It's always a pleasure to hear from you Lisa :) I'm very happy you're doing better despite the limitations, but having a full day sounds wonderful! I wanted to reach out earlier but I went back to work 6 months ago and...I have no more energy for anything else. Despite that, it has tremendously helped me to feel mentally better but still, I cannot enjoy my twenties, I hope I can do so in my thirties :P Sending lots of positive vibes and good luck with your novel, I can't wait to read it!
What you describe sounds like one of the big challenges that most of us long-haulers (if we are lucky enough to make a partial recovery) face. How wonderful to be able to work again . . . and yet, if it drains you and takes you to the limits of what's possible, then a lot of loss and stress and heartache must be wrapped up in it, too. I think full-time work would take me to that place, as well. I'm crossing all my fingers and toes that I can make it as a writer, but if not, the plan is to live as frugally as possible and try to manage with part-time work . . . at least until my kids are a bit older or my energy a bit more expansive. Thank you for the positive vibes, Maria. I'm sending them to you, as well!
28 Months into this lifechanging journey. Doing so much better but still so many limitations. Feeling more positive as the last months have seen great improvement, walking more, participating with family, doing household chores🤗 the joy of these simple tasks.
I’ve loved receiving your emails even though I didn’t have the strength to reply or be in touch for all this time since the start of your newsletters.I want you to know that your words have made a real difference for me, often there has been so much recognition, so thank you so much for that🙏
So glad to hear about your improvements. One day at a time. Love from Corinne (Stockholm, Sweden) ❤️
Thank you so much for your words, Corinne! I'm so happy to hear that you are doing better than you were and finding joy in the simple things. Progress, big or small, feels so good . . . especially when it's been such a long time in coming!
Lisa, Are you recovered? If so, was there anything that you credit to your recovery? I am going on two years with no end in sight, so wondering if you have a solution.
Hi, Paul! I am not 100% recovered, but I am back to exercising and traveling and using my brain to do hardish things. I don’t honestly know for sure what to credit my most-of-the-way recovery to, but my best guess is that the combination of time, POTS Management (salt, loads of fluids, and compression), careful attention to rest and nutrition, supplements/meds for MCAS, gradual return to exercise, and avoidance of stress is what’s helped me get to where I am. Starting allegra, pepcid, quercetin, vitamin c, and nasalcrom for MCAS (one at a time, adding each new thing a couple weeks apart so I could track what helped and what didn’t) was the most miracle-like of all of these for me, but I can’t completely rule out the possibility of a placebo effect there.
I hope you find something that helps you to heal. Hang in there. The first 17 months or so were the worst for me, but things got a lot better from there (again, maybe because of the MCAS treatment, but maybe my body also just needed time).
It's always a pleasure to hear from you Lisa :) I'm very happy you're doing better despite the limitations, but having a full day sounds wonderful! I wanted to reach out earlier but I went back to work 6 months ago and...I have no more energy for anything else. Despite that, it has tremendously helped me to feel mentally better but still, I cannot enjoy my twenties, I hope I can do so in my thirties :P Sending lots of positive vibes and good luck with your novel, I can't wait to read it!
What you describe sounds like one of the big challenges that most of us long-haulers (if we are lucky enough to make a partial recovery) face. How wonderful to be able to work again . . . and yet, if it drains you and takes you to the limits of what's possible, then a lot of loss and stress and heartache must be wrapped up in it, too. I think full-time work would take me to that place, as well. I'm crossing all my fingers and toes that I can make it as a writer, but if not, the plan is to live as frugally as possible and try to manage with part-time work . . . at least until my kids are a bit older or my energy a bit more expansive. Thank you for the positive vibes, Maria. I'm sending them to you, as well!
Thanks for the response, sounds like no silver bullet, just time. Hopefully I can get there on day.
So nice to hear from you Lisa!
28 Months into this lifechanging journey. Doing so much better but still so many limitations. Feeling more positive as the last months have seen great improvement, walking more, participating with family, doing household chores🤗 the joy of these simple tasks.
I’ve loved receiving your emails even though I didn’t have the strength to reply or be in touch for all this time since the start of your newsletters.I want you to know that your words have made a real difference for me, often there has been so much recognition, so thank you so much for that🙏
So glad to hear about your improvements. One day at a time. Love from Corinne (Stockholm, Sweden) ❤️
Thank you so much for your words, Corinne! I'm so happy to hear that you are doing better than you were and finding joy in the simple things. Progress, big or small, feels so good . . . especially when it's been such a long time in coming!
Lisa, Are you recovered? If so, was there anything that you credit to your recovery? I am going on two years with no end in sight, so wondering if you have a solution.
Best of luck with your recovery.
Hi, Paul! I am not 100% recovered, but I am back to exercising and traveling and using my brain to do hardish things. I don’t honestly know for sure what to credit my most-of-the-way recovery to, but my best guess is that the combination of time, POTS Management (salt, loads of fluids, and compression), careful attention to rest and nutrition, supplements/meds for MCAS, gradual return to exercise, and avoidance of stress is what’s helped me get to where I am. Starting allegra, pepcid, quercetin, vitamin c, and nasalcrom for MCAS (one at a time, adding each new thing a couple weeks apart so I could track what helped and what didn’t) was the most miracle-like of all of these for me, but I can’t completely rule out the possibility of a placebo effect there.
I hope you find something that helps you to heal. Hang in there. The first 17 months or so were the worst for me, but things got a lot better from there (again, maybe because of the MCAS treatment, but maybe my body also just needed time).