Neither my husband nor I are 'cured'. But when I think back to where we each were at our worst, I can't believe how different it is now.
My husband has had different lows...a few years ago his GI system was so trashed that his IBS-D prevented him from leaving the house for months...he literally had to be within a few seconds of a toilet at any given time. He was pretty much reacting violently to everything he was eating, even chicken broth. It was such a desperate time...I was reading, reading, reading everything I could to understand what we needed to do to help him. It felt hopeless. When he started vaping pot, his IBS-D got much better - he still had to avoid eating and drinking certain things that would trigger him, but he could leave the house. And later on, after doing a serious probiotic protocol he can pretty much eat/drink whatever he wants with no reaction. I'm still amazed everyday at what a drastic improvement he made with that. I can't believe he's the same person.
When we lived up north, his autoimmune arthritis in his knees would be so bad that he'd be unable to walk for 6+ months out of the year. That was excruciating...eventually, I decided to make a list of all the times he'd had these flare ups to find a pattern...and a huge pattern was starting us in the face that we'd never realized. His attacks were always in the winter. So, we figured it must have to do with the weather, and we uprooted ourselves and moved across the country to Florida. And miraculously his arthritis stopped flaring up for 3 years and he could actually walk the whole year round! Unfortunately, as the knee got better, the CFS got worse
I think his immune system just really has it in for him.
And a few years ago, during another low he started getting these sudden intense adrenaline attacks out of the blue...he'd wake up in the middle of night to use the bathroom and it would kick in...sometimes he'd be sleeping and a panic attack would wake him up. He had to take Xanax 24/7 or else he'd start getting a really strong panic attack and felt like he was dying. I couldn't leave him alone at all, we even went to the emergency room when during one of these attacks he felt like he was asphyxiating. This went on for months. We were desperate, we felt like we'd tried everything, he kept getting worse, he even had tests runs to see if he had some kind of cancer that was causing this, but every test came back normal. For a while we thought he had a parathyroid problem, but that was ruled out, too. There seemed to be no solution...and then he started taking Mutaflor probiotic and his panic attacks just slowly stopped. It's inconclusive, but he feels the Mutaflor had a big hand in improving the panic attacks.
We later realized that part of his problem was likely his dysfunctional vagal nerve getting activated any time there was a drop in BP (when he'd get out of bed) or blood glucose. We also learned that he has a SNP that makes his MAO system really inefficient at breaking down adrenaline, so once it gets released it circulates in his system for way too long. He got really strict with keeping his blood glucose in check and avoiding sudden drops in BP and over time, those panic attacks mostly stopped. He's still prone to having too much circulating adrenaline, but we know how to deal with it and mostly avoid it...
I think back on those times and I remember how desperate it felt to be incapacitated and just not know what the next step was...and even though now he still has to be careful and use pacing to avoid PEM, many days he can still do something that he enjoys....lately it's shooting at the gun range. Yesterday and today he's been brewing beer. Last month we took a short but ambitious road trip for his birthday. When he was at those low points, it was hard to believe it could get better. I try to remember that on the bad days. Just as mysteriously as these problems appear, they can disappear.
For me, there were days my fatigue was so profound, that I couldn't bear to walk from the couch to the kitchen to get something to eat. I would have chosen to slowly starve to death had my husband not been there to bring me food. Now, I can usually go grocery shopping and run errands, and I am usually the one cooking most meals, and I've taken on the role of researching the next health experiments to try since that was previously my husband's job and he got a bit burned out. And I'm working part time from home, which makes me feel really good about myself. I still have to keep checking in with myself about my energy level and whether I need to rest or not, I still need to do about half the things I wish I could get done, but even with my limitations, I feel like a functional person who can enjoy life. Some days it's easy to focus on the fact that I can't do what I used to...but when I think back to how bad I was, I realize that I am doing so much better than I thought possible, and I am able to appreciate so many things that before I would have taken for granted.
We usually take 25-35 minute walks after dinner. Sometimes we need to skip them, but most nights we manage it. There were periods of time when these walks were completely out of the question. Even now, we have to be careful not to push our limits.
