Have you watched the video journals Shannon took? They were so amazingly interesting, really reflecting that wrestling between despair, hope and confidence. What did you get out of them? (HERE is the link: bit.ly/3QB65QM )
I never despaired. I was already without children or grandchildren. And I read as much as I could about ME/CFS. I had a wonderful husband who knew I was ill before I did. I had been an RN, and after reading so many ridiculous comments people said they had been given by the Medical community, plus knowing ME/CFS was not even studied in Med School, I didn’t waste my time. I read what people had done on their own to recover. Mostly, I was so exhausted, I just didn’t care about swimming, etc. I followed one or two people who had been athletes and did what what they did. Supplements, Lumosity and brain games, no need for CBT as I was already on antidepressants and anti anxiety meds for over 20 years. I never knew if I would get better, but I had great hope. My second two years of being bedbound occurred with COVID, so everybody was leading a life similar to mine. So pretty hard to complain. Nobody was going anywhere. RU-vid was my great help. Knowing people did recover was very encouraging. Plus, I did not have Fibromyalgia. My daughter does and she cannot work. I am retired. Big difference.
I got tired of people telling me to exercise because it will help me get stronger!! Nobody except my husband understood exercising didn’t help & actually made things a lot worse!!
We all get that. Look, I guess it makes sense because exercise has so many benefits - if it wasn't for the fact that it leads to flare ups and makes us feel worse, that would be great - right!? Having said all that, when we can find a level of exercises that doesn't flare us up - it can be supportive, but obviously it's not going to make the illness go away on it's own. You just have to ignore people - they often mean well. Check out this video I made about dealing with this sort of thing here: cfsunravelled.com/3-problems-chronically-ill-people-can-avoid-by-stopping-this/
So glad you had a husband who understood. My husband was the same - he knew how active I was, especially for my age ( 61 ) and he watched me going downhill for 3 years until I became bedbound. He took complete care of me for four years. I think if you have someone who knows you very well and how active you normally are ( I was an athlete ), they can see things pretty clearly. The one person I followed was a statewide ( Australia ) basketball player - played 5 times a week - and lifted weights 3 times a week. He kept getting sick, flu like symptoms, and his brother knew there was something seriously wrong. I followed him when I realized it was much more than stress ( that was my diagnosis of myself )
That's true Laurie. There are many disadvantages we may have, but we have to find a way past those and I have seen how people have overcome the most challenging of problems. Focus on what you can do and find ways of working around the things that work against you. You can do it.
Bolton Laurie You are so right. Having psychological and physical support is critical. After being a Mom to 4 kids and a granddaughter, I am heartbroken for the Moms and their children. I have no idea how they cope. One must have someone helping at all times.
So encouraging! Thank you, Shannon, for being courageous and vulnerable enough to share your healing journey! And thank you, Dan, for ALL YOU DO to light and lead the way!
Excellent, Dan. You are a hero for so many of us!!! Thank you. My hearing these stories have been an immense help. I’ve been waiting for a long time to do your ANS Rewire program but have been watching all of your content. You are a true star for us out here🤗🤗🤗🤗 Thank you dear Dan!!!
Amaizing story Shannon. Very happy for you. Dan, thank you very much for all great and unique job you have been doing for all us people who are stuck in this nightmare.
This! 👍 I can so relate to the fact that things ramp up when you kind of getting a bit foreward. The feeling of understanding what is going on but being unable to stop things is so frustrating….thank you for sharing her story and sharing so much knowledge Dan Neuffer!
Interesting about family support. I was 61 when I began going downhill. I just thought I was having major stress ( I was ) but my husband was monitoring me and saw me going downhill. I had been an athlete - swimming was my main sport - and he saw me slowly decreasing my activities. When we went to church and I couldn’t climb the stairs ( I was shocked! ) I realized something was really wrong. I was bedbound from age 64 to 67 - four years. My husband was my caregiver. Most everyone I knew accepted my being ill; all 8 siblings and friends, my four children and my grandchildren. They knew how active I had been. The only one who never accepted that I was ill - my Mom. The lectures I got were exhausting and discouraging. Went on for years when we visited and now with her dementia, she constantly criticizes me for lying down. I am in recovery and know what I am to do. But visiting her has become almost impossible. Very frustrating - bad enough before dementia; with dementia, a nightmare.
It's tricky with people when they don't understand - there is only so much effort that is worth putting into closing that gap. Sometimes we just have to accept that people don't get it. By "I am in recovery" - do you mean you have returned to health now?
@@sherrystewart890 I am so much better. Recovery is very slow and I am not pushing myself. I follow a different group, but it is so encouraging. I see improvement day by day. Do not give up hope!! Follow this group. You see that people do recover, but it is not overnight, so be patient and kind to yourself. I followed other people ( only about 2 ) and that was so helpful. 4 years seemed like a lot, but it certainly makes you appreciate the little things in life when you recover. Maybe I will become an athlete again, but just going for walks is a joy!! Wishing you all the best.
@@CFSUnravelled1 I woke up one day in June/21 - I was 68. And all I can say was that I felt different. Just different. It was hard to put into words. I began to do things that I had not been able to do for the 4 years of being bedbound - just simple things like walking short distances, plus making my own breakfast and snacks ( and tea ). It doesn’t sound like much, but for me it was huge. I felt like I was coming back into the world. Baby steps, really. But I knew I was better. Had I recovered? I believe I had. But I knew that bedrest for four years was going to affect how quickly I would take to return to my pre illness self. It is now October/22. What I do now is a lot more than last year. But I am very careful to listen to my body. Some days I can exercise and go out to do a few errands. But the next day may be a rest day. I am going slowly, and I expect a couple of more years until I am normal again. Will I ever return to my pre illness athletic state? That is a difficult question - only because of my age. I was 61 when I started going downhill and in 2 years I will be 71. The difference in age would not matter much in a young person, but for a senior - well, I can’t say. I will return to swimming, but not to what I was before, in my opinion. But I could be wrong. I’ll just have to exercise, eat well and rest and see what happens.
Hi I had chronic pain, and fibromyalgia to, I had my 3operations, depression, anxiety, over 15year, I have been so tired, sore all my body my head, I was told i wouldn't get better,,
So are food intolerences real ? or just another symptom ? Do we need to eat 'clean' or does diet not matter if we use brain retraining and tell our brain food is not dangerous ? So confusing whether to stick to gluten free, diary free, sugar free or eat normal and not stress out abt diet all the time. I feel like I am reacting to "everything" I eat now. :( Should I go down the rabbit hole of doign the AIP diet protocol. I have AI thyroid disease.
