arrow42 Comments
  1. Edie Summers
    Feb 16 - 5:02 pm

    Thank you for sharing your story. I know it will help others.

  2. Jeanie Pochatko
    Feb 16 - 5:10 pm

    Wow,Jamison, thank you so much for this moving testimony of your journey. You write beautifully. My heart goes out to you and, like us all with CFS, our lives took a real turn down a road we couldn’t have imagined. That said, you are right. Even getting out of bed, getting dressed, even if I only was back in bed an hour later, became a victory for me during my really terrible years with this. I am still very sick, after nearly 30 years (!) but I am grateful for all that my life holds. And it holds so much.

    I am hopeful for some of the research that Cort has been reporting on. We will see a day when this mystery is finally unravelled.

  3. Andrea Pogan
    Feb 16 - 5:53 pm

    Jamison- thank you for this inspiring piece. I’m in that low place now of the ebb and flow of this disease. This is also helpful to me in that I can share it with my adult sons who still do not understand what happened to their mom. Keep writing and getting the word out.

    • Cort Johnson
      Feb 16 - 7:53 pm

      I jumped at Jamison’s story when he offered to write the blog because I think it’s so powerful for people to hear that even this kind of paragon of fitness can get taken down by ME/CFS. If this could happen to Jamison it could happen to anybody.

  4. Sharon
    Feb 16 - 6:05 pm

    Jamison,
    I’m walking in the same shoes as you are, unfortunately. I totally understand your anger and frustration. As a gym rat of over 20 years, I became a personal trainer and worked at a national fitness chain for two years before fibromyalgia & chronic fatigue took my life away. It’s been almost two years already, and I found myself crying in my rheumatologist’s office last week about how much I miss my job. I loved the gym and I loved being a trainer. I’m now very deconditioned and gained 25 pounds. Your story brought tears to my eyes.
    I still hold out hope that one day I can go back to training. Like yourself, I have kept my certification current. In spite of the huge emotional and physical struggle, I refuse to let this thing that has taken over my body win.
    One day we will be back to training again. Maybe not the intensity we once could, but in some capacity. We can’t let this thing beat us!
    Sharon

    • Cort Johnson
      Feb 16 - 7:50 pm

      Hang in there Sharon! As a former big exerciser I’m rooting for you (and me and Jamison). You never know what the future might bring.

  5. David
    Feb 16 - 6:42 pm

    Jamison,
    Thanks for sharing your story. Like you, much of my sense of well being, vitality, and joy were embedded in fitness and athleticism. It is helpful to hear of someone persevering and finding hope in the face of a similar loss.

  6. Tiina
    Feb 16 - 7:28 pm

    Jamison, you are still hot :D

    Thank you for sharing your story, little by little you will go back to great fitness, from the outside it sounds like you were kind of overexerting yourself before, you will be able to push the envelope in a lot of other directions now, please never lose hope.

    • Jamison
      Feb 16 - 8:03 pm

      Tina- That is really kind of you to say, all of it, thank you!

  7. Jamison
    Feb 16 - 7:28 pm

    Sharon, Andrea, and Jeanie, thank you so much for your comments. I’m glad each of you has been able to relate, it is always nice to hear from others.

    • Joey Tuan
      Feb 17 - 9:07 pm

      Thanks so much for your bravery in sharing this story Jamison.

      Clearly this experience has made you a stronger, wiser person, and I look forward to seeing your accomplishments because of, and not in spite of, the disease.

  8. beaverfury
    Feb 16 - 9:57 pm

    Wow. This is a great story to illustrate to non-me/cfs people that even with a desire to exercise and an iron will behind it, our bodies will simply not let us follow through.

  9. Sharon
    Feb 16 - 10:06 pm

    Cort, Thank you for the encouragement. Jamison, thank you for telling my story through your eyes. It helps so much to know I’m not alone with this struggle.

  10. Mary T.
    Feb 16 - 10:58 pm

    Jamison, thank you so much for sharing your story. I’m so glad you wrote it, as I sometimes question whether I’ve brought ME/CFS on myself by not taking care of myself physically – no exercise, overweight for many years, not eating the right foods. When I’m thinking logically, I know this isn’t true, but then those other days….well, you know. My son has stopped contact with me partially based on his belief that I’ve made myself ill by not being a raw vegan and exercising – I wish I could send him your article. But whether it would make a difference for him or not is really unimportant, I guess, since it made a difference for me. Thank you again, Jamison. And keep up your wonderful attitude – it certainly helps the rest of us!

    • Mary T.
      Feb 16 - 11:05 pm

      Correction to the above: “I wish I could send him your article. But whether it would make a difference for him or not is really unimportant,” It should say: ‘is not really
      **important**’ Sorry for any confusion… (can we blame on my brain fog?) :)

  11. Keith G.
    Feb 17 - 8:40 am

    Thank you so much for sharing your story. Your generosity helps build a sense of community for others with CFS/ME and lets others know that our experiences are real and not a made up syndrome. Thanks again. I wish you health and contentment.

  12. tatt
    Feb 17 - 12:09 pm

    overexercising when I thought I’d found the solution to my problems (gluten free diet) almost caused me to become bedbound. I miss the exercise. so sympathise. Excess cortisol, released during exercise, can cause fatty liver disease. Your supplements may also have caused liver problems. If you can get a Fibroscan I’d recommend it, blood tests aren’t that useful.

    Since I began taking NAC and ATP I’m able to exercise a little, although any headaches have me stopping immediately. I’d also suggest get vitamin D3 checked, surprisingly there are reports of athletes having low levels.

  13. Nan Talbot
    Feb 17 - 12:15 pm

    Thank you so much, Jamison, for sharing your story with us. Even if we’re not the athletic types, most of us can relate, I think. I’ve always loved to hike – nothing difficult, just peaceful hikes in the country or on easy park trails, and when that’s gone, along with all other vestiges of our past lives, its tough. I’ve always thought it must be harder for people like you, whose lives were centered around sports or exercise. Can’t say I’ve broken any plates, although I’ve wanted to – ha! – and a whole set, even better! ;) Screaming or crying helps from time to time though, I agree. People who say they NEVER have a negative attitude really irritate me, actually. Its only human to vent your frustration now and then and then get on with finding new ways of making your life meaningful, and that’s what you’re doing. Bravo!! I look forward to reading your book.

    • Jamison
      Feb 17 - 8:24 pm

      Thanks Nan! I like to think we are all athletes in our own way, or at least have the right to be if we wish. Of course, with ME/CFS that philosophy goes right out the window, but it has taught me how to appreciate even the littlest bits of exertion and that really is invaluable. Thank you so much for your kind words, everyone has left such kind and sweet comments, it means so much, it really does!

      • Nan Talbot
        Feb 18 - 11:01 pm

        I’m glad it helps, Jamison! Best of luck!

      • Laura B
        Feb 19 - 8:39 am

        “it has taught me how to appreciate even the littlest bits of exertion and that really is invaluable.”

        I really like this perspective. Appreciating even small amounts of exertion is very helpful to me.

  14. Buff
    Feb 17 - 12:16 pm

    ME/CFS 32 years. Lost my career, many friends, my home, etc. You have learned a lot in 3 years. Keep positive; concentrate on what you have and not on what you’ve lost; find wonderful things you are able to handle. I am still doing artwork at the times I am able, have some new friends and a new home. Life doesn’t begin the day you recover. It’s going on now so we can make every day a good day. Love to you.

  15. Albert Chang
    Feb 17 - 3:36 pm

    Jamison, have you been tested for other Viruses as well?

  16. Kathy
    Feb 17 - 9:37 pm

    Thank you for your honesty in sharing your feelings of somehow being at fault, beating yourself up for it, etc. I, too, have found that to just be with those feelings is very cathartic…I’ve found this type of process to be rather amazing and, yes, it does seem to run in cycles. So helpful to read about your experiences with this.

  17. Vicki
    Feb 18 - 4:17 am

    Very inspirational and uplifting. Great writing Jamison. Telling it like it is, but with a joyous heart.

    If there’s one thing I got out of most of my adult life of chronic pain, it’s patience.

    I don’t have goals in my current life (except to take the perfect National Geographic standard photo) – I live in the moment, with what I have, and ensure I make the most of every good day (of which there are many, now I’m not working).

    Fill your life with negative emotions – anger, jealousy…..whatever……and you’ll never find Peace of Mind or Happiness.

  18. Gijs
    Feb 18 - 5:57 am

    Hey Jamison, did you also suffer from hyperventilation and panic attacks? My first symptoms also includes tachycardy and dizziness after exertion.

    • James
      Feb 22 - 7:15 pm

      I don’t know about Jamison but I had lightheadedness and panic attacks with exercise when I first started coming down with ME/CFS 17 years ago. I was in good shape as well, weights, hiking, biking several times a week for years and was only 25 years old. Then mild symptoms occurred from time to time and eventually there was a point where every workout made me have symptoms immediately and even worse problems a day or two later. Unfortunately I kept pushing for another year or two due to a ignorant doctor combined with my own stubbornness (a really bad combination!).

  19. Francesca
    Feb 18 - 6:03 am

    Jamison…
    I know this too well… At 39 years of age…. I won a fitness age of 18 with 11.4% body fat… then I got ME/CFS…
    Francesca

  20. August
    Feb 18 - 6:46 am

    Jamison, You wrote a very moving insight to your ME/CFS and FM. I found out that I was sick in 2009. I am an Architect with my own business and somehow worked 2009 to dec. 2010 with ME/CFS and FM. It was very hard to carry on and had to close my business jan. 2011.

    I was very fortunate to become a patient with Dr Kimas and Dr Rey here in Miami. My condition got so bad that I was in constant pain, living on pain meds, never remembering anything regarding my short term memory and having several anxiety and panic attacks every day. I have a partner that has been very supportive both emotionally and financially.
    During those years, until recently, I turned to alcohol and smoking to help put me in a dull mood to help with the pain even knowing it would make me feel worse at night-but trying to get through the day. I would even start my day with vodka in my coffee.

    I have been on meds for my nerves and depression, which help to a degree. I was placed on an aggressive treatment of vitamins in 2011 and must say after a year being on them they have been helping.I still have not worked and remain home, sometimes not leaving the house for days as I would panic just driving short distances, but am getting better.

    If you are interested as to what I take regarding pharmacy and vitamins, please let me know, as I would be more than happy to share this with you. I don’t have much contact with anyone that has this terrible affliction.

    Thank you for sharing your story. August augcook@bellsouth.net
    Be well

  21. Holly caddy
    Feb 18 - 11:31 am

    What a beautifully written story’. I am also battling ME/ CFS along with fibromyalgia . I had to retire from a 22 year career of teaching in 2011.just like you, I miss the classroom so badly. I let my teaching certificate expire , so that is keeping me busy for now. I have given up hope as far as the medical community is concerned and planning a holistic approach beginning with acupuncture, yoga and swimming . These things take everything out of me but will help in the long run. Good luck to you all everyone suffering from such a misunderstood illness. I am beginning my blog today and hope to be able to inspire people like you are doing with your story.
    Holly

  22. Forebearance
    Feb 18 - 2:28 pm

    That was great, Jamison!

  23. Lolly
    Feb 18 - 8:09 pm

    Wishing you a big step towards better energy and health. I found slow and easy steps take me further than furious sprints to grab my opportunities. My body signals are my best friends and indicate time to shift. Good Luck!

  24. Greg Burge
    Feb 19 - 10:05 am

    Jamison, you write very well. Your shared experiences are valuable for those of us who are ill and those of us who are not yet ill and even some of us who may have the good fortune to drop dead without ever getting ill. I consider your insight about your emotions to be essential.
    When I was young I set a goal that emotions would flow through my body like water. Getting stuck is too painful.

    Yeah, I am a lot older now (62). I have found that acceptance is necessary to get on with your life since cures are not currently available. Meditation practice is a very good approach to reaching acceptance and clarity. I use yoga to stay loose and reduce muscle pain. There is life and contentment with ME even for us recovering endorphin junkies – I sold my weights and quit the gym although it occasionally crosses my mind as I am wheeling about the house in my power chair that I might plug in my treadmill and take a little walk … well maybe not today.

    You are amazing. I always find it encouraging when I read a story by someone who is getting on with their life and and finding there is a lot below the surface.

    Thank you.

  25. Tisha
    Feb 19 - 3:25 pm

    I was very moved by your story Jamison, thank you for sharing it with us.

    It was beautifully written and so honest and really showed the emotional angle of learning to live with a chronic illness.

    I was also pleased to read that you have, somehow, found some positives from your experience. I had to laugh too when you mentioned that you felt the illness had taught you two important things – moderation and patience. I too have had to learn those lessons, and I was a stubborn pupil who did not take very kindly to them, but I have had to accept that they are part of my coping mechanism. Sometimes acceptance is easier than a battle!

    I hope that you continue to keep your spirits up (apart from the occasional plate smashing episode – I might well borrow that idea!), and that you manage to realise your dreams, in whichever form they may take.

    Wishing you every success.

    Tisha

  26. Graeme
    Feb 19 - 6:51 pm

    Great attitude Jamison. I’ve always thought fitness freaks make excellent patients; we listen to our bodies, have a good understanding of adaptation, and are able to employ extraordinary discipline in order to achieve our goals. I too was working as a personal trainer when PEM hit in 2006 and I had to leave the gym and that active life.

    Nowadays life is not so bad. I’m grateful for what I still have, and I’ve learned so much about my condition that I’m really quite optimistic. You picked the right time to fall sick with this disease. Things are going to get better.

    Looking forward to a brilliant future is something I stick to as well and I don’t see anything wrong with it. Viktor Frankl wrote about this in his book “Man’s Search for Meaning”. He claimed it was one of the most valuable tools concentration camp victims could put to use. Those were the ones with the greatest chance of making it.

    Thanks for the share.

  27. tk
    Feb 27 - 5:13 pm

    Yeah, overtraining was the culprit in my case too. I used to get knocked out 6 weeks at a time with overtraining syndrome before finally keeling over, and it’s now been 6 years. I only wish I knew better to back off back then.

    One thing I learned over the years is that activities with CFS is like athletic training for competition. We are at the very edge of our limits even when we do little things like ADL, and ensuing PEM looks pretty much like an overtraining syndrome within CFS. I also learned that the amount I can do varies exponentially with the intensity, just like in athletic training. For example, I only can walk 500m at 102 steps/min without getting sick. But I can do 1000m at 98 steps/min, and 2000m at 94 steps/min. This is very similar to Olympic skaters who do 5000m at 29-30 sec/lap, but require30-32 sec/lap to do 10,000m. (~5% drop in intensity results in twice the distance).

    Taking queue from this insight, my “training” these days look pretty much like yours: stay well within my limit and do things in short bursts like what athletes do in high intensity interval training. (Running errands on public transit seems particularly good, probably because it consists of walking a few hundred meters at a time and then sitting in a subway or bus and then repeating.)

    Anyway, I wish you luck with your recovery and looks like you are on the right track!

    • Cort Johnson
      Feb 27 - 6:00 pm

      Interesting TK. I found that I was able to build up my stamina when I was bicycling quite a bit but I paid for it in fatigue and pain. It was weird to watch my muscles get bigger and stronger while I went on longer and longer bike rides (and got wiped out more and more afterwards.)

      I think shorts bursts is the way to go.

      • tk
        Feb 28 - 8:12 pm

        Yeah, I think doing it in short bursts is definitely in order if you are doing a high intensity activities like biking or weight lifting. I used crap out the next day when I was doing 6 reps of 10 lbs weights. Reducing it to 4 reps of 12.5 lbs worked like a magic. Not sure if it is applicable to lower intensity ones like walking, but I’m planning to incorpratee faster 100m walk x 4 into my 2k walk when I resume it in the Spring. (I believe that’s what Dean Anderson did when he started to jog). I’ll report back in the fall :-)

  28. BEJ
    Feb 28 - 8:39 am

    Thank you for writing this Jamison,

    I think it will help many of us dealing with the guilt that we sometimes feel with this illness. Being told by doctor’s that are symptoms are not real and we “just need to get out and exercise more” is obviously not helpful and is proven wrong by your story. Who is more motivated than a guy like you?

    My symptoms have improved over time and I went form not being able to walk down the street without heart palpitations to being able to run a mile and work out for an hour or so at the gym (although I did have to sleep for the rest of the day) and I have been able to return to work although the brain fog makes things difficult. Although my expectations in life are significantly lowered, I still appreciate the fact that things have gotten better for me.

    I hope they do for you as well.

  29. Lauren R
    Mar 01 - 2:20 am

    Hi Jamison

    My name is Lauren. I just finished reading your post. I also have CFS. I can really relate to your situation. Before I came ill, I was a competitive figure skater and trained for at least 5 hours a day. I understand how hard it is to let something go that you have a passion for.

    As you can see I have attached the link to my Facebook page. If you’re not married or don’t have a girlfriend I would like to get to know you better. You sound like an amazing guy and you are very handsome :)

    -Lauren

  30. Justin
    Mar 01 - 7:17 am

    Jamison, I’m lying here just read your story almost in tears. I can relate to your story 100%. Loosing your health when you are so active is like loosing your masculinity, your whole purpose of being a male. You do have to totally change your philosophy on life to survive and to recover. Before my crash I was a competitive rower and cyclist along with drinker and socialite. I’m now seven years down the road and have found the replacements in life that you spoke about. I now teach people how to row and cox races. Sometimes I can get out in my small skiff with my dog and have a row myself, always keeping my heart rate to below 130bpm. I love the peace and quite I find once I’m out at sea.The smaller things in life get me going now, not the male ego stuff that once worked. I hope you recover to a level of activity that you can find contentment in. The book venture sounds interesting, can’t wait to read it. Take care.

  31. Bobbi S.
    Mar 26 - 9:25 pm

    Jamison,
    Thanks for sharing your story, if you will. It’s “nice” to hear from other people who are passionate about sports diagnosed with ME/CFS. I can so relate to your words. My motto is: “Do One Thing!” Sometimes you just have to do one thing, even if that is just somehow getting out of the bed. I hope we hear more from you in the future….

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