So I had another test yesterday at the hospital — an MRE to look at my small bowel. Over the last two years I’ve had more tests done than I can even recall. Blood tests, scans and the list goes on and on. Every specialist has different tests to run, and then when something comes back on the tests there’s more tests to run.
I can no longer count on one hand how many specialists and doctors I see. I wish I could. I keep a folder to try to keep it all organized.
I can also no longer count on one hand how many miscellaneous random elevated or low tests have come back that get back to me with no explanation for.
Sometimes I don’t know who is more perplexed. Me or my doctors.
I, like many, struggle with so many things. Those meetings with my doctors or a new doctor come with severe anxiety. I’ve gone over my medical conditions and symptoms more times than anyone ever should. And every time you have to explain it, it’s like having to get them validated over and over.
I am fortunate to have a good mix of doctors. Some good, some not so supportive. I tend to learn the most from them from the reports sent back to my general practitioner.
Yesterday’s test, like many over the last few years, left me in pain and barely able to leave the bathroom. But this test was different. I didn’t only suffer the physical side effects. When you have chronic pain, even the slightest amount of pain over and above what you regularly deal with can send you over the end. But today’s test broke me emotionally.
I finally had to admit to those around me a few months ago that I was had depression and that my anxiety was out of control. Admitting this was hard. I’m lucky to have a lot of people around me who didn’t question it, asked how they could help, and if I needed anything.
Yesterday’s test left me lying on the couch in stages of sleeping then crying, then sleeping then crying. There are times I feel bad and even guilty for being sick.
I feel bad that my husband, who has his own medical issues, had to keep running for a cloth or a bucket. Or that the dinner I was supposed to make didn’t get made and now he has to figure something else out for dinner.
These are things that weren’t explained to me when I got sick. That being sick was going to make me sad. Sad for the losses I would experience. Sad for the amount of tests I would have to be subjected to. Sad for the feelings of helplessness when you’re sick and you see those around you struggle to try to make things better for you. That being sick was going to make me feel guilty. Guilty for the added pressure to my loved ones. Guilty for being that friend who cancels plans a lot. Guilty for having to call into work and telling them you just can’t make it in that day. That being sick was going to make me angry and resentful. Angry at the test and medications that are supposed to make me feel better. Some work but some have side effects that leave me feeling even worse. Angry that I can’t clean the house, again. Resentful of my friends who live the type of life I want to live. You know, the un-sick kind. Where you work and socialize and go about your day without having to worry about where you are spending spoons.
I’ve started seeing a doctor to deal with these bouts of sadness and anger and resentment. I’m nowhere near where I want to be. And I’m struggling more than ever to accept that this is the new norm for me. I’m working on a pain and illness emergency home plan. This will include having extra meals in the freezer, a pain step plan for when my pain is unbearable, and hopefully a plan that will make it easier for those around me to know what they can do to help me. Even if it’s just a little.
Having a chronic illness like Behcet’s disease is hard. And having chronic pain on top of it is even harder. But I survived yesterday, and today. And the days that go by aren’t always going to be easy. So if there’s any advice I can give, it would be to make a plan. And know that when you’re feeling hopeless and lost in your illness/disease, you’re not alone. Reach out. Join a group. Vent. And never feel guilty for how you’re feeling. You didn’t ask to be sick. I ask every day to be healthy. And even though I know I’ll never be the old healthy me, I know I will one day become the healthiest sick me I can be.
There’s a lot of trial and error that comes with being sick. Nothing ever works the same for every person. But don’t give up. Don’t stop sharing. Because you never know who might be reading what you wrote, and how those few words might be exactly what they needed to hear that day.
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