When 'Normal' Life With Your Chronic Disease Keeps Changing
I’m not sure I exactly remember when it happened, but I know it was sudden. I was having trouble running, then walking. Soon, I couldn’t sit for more than a few minutes at a time without pain radiating up my back. I thought I had an injury – I lived an active lifestyle, after all. Surely I just pulled something or had a small stress fracture. It would get better.
But it didn’t.
Weeks turned into months turned into years. Along with the pain in my joints came rashes and overwhelming fatigue. I couldn’t form a fist anymore because my fingers were so stiff and swollen. I’d urinate blood every time I went to the bathroom. I started chemotherapy and it helped a bit, but even with such a potent medication I still didn’t feel the way I used to. After a few rounds of it, I realized that I probably never would.
Being diagnosed with a chronic disease wasn’t in my five year plan, to say the least. Neither was chemotherapy, or getting a port-a-cath placed, or seeing the doctor at least dozen times a month. I’ve had to adjust my diet around my faltering kidneys and schedule plans around the rashes on my face. “Normal” for me now includes frequent ER visits and struggling to breathe just walking to the mailbox. It’s pain in my joints, sometimes so severe I can’t get out of bed. It’s taking a handful of pills twice a day and taking a few days off a month to go to the hospital for infusions. It’s not what I planned, or what I wanted, but with time I found a strange comfort to my routine. As long as things stayed relatively predictable, my diagnosis and new way of life were surprisingly easy to accept and adjust to.
But chronic disease isn’t exactly predictable, is it?
A few months ago, I started coughing. I thought I had a bad cold, and because I’m immunosuppressed I knew it would take awhile to get over it. I monitored my temperature for any fevers, bought some cough drops, and tried my best to push through it.
Weeks went by and seasons changed, but the cough persisted. Soon, months had passed with no improvement. With the cough came shortness of breath, and before long I was coughing so violently that I was vomiting and spitting up blood. I couldn’t walk up the stairs anymore without having to stop and catch my breath, and started to realize that my physical ability was becoming increasingly limited. I tried all of the normal cough remedies, but none of them were helping. After a few visits to the pulmonologist, it was determined that my disease was attacking my lungs. The cough, the shortness of breath, and my limited physical ability weren’t going to improve. This was my new normal.
Years of treatments and therapies, all of the time lost in the hospital or laid up in bed after chemotherapy, all of the pain and all of the things I’d put on hold to treat my disease – it simply wasn’t enough. The disease is still there, and it’s going to continue taking and taking and taking until there’s nothing left.
Now, I’m reminded of that with every breath I take.
I’d be lying if I said I’ve always handled this well, or that I haven’t laid in bed at night bartering with my white blood cells to just, you know. Chill. There are days I’ve felt like I have to go explore the world to “make up for lost time,” and days when I wonder if it’s even worth it to get out of bed at all. Some days are better than others not just when it comes to the physical symptoms of my disease, but how I am mentally and emotionally coping with them.
The hardest pill I’ve had to swallow since being diagnosed with a chronic disease (and believe me, I’ve swallowed a bunch) was learning that with chronic disease, “normal” doesn’t exist. You’re constantly adjusting, whether you realize it or not, to your symptoms and limitations. Adjusting is difficult, and even after years of practice I haven’t found that it’s gotten too much easier. It’s going to take time, maybe a lot of it, and that’s OK. The point is to, despite how impossible it might seem, keep putting one foot in front of the other. Keep track of your little victories and never forget how incredible you are for just taking your medication, for eating breakfast, for walking down the stairs.
“Normal” is going to continue to change but as long as you keep going, you keep fighting, your disease doesn’t win – no matter what your blood tests or CT scans might say. As long as fighting is part of your normal routine, you’re a champion.
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