May 19, 2011
I don't have a question per say so it seems more appropriate to journal this than to post it in any of the forums.
I am extremely frustrated with my health. I hope that by writing out some of what I experience, how it affects my life, and how it makes me feel, I'll be able to improve my perspective and strategy going forward.
I've been dealing with chronic illness for a little over four years. I do not have a well-defined or straight-forward diagnosis. Though controversial, the best explanation for my illness is that I have chronic Lyme disease and co-infections. Because of my symptoms, I can also be described by the syndromes of chronic fatigue and fibromyalgia.
I have been treating the LD for about two and a half years, taking combinations of oral antibiotics. I also take a number of supplements. Before I start ranting about how awful I still feel, I should make clear that I have improved a great deal as a result of this treatment. At my low-point, before I was diagnosed, I was 29 years old and only able to work part-time (under very special and forgiving circumstances; I would have been fired in an ordinary situation). I thought it was inevitable that I would lose all ability to work and care for myself, as I had been gradually declining. After 10 months of treatment I was able to resume full time work (though it was not easy), and since then I've achieved significant professional successes.
So why am I so frustrated?
I consider myself to be a case of "walking wounded," meaning that I can plod on through the day but I'm carrying a heavy burden along the way.
My symptoms tend to change over time, and I am often not able to assess my situation until sufficient time passes and a pattern emerges. When I look back at the recent past months, I'm really annoyed with the pattern that I see. I am going to leave out a lot of details about my daily "baseline" symptoms, but suffice it to say that I have a host of problems from joint pain to neurological issues. None are disabling in and of themselves and I've largely grown accustomed to them. Many have gradually improved with LD treatment.
The pattern in my health that has emerged over the past few months has me concerned in terms of how my energy and stamina wildly fluctuate throughout the day:
I can often sleep through the night and wake up in the AM and often feel somewhat rested. (Previously in my illness I could only sleep in short shifts and I would wake up exhausted.) I rely on coffee to get me going, and religiously drink about 6 cups of it first thing. I am (unhappily) obese, so after breakfast I go to the gym at least 5 times a week for 45-60 minutes of cardio. I've never seen someone else my size workout as rigorously as I do, I usually soak through my workout clothes. Immediately after exercise I often feel pretty good, physically, emotionally, and mentally. Then back home to shower and go to work.
I try to work as much as I can as soon as I arrive at my office, as I am at my best in the morning. On good days I start out strong and get a lot done right away. Other days it is a struggle. But either way, I inevitably "crash." Sometimes it's as early as 10-11 AM, other days I might manage until 2-3. I get in around 8 AM, so obviously my productive window is short, if not very short.
When I "crash," it is often a sudden onset feeling of overwhelming fatigue. Not an afternoon yawn, but an almost instant feeling of heaviness and aching. My concentration and focus gets blown to smithereens, and my speech slows and I have trouble "keeping up" if others are talking. I can't sit up straight under my own (admittedly large) weight. When I go to walk in this state my legs feel like they are in cement and I feel slightly off balance. Sometimes the widespread muscle pain is so bad that I literally can not tolerate to sit at my desk anymore, and as such I sometimes have no choice but to leave work. "Sometimes" can range from 1 to 5 business days a week. (In other words, I sometimes leave early every day of the workweek.) If I am able to stay until 5 or later at work, I'm often just propping myself up and not being effective in what I do. No amount of coffee will get me out of my afternoon crash, so while it helps me in the AM it is useless later in the day.
Typically I do not recover from this afternoon crash and continue to feel badly until the next morning. In the evenings I rest; I can never do anything after work beyond very light errands.
Rarely, I will wake up during the night feeling anxious and unable to get back to sleep. I'm not sure if that is a symptom or more of an emotional consequence to how worried I get about all of the missed work and productivity I experience.
If I skip my AM workout, I will still experience my afternoon crash. I have not been able to lose any weight for a long time, so I continue to exercise as much as possible despite the irregularities in my energy level.
This is how I get through the week. Saturdays are much the same except I only work for a few hours in the morning and don't even attempt longer. By Sunday I am so run down that it is, out of necessity, a full day of recuperating. I do not feel up to working or going out on Sundays.
I am a 32 year old female with a type A personality. Before I got sick I was fiercely competitive and still try to be as much as possible. I also try to be compassionate and realize that my problems are nothing compare to those of others. But for me, my inability to have enough energy to get through the day is devastating. I feel as though I am fighting with one hand tied behind my back, and cringe at how lazy I must appear to others. My weight problem contributes to this; as I doubt that anyone would suspect that I workout and watch what I eat given my appearance. So I look like an overweight lazy slob; when inside all I want is to be well enough to apply my abilities to my work.
In addition to my ongoing issues with Lyme and my (more recently acute) problems with energy, I exhibit some other oddities, including: Excessive body hair, esp. on my face/neck. Odd lesions inside of my mouth that do not hurt or grow/change. (They appeared years ago, and give the inside of my cheeks an unusual topography. Several doctors have seen them, none feel they are cancerous, but none can explain what the heck they are.) As mentioned above, I have a very difficult time losing weight, but it creeps on easily. I experience an extreme worsening of all of my symptoms and energy problems around my period, witch is regular, if not unusually frequent. (<25 days in between, sometimes only 21 days per cycle.) I carry a lot of weight in my face. My shirt size is several larger than my pant size. I don't know if any of this is relevant, but since I'm getting frustration off of my chest, I thought I'd throw in these (charming!) details.
I don't know or understand how I have come so far in recovery, and can at times be so active and feeling well, yet still I experience a host of symptoms and a daily energy "crash." While it is my body that is going through these extremes, my emotions are pulled along and some days I feel a great strain to keep it together mentally. I don't know what I need to do to move past this stage in my health.
For now, I just shake my fist at the skies and keep going as I can. I like to think that I will get out of this rut, but needed to gripe about how it feels to be stuck here for now...