I need to go back on my antibiotics!! In the last couple of days it has become quite apparent that I am really getting sicker and sicker as each day passes. The problem is, and the main reason that I have been on this antibiotic holiday (a little over 2 months now) is because of my systemic, super-yeast problem that I can't seem to get control over. My deadline is June 23, when I see my doctor again. I had hoped that by then I would have taken care of this yeast problem and would be able to restart my antibiotic regimen. That is the plan. However, that date is fast approaching and I'm getting worried. Just when I think that I'm making progress, like, that next day I wake up with a raging case of thrush or a vaginal yeast infection. (Or both...) Yuck! Yikes! I've been taking Diflucan every day, or almost every day now for 2 months, plus 60 billion cfu's of pro-biotics 2x/day. Plus, I just started brushing my teeth with pro-biotics sprinkled in, plus gargling them with distilled water. I read about how that can be really helpful for tough cases of thrush. I'll try almost anything once to see if it works for me. The thing is with treating chronic Lyme, you basically have to try a lot of different treatments to see which ones work for you, since we all have different cases and body chemistries.
I just get so frustrated sometimes when I feel that I've been putting in a great deal of effort and it feels like I'm not getting any kind of payoff. Like, it's just not worth it. I'm already so energy depleted, how can I keep up with all the protocols and restrictions. I feel so deprived! I mean, just having this debilitating disease deprives me of having a productive and meaningful life! Sometimes, I just want to rebel! It's so not fair...
I truly resent healthy, able-bodied individuals who are wasting their life away or not living up to their true potential. It drives me crazy! A lot of people out there take so many precious things for granted. I should know. I used to be one of them. Look where it got me!
Right now, I am sitting here typing at 12am because I needed something to do to get my mind off this headache from hell. I hated to take more Excedrin Migraine after 10pm, since I am greatly affected by the relatively small amount of caffeine in each tablet. So, most likely I will be awake for a while. I used to be a night owl, with my circadian rhythm total backwards. But that was almost a year ago... Now I usually get to bed around 10pm, read or watch a movie or show on my iPod or computer and fall asleep to it, usually by 12am. It's not good for Lyme patients to be sleep deprived or over extended.
So, what can I do? Having a headache like I've had, there's no way I could get to sleep. And it's not just the headache. It's also the back pain, neck pain, bone/joint pain... I did make an appointment at the pain clinic. I haven't been there in over a year, since I had been managing my pain on my own. But for the last few months it has gotten out of control. I can't live like this. It's making me go crazy!
I'm all about symptomatic control while treating Lyme and related co-infections. It's about quality of life. I should be made as comfortable as possible if I am to completely follow my treatment protocol. It's been hard for me lately, since I've been feeling like all the joys of life have been taken away from me or have become forbidden. I'm like an immature child who when is told that they can't have something, I just end up wanting it more. Craving it. Whether that something is sugary-sweetened foods or beverages, breads, carbs, alcohol, cigarettes (or nicotine gum), caffeine, whatever. Tell me I can't have it, and I want it. Even if it's something I'd otherwise not care about.
I'm an observer now. I watch other people do stuff that I wish I could do. Stuff I would be doing if I was healthier. I live vicariously through others, I guess. Maybe that's why I feel so resentful towards those able-bodied people who waste their opportunities. My mom just got a beautiful bicycle... I am so jealous! I would love to ride marathon trips like I used to, back in the day. She said I could borrow it anytime, anytime I feel up to it. It is super light, so maybe I'll have to try it out a bit. I have been walking, for about 15 minutes, at as fast of a pace as I can do, whenever the weather is halfway decent. My dog benefits as well. He loves it! However, I seem to get much more tired than he does. Oh, well. I'm trying. Doing my best.
My goal each day is to do whatever meaningful activity I can do. My activities vary, depending on whatever symptoms I'm suffering with. I don't want my symptoms to get the best of me, I want to rise above them. But that can be quite difficult though. Before I got sick, I was a super active person. I hate it when I want so badly to be active, but my body just won't cooperate. I miss certain aspects of my old life more than you can imagine!
It's heartbreaking for me to hear my ignorant, self-centered step dad spew garbage out of his mouth, words eluding to my laziness, worthlessness, and the like. If he only knew... Unless you are willing to educate yourself about my condition, please refrain from making judgements.
I hate to rant and rave about this and that, how difficult and dreadful my life has become, but that's where I am right now. This is my outlet. I do not want to complain and burden the important people who are close to me; I need them. I need their support. I do not want to push them away, God forbid. But, I've got to get these feelings out somehow or they will sit inside me and become a poison, ready to manifest into something so ugly, God only knows...
I'm in constant, awful pain (of many different types & locations on my body). I'm exhausted all the time. Most of the time, I'm too weak to climb the stairs (16 steps), or walk to the bathroom, or prepare food, or take a shower, or even hold a book or sit upright in a chair! I have constant mood swings, severe cognitive deficits, personality changes, my skin burns, I have night sweats but I'm abnormally cold during the day, I'm extremely sensitive to weather changes (especially low pressure & high humidity), I'm super sensitive to noise, light, & odors, I seem to be allergic to almost everything, I am dizzy and I run into things all the time, I have double vision and other visual disturbances, I have fevers with chills... need I say more?
I long for the day when my life is not ruled by Lyme disease and its laundry list of crazy symptoms. I remember my life before all this... I have to remember how it was before. That's what I'm holding on to. I just want to get that back. Somehow. It's just that this recovery period seems to be taking so long. I'm starting to lose patience. God, how I wish this would have been detected earlier. That the doctors I was seeing years ago when I first started to get sick, that they were more educated in tick-borne diseases. That is why I have become so passionate in educating others in this area. That it has become my mission to help guide others like me to wellness. If I could help avoid suffering to others who have Lyme or think they may have it. If I could help them by giving them resources, direct them to Lyme-literate physicians, offer support or a shoulder to cry on. Something. If I could turn my hellish situation into something positive, pay it forward. Make it meaningful.
With that, I'll close.
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