Pat, Veronica, Rosie, Lynnwood, Darlene, and Sharen, I read all of your responses yesterday and was overwhelmed with the support I felt from all of you. For some reason I got all teary and decided not to respond until today so I could get my thoughts together. First of all, your support is so wonderful and second of all, I can't tell you how much it means for people to understand what this is like when it is such a hard thing to explain. I tried hard to explain it to my husband, but it's almost impossible to explain it.
Throughout yesterday and after reading all of your responses, I took a lot of time to think and reflect about
what has been going on in my life and why I might be struggling so much with my symptoms right now. All of your posts came at just the right time and Lynnwood, I felt like everything you described is exactly what I have been going through and the things you said especially made me take a long hard look at what might be going on.
I realized that when I started taking prednisone last year and felt so much better, I kind of went full force into life and made up for a lot of time whereI was too sick to do much of anything. It worked okay for a while, but when I started getting worn out, I didn't slow down and listen to my body, instead I became angry at my disease and rebelled against it. This past summer, I especially tried to push through my illness and I rarely rested. I wanted my kids to have a great summer and they did, but I have gradually gotten sicker. I realize now that I was trying to live my life like a healthy person and it was making me sicker.
After a lot of soul searching, I feel like something clicked and I have finally accepted my illness (at least for now). Through that acceptance I realize that in order to feel better and to be able to function and have better health, I need to incorperate rest into everyday instead of fighting it. For some reason I feel calm and peaceful about
this. I also realize that if my plan of resting and taking extra good care of myself doesn't work, then I need to make an appointment to see my rheumy. Pat, you have helped me realize that I shouldn't settle for the feeling of just getting by.
I notice that when I am more rested, these brain problems get a little better, but when I am fatigued or stressed, then all the sensitivities start and the feeling that I'm not myself. If this doesn't go away with more rest, I need to talk to my rheumy. Sometimes I wonder if an anti-anxiety would help with some of this.
You have all helped me more than you probably know with this with your support and understanding.
Diagnosis: UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds: Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears
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