Just Frustrated!

Welcome to the forum, I am happy to meet you. I know what you mean about having to advocate for yourself in order to find even a tad bit of relief, I am happy to up my relief by 1%. Right now I function at about 30% of my old self, when I am crashing I am at 15-20%. I try different supplements at different times to see if I can find something to help. Last week I decided to try Malic Acid, it has been said to be good for Fibro, but my CFS has been crashing for that same week so yesterday I didn't take it & am doing a bit better. I will wait for about a week & try it again but I kinda think it is a no go for me.

I tried all kinds of diets & found the Adkins was the only one I did really well on & didn't cheat. I love the food & was losing weight so I didn't want to cheat in any way. I lost 40 pounds on it & my daughter, Misty, lost over a hundred. Misty has Mixed Connective Tissue Disease & really needed to get the weight off that she had put on with the illness & Prednisone. I found after I went off of the diet that I didn't feel any better or worse as I added foods back so I have no limitations on that. I used to be bothered by soy quite a bit & stayed away from it for about 3 years, I reintroduced it back into my diet slowly & found my intolerance was gone. Do the things you are doing help you with energy? I wish my body would react to eating differently by giving me more energy. Oh well, we each have to do the best we can.

How I wish I could work, you must be so proud of yourself. What exactly do you do? I dream about my past jobs & still mourn the inability to work. I had to quit due to being so ill & I just wasn't able to do the work anymore. It was a job that I loved & gave me such a feeling of accomplishment, keep working as long as you can. Hang in there.

I hope you come back & post as you have the time & energy. Gentle hugs, Denise

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Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

Today, I feel better. I got the rest I needed.
Thankfully, my work is extremely flexible. I do not go to any office and I don't have a boss hanging over my head. I can take days when I need.
I'm a Building Performance Consultant. I go to people's homes all over the US. Using diagnostic equipment, I comprehensively test for combustion safety, energy leakage, and MOLD.
Mold is actually a huge problem and I know for myself IS a contributor to my illness. Mold does not have to be black and slimy to be toxic. There are 5 different types of toxic molds that live in homes and like ticks have several life stages taking different forms of itself.

I believe the home, the place you live is an extension of oneself. This is the place you go to 'recharge' yourself, where you can just be.
If it is INVISIBLY toxic, then no matter what you do, this toxic place you call home will never let you recover.
50% if the homes in the US are "Sick".
Sick home, Sick body... get it?
So, I can get very busy, in and out of other people's sick homes. For the most part, I can handle it because I use very high grade respirator and filters. Yet, the traveling in itself, drains me. Especially where I stay overnight. In January, I had 4 business trips and an out of town wedding. Too much! One of those trips, I stayed at the most run down hotel I've ever seen. I should have went to a different hotel, but I got there at close to midnight and was supposed to leave at 7 the next morning. The travel schedule can be grueling.

I do this work because I love it. Many of my clients are much sicker than I and I feel that because of my journey, I have a deep compassion for theirs. It makes me want to find the best way possible to heal the home for them, so that they can heal themselves.

Hey, thanks for letting me vent. Yesterday was the lowest I've been in a long time. I just couldn't move. Slept for 11 hours and feel much better. I might have 4 hours to work on the computer, then another nap. :)
Blessed is rejuvenating health.

Lauren

your comments on working hit home with me, so I wanted to respond. I have had CFS/post EBV for a bit over 4 years now. I am almost 52 now, but still manage to work FT. I see this as a way to forget about CFS, and to still engage in a job that I love, and went to college for. The income certainly helps, as CFS is a very expensive ailment to have. I take Adderall or vyvanse, and also taurine and the monthly saline IV. This combo helps me work FT. I also tend to a strict diet which is so hard, but necessary. I also feel jealous when I look around, and see those who can just breeze through their day not worrying about a health condition and can focus on other things all the time. Must be nice. I guess I feel lucky to still be working, but I know I will have to retire early as there is now way I could to this until I am 65 unless a breakthrough happens. I say work as long as it doesn't consume every ounce of energy, and then you have no social life or something outside of work. Not an easy task by any means, but that is where life is at for me right now.