Yesterday was my 22nd birthday. It was a hard day. Around a year ago, this time of year, my symptoms were starting to worsen. I was enrolling for school, but nervous about how much I was going to be able to handle. I had just finished my summer job, and was tired from my schedule, even though I was only working afternoons. I kept telling myself “this is temporary…it’s a fibromyalgia flare…it will go away and school will be just like it was last year.”
My symptoms kept getting worse, and the life I’d known before started to deteriorate. I could study for an exam all days, and be too weak the morning of the test to go to class. I kept making plans with friends and canceling because I didn’t have enough energy. I started spending more of my time seeing doctors and resting. I told myself “I’ll just take some time to figure out what’s wrong…by next year at this time, I’ll be recovering.” Of course, I had no idea if I’d actually be recovering, but it was comforting to think there would be an end to the symptoms and lack of control.
It’s been getting closer and closer to the “deadline” I set last August, and my symptoms have been getting worse. I feel like I have so few abilities, and I’m hitting a lot of dead ends in my medical tests. This week, pain and weakness were especially bad, and that sent me into a downward emotional spiral. It’s not fair that I couldn’t make plans for my birthday like a “normal” 22-year-old, it’s not fair that I can’t go back to school, it’s not fair that I’m always in pain and none of my doctors have any answers.
None of it is fair, and it’s not going to be fair. I can’t bargain with the illness, and I can’t decide that if I will things to change, they will actually change. I have limited choices, and I have to accept that for now. Happiness is mostly an internal state. I don’t think it goes entirely unmediated by external factors, but I think we’ll always wish for better circumstances no matter what our current situations are. So I decided to let myself be angry, and have a birthday in pain. I allowed the situation to be as it was. I still appreciated small things, and I grieved for the things I couldn’t have. I wasn’t able to have a big gathering, or go out with friends. I settled for a movie with my boyfriend, and even that was pretty exhausting for me. I still ended the day happier than I’d started it, and I think that’s a big step in healing.
Lesson learned: false deadlines for undesirable situations don’t help. They give us false hope, and good social defenses, but eventually, the scaffolding will start to fall, and we’ll have to reexamine everything we’d once considered comforting and true. Being honest and practical about pain or trauma is the only way to get through it. So, from now on, I’ll be honest with myself, and appreciate as much of my situation as I’m able. I’ll keep looking for answers, but I’ll stop feeding myself false comfort and motivation. I will be ambitious for healing with no pretense.
On a different note, my gastroenterologist has decided to start some new stomach medication, and my feeding tube is set to be moved the first week of September. I had some abnormal thyroid tests, so I started thyroid medication today. Finally, I have a referral to see a neurologist to explore some of my neuropathic pain symptoms, and get an MRI. Hopefully some of these new therapies will lead to new avenues for healing. Thank you, again, to those of you who provided the funding for my new tests and therapies. My research will keep me moving forward, and I plan to keep trying new strategies until I find more comfort in my mind and body.