|Photo source unknown|
I have worked on this post, on and off, for several months now, and I have concluded that no matter what I do with it, it still sucks. However, I am going to publish it because it represents the only writing outside email correspondence that I have managed lately. I find that it sounds a great deal like whining, and perhaps it is. But it is what I am processing internally. I usually get past whining at some point, but, at this particular moment, whining is all you get. Here it goes:
A few months ago, while running alongside other
For years, I have made these little adjustments for my pain, getting my husband to make the bed because pulling and tucking sheets sends pain shooting up my fingers (and because I hate making the bed), wearing two pairs of gloves when running in the cold since the cold makes my joints ache, getting people to open containers etc. Years ago, when I first tried to start running, I hired a physical trainer to help me adjust my stride to avoid knee pain, and then finally gave up. I was about 28 then.
I've had knee pain since I was 21, at least, and it just gets progressively worse. I have tended to generally ignore it as best I can. I have been told this is an effective behavioral technique for annoying children, unwanted news stories and non-catastrophic illnesses.
That may sound crazy or irresponsible to those of you in excellent health, but I have been managing chronic health conditions of one kind or another for many years, sometimes without insurance, and this has had the effect of making me rather judicious about what concerns I will actually pursue. Also, I have a hard time trusting doctors, although I generally am a great believer in science. This is due to a host of difficult experiences throughout my life.
For instance, I developed thyroid disease when I was eighteen, with a TSH so high that it was over 700, which is crazy. (It should be under 5.) At the time, I was newly sober and taking anti-depressants and my doctor treated me as if every problem I had was mental. Despite presenting a textbook case of hypothyroidism, all anyone wanted to do was adjust my anti-depressant. I could hardly get out of bed, was freezing cold in summer weather and generally felt half dead. Planned Parenthood eventually diagnosed my thyroiditis after I actually started lactating due to my endocrine system completely having blown its gasket. (Keep that in mind if you happen to think Planned Parenthood isn't a vital service for the women who use it!)
Subsequently, doctors treated any complaint I might have as symptoms related to thyroid disease. When I think back, I went to a doctor in my very early twenties complaining of foot pain, joint pain, exhaustion, and the doctor said, consolingly, “I think your major concern is that there is something wrong with you.” DUH. Now, my doctor says I have foot conditions that warrant seeing a podiatrist and blood tests and other symptoms which may, or may not, suggest an autoimmune disease. So, was I making this stuff up before, or have I simply been able to manifest actual physical symptoms through the power of my maladjusted mental state? Later on, I had three difficult pregnancies, with cramping, preterm labor and a host of problems getting my thyroid in check. All the drama associated with being a faulty incubator kept me medically busy for years.
Then, a couple years after I moved to Northern New Mexico from Northern California, I developed horrible seasonal allergies.
These were seasonal in that I had them during every season of the year.
I had breathing flare-ups which led finally to a diagnosis of asthma (which in my childhood had been dismissed as psychosomatic coughing) and sinus infections about once a month on average. The sinus infections lead to migraines, which then became chronic and still average 10-20 or even more in a given month. During this time, I saw an allergist regularly, an ENT, a sleep doctor and ignored a referral to a neurologist, alongside constant visits to my regular doctor to obtain more antibiotics. After two years on allergy shots, my allergy symptoms are now manageable and sinus infections down to a couple times a year. I have learned how to manage the improved asthma. So, I started running.
Then, with running through my first winter, suddenly, I had this noticeably worse joint pain. Right about when I decided to finally address this, my neck started causing me terrible, intermittent pain. Then muscle pain started shooting all over my body. I could go on, but it isn't really all that interesting. So, in my current adventure, of not being able to find out what is wrong with me while visiting lots of doctors, I will offer the following ruminations I have been contemplating:
Here are some things you have to start thinking about if you are suffering from an unexplained, chronic illness.
Question #1: At what point would I actually collapse?
|Photo-Exhaustion by John Athayde|
But now that I have experienced having to drag myself through my days on what feels like will alone, through pain that would otherwise make me sit and cry, exhaustion that makes it hard to keep my eyes open, and/or dizziness that causes me to nick every neighboring surface with my hips over and over-I don’t know when to stop anymore. My body displays these bizarre symptoms and my head repeatedly tells me “Something is VERY wrong here! RED ALERT! RED ALERT!” However, either because I can’t get a call back from a rheumatologist or because my next appointment is in three months and that was hard to get, or because I have run through all my sick leave, or because a course of prednisone and some pain meds did not make this go away, or because the anti-inflammatory medicines that allow me to manage my pain are making me nauseated, I can’t keep listening to my body.
I suppose I COULD, but, if I did, I would certainly not be at work. I would not be running kids hither and yon to soccer, choir or doctor's appointments. And I just can’t see putting everything on hold indefinitely when it may be weeks or months that I have ahead of me, getting through this. (Also, I suffer from a terrible, oppressive boredom during what other people lovingly call “rest”.)
But, again, where that leaves me is that I don’t really know how far I can push this sack of bones. How much can it do on the insistence of my mind that it continue? So far, it can do waaayy, waaaay more than I ever suspected. I t turns out I can generally work from 7:45 to 3:30, make my kids’ medical appointments, church business and basically maintain my home routine, with slightly relaxed standards. Which leads me to question two.
Question #2:Is everything really as relative as it seems, and, if so, can I alter this whole thing purely through my frame of mind?
This question arises in the face of things like a "pain scale". Please see Allie Brosh's post on this for an assessment of the usefulness of this tool: Here
How bad is the pain? Compared to what? What I think would make life tolerably pleasant? Compared to giving birth with no pain meds while your tailbone is broken? Compared to being mauled by a tiger? I always give it something like a five. Eight if it makes me cry. Nothing is worse than being mauled by a tiger. I reserve my ten for that.
Additionally, pain and other symptoms always get worse if I pay close attention to them. This being true, I stupidly cannot answer a multitude of questions posed by physicians on my condition. Is it worse when you first get up? Or when you become active? Where does the pain center? Do your hands turn white before they turn red and blue in the cold? Then, after each appointment, I have some new set of symptoms to pay attention to, so that I can answer correctly about them next time, and, naturally, they feel worse as a result. Being very smart, and then notice this is all very relative. Which entices me with the prospect of returning to ignoring everything I can about what is going on, in the hopes that this will make it better. It would certainly be less time-consuming.
This coming Tuesday I have a neurology appointment, the theory being that perhaps having double digit episodes of migraines monthly may have screwed up the pain centers of my brain. I am so hoping this is it, and that some new prescription can prevent the migraines.
At this point, I really want some answer. Even more than the symptoms themselves, I think I hate living with this concern that there is nothing wrong with me that anyone will be able to fix, that I will continue to feel like crap but that everyone will think it is all in my head.
Where’s Dr. House when you need him?