I want to apologize. I wrote "To be or not to be?" Well, I am a total fraud. I am wearing it....all of it, in my flannel pajamas and the tears that keep pouring down my face. I was better then and God, isn't it easy to throw out there how one should be like this or that? SHOOT ME.
Having said that, this illness hasn't ruined my life yet. I can't say that. Even if it's true. I will not let this illness have that much power. I am too angry and I raise my fist at it.
After the 1200 mg. EDTA IV and the crazy 93 degree weather we had, and now being due for my monthly bill, I am sick. I am also thinking that the Kefir, which I love a little too much is making me sick. Dare I be so bold as to say that my intestines are really cleaning out. It looks like I gave birth to a snake! Everyday. This is rare. But, my intestine hurts and I am wondering if I should stop the kefir. Another thing I am trying that might be making me sick.
Sorry for the "too much information."
My CFS friends have advised that I need to accept where I am at right now and rest and stop trying to do so much. They are not being mean, but knowing me, watching me and seeing a pattern. It's true. And I have to do that. Because I keep getting sick and when I feel better, I immediately rush out. I need to stop it. I am not used to this territory. This half dead territory. I was able to push myself and part of it is loving my job. I love making jewelry and then it pushes me to sell it. I am so thankful to have a talent. That is the one blessing I am so happy about. I got an email from a woman last night who bought a very expensive piece. She just wanted to take the time to let me know how much she loves it.
The truth is, I sound positive and sometimes I am, but right now and many times I am at a low point. I can't keep up with "normals" and there are two guys that are interested in me. It is throwing me off and causing PTSD. Last year, as many know, I was in a relationship that was taxing to say the least. I was quite sick and he didn't get it. Most don't. What I have, which is even worse than CFS is Interstitial Cystitis. It came about after the CFS though, so it's related. I had CFS for years with no IC. I was in a relationship for 7 years with no IC.
For those who don't know what IC is, it is a swollen bladder where you have to urinate all the time. My bladder has ulcers in it. My ex was the first guy I had been with since the diagnosis of IC. I never knew, until him, what it was that I was dealing with. Everytime, just about, that we had sex, I would develop an infection. Sometimes I would urinate blood. I began to become frightened of sex. It was awful. He wanted sex all the time. I was becoming so sick from sex. The infections would cause my ears to ring, my CFS to completely blow up and my fibromyalgia to become worse. I started to feel worthless. I tried D Mannose with no luck. Then I had to take an antibiotic, just one pill with sex. But the whole thing was so traumatic for me....having to wash before, after, have him wash. It ruined it. The fun was gone. It became a chore for me. I remember when it used to be fun. I wanted him to just back off and be with me...without the sex but once a week. No can do. He "needed" it. It was a real eye opener for me, a year ago, to have IC and to realize...."wowwwww...what is this?" Another loss.
I have been grieving ever since. When we broke up, he told me that he thought I was a sexual person, and I am, but I am unwell. It makes me not want to go there with anyone again. Maybe I am too sensitive, but when I think of all of the negative things that have been said to me over the years by men, I just feel like why bother. I need a guy to worship me at this point and even more so, I need to worship myself and I don't anymore. That is the illness talking. I am too weak to worship myself right now.
And I sit here and the one thing that I always wanted, like most people is a love. Someone to love and be loved by. But even if they came into my life, I am too sick. I am in bed mostly anymore and I am having a hard enough time taking care of myself. But how I grieve for it.
For some reason, it consumes me. I don't know why. I have been sick since I was 18. It didn't consume me in my 20's or even 30's. It's only been the last 4 years that I have really come to obsess about a partner.
Maybe it's because my sister and father died and my mom is so ill. Maybe it's because I will be 40 in September. I don't know.
I do know that I am tired of this illness. I am not like most people on here who believe there will be a cure sometime soon. Due to having this for over half of my life, I gave up on that thought. They think it's this, they think it's that...I don't know.
Anyway, I want to apologize for being such a know it all in my last blog. What do I know?? Right now I am in my pajamas in bed, looking like death with my laptop on my lap. This is what I have energy for today. That's it. I am officially wearing my illness. Sometimes I am better, going to the movies and dinner and sometimes I feel like I am dying. I need to accept that this is where it is right now and rest. Let myself rest and feel what I am feeling.
This too shall pass....I hope.
Having said that, this illness hasn't ruined my life yet. I can't say that. Even if it's true. I will not let this illness have that much power. I am too angry and I raise my fist at it.
After the 1200 mg. EDTA IV and the crazy 93 degree weather we had, and now being due for my monthly bill, I am sick. I am also thinking that the Kefir, which I love a little too much is making me sick. Dare I be so bold as to say that my intestines are really cleaning out. It looks like I gave birth to a snake! Everyday. This is rare. But, my intestine hurts and I am wondering if I should stop the kefir. Another thing I am trying that might be making me sick.
Sorry for the "too much information."
My CFS friends have advised that I need to accept where I am at right now and rest and stop trying to do so much. They are not being mean, but knowing me, watching me and seeing a pattern. It's true. And I have to do that. Because I keep getting sick and when I feel better, I immediately rush out. I need to stop it. I am not used to this territory. This half dead territory. I was able to push myself and part of it is loving my job. I love making jewelry and then it pushes me to sell it. I am so thankful to have a talent. That is the one blessing I am so happy about. I got an email from a woman last night who bought a very expensive piece. She just wanted to take the time to let me know how much she loves it.
The truth is, I sound positive and sometimes I am, but right now and many times I am at a low point. I can't keep up with "normals" and there are two guys that are interested in me. It is throwing me off and causing PTSD. Last year, as many know, I was in a relationship that was taxing to say the least. I was quite sick and he didn't get it. Most don't. What I have, which is even worse than CFS is Interstitial Cystitis. It came about after the CFS though, so it's related. I had CFS for years with no IC. I was in a relationship for 7 years with no IC.
For those who don't know what IC is, it is a swollen bladder where you have to urinate all the time. My bladder has ulcers in it. My ex was the first guy I had been with since the diagnosis of IC. I never knew, until him, what it was that I was dealing with. Everytime, just about, that we had sex, I would develop an infection. Sometimes I would urinate blood. I began to become frightened of sex. It was awful. He wanted sex all the time. I was becoming so sick from sex. The infections would cause my ears to ring, my CFS to completely blow up and my fibromyalgia to become worse. I started to feel worthless. I tried D Mannose with no luck. Then I had to take an antibiotic, just one pill with sex. But the whole thing was so traumatic for me....having to wash before, after, have him wash. It ruined it. The fun was gone. It became a chore for me. I remember when it used to be fun. I wanted him to just back off and be with me...without the sex but once a week. No can do. He "needed" it. It was a real eye opener for me, a year ago, to have IC and to realize...."wowwwww...what is this?" Another loss.
I have been grieving ever since. When we broke up, he told me that he thought I was a sexual person, and I am, but I am unwell. It makes me not want to go there with anyone again. Maybe I am too sensitive, but when I think of all of the negative things that have been said to me over the years by men, I just feel like why bother. I need a guy to worship me at this point and even more so, I need to worship myself and I don't anymore. That is the illness talking. I am too weak to worship myself right now.
And I sit here and the one thing that I always wanted, like most people is a love. Someone to love and be loved by. But even if they came into my life, I am too sick. I am in bed mostly anymore and I am having a hard enough time taking care of myself. But how I grieve for it.
For some reason, it consumes me. I don't know why. I have been sick since I was 18. It didn't consume me in my 20's or even 30's. It's only been the last 4 years that I have really come to obsess about a partner.
Maybe it's because my sister and father died and my mom is so ill. Maybe it's because I will be 40 in September. I don't know.
I do know that I am tired of this illness. I am not like most people on here who believe there will be a cure sometime soon. Due to having this for over half of my life, I gave up on that thought. They think it's this, they think it's that...I don't know.
Anyway, I want to apologize for being such a know it all in my last blog. What do I know?? Right now I am in my pajamas in bed, looking like death with my laptop on my lap. This is what I have energy for today. That's it. I am officially wearing my illness. Sometimes I am better, going to the movies and dinner and sometimes I feel like I am dying. I need to accept that this is where it is right now and rest. Let myself rest and feel what I am feeling.
This too shall pass....I hope.