understand that ME/CFS is an exercise-induced (and I define exercise to include any effortful activity, including mental) illness, CBT can be harmful. A relatively new behavioral therapy known as ACT, Acceptance and Commitment Therapy, is much better suited to helping people with pain and illness. Dr. Joanne Dahl has authored several books on mindfulness and acceptance based approaches to chronic pain and illness.
Jamison, I wish you peace and healing and love.
Thanks David! It’s frustrating because I don’t mean to bash CBT and GET, but when ignorant people push them on sick people it’s hard not to over react, especially when it’s happened to me. So thank you for understanding where I was coming from on that. I definitely respect the profession. My favorite classes in college were psychology courses. I will check out Dr. Dahl. And thanks for reading my NYT piece! Let’s keep in touch.
Dear Jamison,
Your story was so beautiful. I’m very happy that the two of you found each other. I work with professional athletes and have seen first hand how hyperbaric oxygen treatments have helped with CTE,PTSD, Lyme Disease, MS and more. I am friends with the owner of Oxygen Oasis outside of Philadelphia. I’m sure she would be able to get you and Shannon some more insightful information on this form of treatment which has been a miracle for so many of their patients. Let me know if I can help.
Hi Craig, I’ve heard of hyperbaric oxygen but never tried. I would probably be up for trying it but I’m bedridden at the moment and can’t travel but I’ll definitely keep it on my list. Thanks for reading my work and caring enough to reach out. Please keep in touch!
Hey,
I have a healing prayer that I can send you that I adapted from the book, The Power of Your Subconscious Mind. Can we share our personal email addresses? BTW, I recommend that book. Many of the pro athletes I work with have cited its theories as key elements to achieving a higher level of function.
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Jamison,
I found your story at a crucial point in my life. I am also suffering from some kind of inflammation syndrome that has made doing simple tasks almost impossible. Here is the kicker, I’m a nurse. I totally understand about the unsolicited advice- exercise( hello, can’t walk) go gluten free, fast. I was beginning to think I was nuts. Thank you for sharing your experiences with the world. More importantly, thank you for reminding me that I am not alone in this.
Bests of wishes,
Brenda