It feels like all the improvements I've made have vanished. I've been practically bedbound for the past week. I've had a lot of stressors the past couple weeks and still have not recovered from the intense round of antibiotics to treat the staph infection. As Murphy's law would have it the infection started to come back late last week prompting a return to the podiatrist. The podiatrist noticed the big toenail on my other foot is starting to get ingrown. Because of my history of developing staph infections quickly he said "we need to pre-empt this one" so I'll be having minor surgery to remove part of my toenails on both toes again. I'll have the surgery on November 30th almost 1 year to the day that I had the last toe surgeries. It's quite discouraging having to go through this again but I can't afford to risk yet another staph infection.
One week ago I was in bed with a mild case of vertigo. I've been having little episodes ever since. Plus at times I feel on the verge of having some sort of seizure. It's a strange feeling. I feel like if I let go I'm going to go into full on vertigo or start having seizures. Both frighten me.
I'm continuing to lose weight. Luckily I had gained a bunch of weight-probably 35 pounds. I needed to gain 20 of those pounds. I've probably lost almost 20 pounds now. I don't have much of an appetite so I'm having to force myself to eat. I feel nauseated most of the time but luckily its rather mild.
I don't know what to do. I can feel Eeyore sitting on my shoulder telling me "what's the point of pinning my tail back on for it will just fall off again." I need to speak with my ME/CFS doctor but it costs a lot of money. Until I get approved for SSDI I'm in a tight spot.
So I'm feeling fairly weepy. I don't know how people who've had this disease for a long time hang in there. I hope I can hang on. Dr. Nancy Klimas at the end of the following video that "now is the time not to give up hope":
For awhile I hung on to those words but with the current decline in my health I'm finding it difficult to hang on to hope. I'm frightened of what's ahead. I'm scared about possibly having a retrovirus like XMRV. Mainly I'm frightened because I'm developing new symptoms and I have no idea what to do.
I've decided to stop the LDN for now just in case that set something in motion. I doubt it but just in case. I think all the stress of late has done a number on my body. My main complaint has to do with my brain. It just doesn't feel well-almost like its swollen somehow. There's the headaches, the sound sensitivity, the smell sensitivity. I'm tired of it. I feel trapped in it.
I'm trying to find my way back to a sense of peace but need new tools. The ones I have aren't working right now. I long for a sense of community but maybe I'll never have that again.
I was doing some thinking about when I got sick. The most serious and debilitating symptoms showed up in 2007 but in 2005 I did acupuncture. The acupuncurist had me do a 24 hour saliva test for adrenal functioning and when the results came back he said to me "I'm surprised you're even functioning." My adrenals were shot in 2005 but I didn't take the test seriously. I was so engaged in writing my dissertation, working, etc...that I didn't have time to not function. It has made me wonder if I've been sick longer than 2 years. Supposedly XMRV likes cortisol so high stress causes it to replicate.
I'm getting dizzy so will have to abruptly stop here. I just wanted to give a little update. If anyone has any suggestions feel free to suggest.... : )
Oh, The Whittemore Peterson Institute has the questionnaire up on their website. Anyone in the world can take it. I would encourage everyone to fill it out as all and any information is useful. Here's the link. Scroll down near the bottom of the page and you will see it.