This is Lette from Irish Dysautonomia....and I LOVE THIS VIDEO! There is hope for everyone, and some very wise advise in this video, watch the whole thing if you are up for it!
I have had periods of remission as well; and know that food, physical activity, and not becoming depressed by living on the support group boards are all important factors in improving quality of life. Remissions and recovery DO HAPPEN! What has helped me currently in my yucky state of full on POTS/Dysautonomia is trying to help others empower and educate themselves (and myself), and finding BALANCE.
Wishing you all a HOPEFUL day!
--Claire
That's great for Letti.
ReplyDeleteIt really does look like she has EDS - her hyper-mobility is pretty tell-tell. With EDS there is more chance that she may have issues with her POTS off and on. But, the thing about EDS - is not all people get POTS. So, maybe she will just have EDS and not POTS. Time will tell her future. It is encouraging that she is so much better. I do think that her attitude and deciding not to focus on it so much with the forums may be the best thing to do. I've determined that this would be better for me to do also. I've been on a few forums for quite awhile now and when you feel bad - you seem to run back to them. There are others that value what you have to say and the knowledge you acquire through your process. But, this might not be what's best for YOU. I've already started tapering off in my participation - but I know I won't totally stay completely away. But, thinking I will only be on maybe once or twice a week - not as often as I have been.
Hoping for us all to find relief and help. This is such a complex, complicated and fine balancing act of an illness. We do need each other and positive things to focus on. I appreciate that Letti is so enthusiastic and it is very encouraging. For people who are new to their diagnosis - I think the forums are valuable because you learn that you're not alone in how you feel and what you're experiencing. But, for us that have had it for years - maybe, not so good to focus on it as much - especially if we are the ones that will probably have it for life. I've had it for over 30 years and don't anticipate mine to go away. But, mine is complicated with EDS and MCAS issues along with having the harder type to treat with HyperPOTS. Those who get it later in life - there is a good chance for recovery. I'm still looking for my purple band-aid too - I'm hoping for improvements - even in my case. Science is always advancing.
Issie