Hi
@Sallyagerharris, Get some coffee it's a long one !
First I want to thank you for your kind wishes ! I am happy you are feeling a little more level for now and I understand the anxiety and worry about feeling worse.
This is such an awful way to live. Having our power and health taken from us is just infuriating and the struggle to make the medical community understand is just more salt in the wound.
I had to learn a lot of 'tricks' to get me through life for the last 30 years. I was bedridden for almost 10 years when I was first hit with CSF . I kind of leveled out too and could go to work, life was still hard, lots of fatigue and funky brain fog but I could function with some thoughtful planning.
Now jump forward... I went back to being bedridden 5 years ago to now after the RTX being pretty active, I walk in the forest for about 2 miles.
I try to do this everyday. I am very pleased that I can get dressed, put on jewelry, and makeup. Before I was so sick I didn't care how I looked and even if I did I couldn't lift my hairbrush, I could hardly shower.
I know I am feeling better because I was able to muck my closet out ! ....this has always been my marker for how I am doing. lol (Sorry guys, it's the little things like hair , make up and clothes I am enjoying.)
I notice I don't have to prioritize like I did before, I can actually get up and go without 3 days of preparing for that outing. In my book this is huge because I have had that barrier for 30 years.
The brain fog used to be such a problem that it was beyond difficult to even pour a cup of coffee in the morning, putting the cream and sugar in it was hard. The brain fog was so debilitating. I don't miss that at all !!
My fatigue is almost gone, I think actually it is gone, I am 61 years old and I believe this is how a 61 year old feels. Unfortunately I am not going to feel like I did when I got CFS in my 30's. Too bad I lost all those years, I think part of me thought when the CFS went away I would feel like I did in my 30's, I thought I might pick up where I left off !
Another big improvement is I don't NAP ANYMORE
I noticed I am not strong enough to go to 3 stores in the same day and after shopping I am pretty tired, this may or may not improve. But hey at least I am
going to the store ! To look at me now you would not know I have anything wrong with me.
I am able to take many calls everyday. Like when I was first hit with CFS I could not talk on the phone and this started up again two years ago, one my voice was so weak and two after one call I was half dead for days. I have never been depressed or on any meds for that so emotionally I feel the same.
I am currently struggling with GI dysmotility, and on a feeding tube using a central line. My autonomic system crashed but even that has improved, I am on less medications now. I was getting IVIG every two weeks NOW I get them every 3 weeks !!!! (insert happy dance)
I think my health issues that began when I was 27 years old has been
1. just bad luck and
2. a perfect storm if you will - Autoimmune diseases run in my family.
I am hopeful you can remain at your current level or better yet that you wake up one morning and feel normal.
I am here and happy to share my journey........... Wishing you much better health !
Big Hugs,
Rebecca