This post is going to be about health stuff, including some mild reproductive system stuff, so if that might be upsetting to you, you probably don’t want to read this.
I’ve gone through phases of sleeping poorly for most of my adult life. It’s milder than true insomnia and seems to be caused by physical discomfort. I lie down and can’t find a comfortable position. My legs or shoulders or neck or arms (or all of the above) are too tense or achy or stupid-feeling for me to fall asleep. This’ll go on for a couple of weeks and then I’m back to sleeping normally for a month or two.
I’ve believed I was more tired than average for the past seven years or so, too. Depression can cause fatigue, as can chronic migraines and sinus problems which I also have. I always blamed my lack of energy on those things, and I figured I was probably a little lazy, too.
This March I had a headache every single day of the month. I feel like I had a migraine that showed up and didn’t fully retreat until April. It receded a bit some days, but on a scale of 1-10, I rated my head pain 6 or higher 21 days out of 31 in March. I was tired and sad and discouraged. Being in constant pain does that.
The first week of this month (April) my headache finally let up completely, but I still felt worn out and listless. Getting out of bed for work was a huge struggle. Every day felt like a fight I wasn’t equipped for. I just didn’t have any energy. For the most part I’m very good about practicing good sleep hygiene (no caffeine close to bed, no naps during the day, put my phone away before getting into bed, etc) and made an effort to eat well. I tried exercising, but even short walks just made it worse.
One day I woke up feeling like I’d rolled down an asphalt hill and was fed up. I called out of work and made an appointment with my primary care provider. She listened to everything I had to say and took me seriously, which was great. She heard a heart murmur that wasn’t there before, so she said she wanted to order an EKG and an echocardiogram. She also asked me to come back when I hadn’t eaten to have blood drawn.
The next day I threw up on the way to work. Since I hadn’t eaten anything yet, I went to the doctor’s office and got the blood drawn. That day and the rest of the weekend, I basically just read and slept. I didn’t even feel like playing Skyrim, which I’ve been extremely into lately. My boyfriend started working on this year’s garden without me, which was a bummer, but I just didn’t have it in me.
A week ago today (April 13th) I had a follow-up appointment with my gynecologist I’d scheduled months ago. In late December and early January I’d noticed blood on the toilet paper when I wiped several times. There was never enough blood for it to actually leak onto my underwear, just an occasional streak on the toilet paper. It bugged me enough to schedule an exam, so I had one in January. Then in February I skipped my period. My March one came on schedule. The occasional blood still showed up.
I filled my gynecologist in on the other symptoms I’ve been experiencing lately: crushing fatigue, aching muscles, slight dizziness, stiffness, increased light sensitivity, constipation and diarrhea, and the new heart murmur. She did a well woman exam and a nurse drew blood to test for anemia and check my thyroid function. I also gave a urine sample, which they told me had a small amount of blood in it. The gynecologist scheduled an ultrasound for April 25.
Friday I called my primary care provider’s office and the only test result they had was B12, which was normal. My echocardiogram and EKG still hadn’t been scheduled. I was super frustrated, but I didn’t really know what to do. I grew up not going to the doctor for anything, and I’m not an assertive person, so I figured I just had to wait around for stuff to get done.
Sunday I got an email from my gynecologist. There is a patient portal that sends emails when lab tests come back. Everything was normal: my pap smear, my thyroid test, my CBC (complete blood count), the urine culture (there was no UTI). I was relieved that the pap smear was normal, but I burst into tears when I saw that it said “no signs of anemia.” I’d been sure anemia was my problem. It fit my symptoms so well, and I’ve been anemic in the past. It would have been such a sensible explanation with a tidy solution.
I cried for about 20 minutes, thinking I was making all this up, that I’d be stuck feeling this way forever because they’d never find a reason since there is no reason other than my being a lazy crybaby who wants attention. I couldn’t imagine how I’d get through life being this tired and sore and weak.
Later I texted my mom and she told me that I couldn’t just create a heart murmur and blood in my pee with my imagination. That made me feel a lot better. The next day I called my nurse practitioner’s office and made another appointment.
My friend M went with me to take notes and ask questions. I am having trouble focusing lately too and it really helped to have her there. She made sure nothing was forgotten. My nurse practitioner was great again. She listened patiently and was thorough. She explained the mix up with the blood tests and the delay in getting the echocardiogram. She did a 10 second EKG, which was normal, but is also referring me to a cardiologist. Blood was drawn to test a bunch of stuff, including ferratin level, lamictal level, and whatever it is they look at to aid in diagnosing lupus and another autoimmune disease.
She gave me an order for a chest X-ray so my friend took me to the hospital for that right away. They called today and said it was normal, which is great. Tomorrow afternoon I can call and see if any of the other lab tests are back yet.
So that’s where things are now. I haven’t been able to work. My job is physically and mentally demanding (I do therapy with toddlers). Even if I could force myself to push through the pain and fatigue, it’s pretty apparent that I am sick, especially because I’m getting out of breath easily. I don’t want families seeing me this way.
I am vacillating between thinking I’ve dreamed all this up and that it’s going to be humiliating when they tell me that I’m a delusional hypochondriac drama queen and worrying that something serious and life-changing is wrong with me. I’m also afraid that this is the beginning of a years long quest for a real diagnosis, that I’ll have to go from doctor to doctor before someone with the expertise to do something about it actually takes me seriously.
Uhhhhh…..I guess we’ll see.