I’ve spent a lot of energy the last few months working hard, going to physical therapy, keeping up a healthy diet, stretching and exercising regularly, taking new medications, and seeking out other treatment plans for my illnesses and pain. I think this is part of what kept me sane coming back from France.
I left France on a much less victorious note than I had imagined. In my head I would arrive home mid-December, bags in hand, to a chorus of Welcome Home’s from my friends and family, filled with new French vocabulary, stories to tell, and energy and happiness to finish my degree quickly so I could continue my travels. Instead, I arrived suddenly, weeks before I had planned, wheeled around the airport by their disability staff, after they were finally able to locate my bag because despite the fact that I could remember exactly what it looked like, I couldn’t find the words to tell them that it was a black bag with a purple ribbon tied on the end.
It’s okay, I told myself. Maybe this isn’t what you imagined, but this is what needs to happen. You just need a few weeks to get back on your feet, see a few new doctors in a language you fully understand, maybe try some new medications, and then you’ll be back to normal.
And so, I did. I got home and immediately made as many doctors’ appointments with as many specialists I could get a referral to and spent my necessary time in bed researching treatment plans. I did what I always do when faced with a problem: I organized it. I simplified everything down to a task list, a binder of information, and a calendar filled with appointments, and diligently marched, occasionally limped, onward.
This next appointment will hold answers, I thought. This next appointment will put me on the path to recovery, and I’ll be back to myself in no time.
When I went to my first appointment, a specialist appointment with a rheumatologist, I came prepared with my binder full of symptoms, current medications, and an understanding and helpful Uncle who agreed at the last minute to tag along in case I needed a medical interpreter. I left with a diagnosis of fibromyalgia and CFS/ME and the suggestion that I try going on Cymbalta as a catchall for my depression, anxiety, and chronic pain.
Next up was my physical therapy appointment. I got the papers demonstrating all my new stretches and muscle endurance activities, dutifully filed them in my binder, and began my PT that evening.
Then I emailed back and forth with my psychiatrist to get him to switch my medication. Multiple doctors have suggested this drug, and all the articles online said it’s been helpful for chronic pain, I thought as I wrote another email describing my symptoms for the thousandth time, ignoring all the other medical journals describing the long term effects of Cymbalta and the difficulty patients have had in changing medications when it didn’t work for them.
I met with a nutritionist to help me heal my broken relationship with food after years with an eating disorder, and to help me make sure I’m getting all the nutrients I need. After all, the only odd thing in my blood work is a vitamin D deficiency, so I should get some guidance in taking supplements.
I started using essential oils, meditating more regularly, practicing gentle yoga with my physical therapy, getting outside more for walks when my energy allowed it. I regulated my sugar intake, bought a TENS unit, put my phone away two hours before bed, modified my daily schedule, took supplements, and changed my medication. I did everything the doctors told me, and I did it perfectly. I did my physical therapy everyday like clockwork, took my medication on time, and listened to my body and took a rest when I needed it. I did all of that, and yet.
This isn’t working, I thought going through my pain records for any change in symptoms, duration or intensity. I need to do something else, something more. I need to see another doctor. Get another point of view.
So, I saw a Pain Specialist. I was referred to her and managed to get an appointment all in the midst of one of the worst pain flares experienced to date. Perfect, I thought, lying all but comatose in the passenger seat as Mom drove me into the city for the appointment. She’ll see me right as I’m dealing with all this, so she’ll be able to tell me what’s going on. None of my other doctors have seen me during a pain flare. That must be it. That’s why no one can give me a solution.
I’ve been poked and prodded, x-rayed and scanned with MRI. I’ve had blood drawn, tests done, and all manner of bodily fluids run through the laboratory for answers. (Believe me, if it can come out of a human being, it’s probably been tested by my care team.) I’ve done everything my doctors have told me, tried every holistic approach on the market, and yet.
I had a therapy appointment earlier this week. I’d forgotten about it until the night before but was relieved when I remembered. At least part of me is getting the care it needs.
In therapy I expected to talk about the stress of final exams, the paper I’ve put off writing, the excitement I’m feeling because I’m going to see BTS in concert. But that didn’t happen. Instead, when she asked me “How are you?” and I opened my mouth to give the normal “Fine”, I broke down. It started small. Just a little throat clearing and a few stray tears; normal for my therapy sessions as I’m an emotional person prone to outbursts. Then it changed. I found I wasn’t able to hold it in, wasn’t able to talk in full sentences, wasn’t able to keep my bottom lip from wobbling or myself from hiccupping.
“I’m doing everything right,” I managed to say, going through tissues faster than I’ve ever done. “Why isn’t it working? Why am I not getting better?” Then it hit me. The thing I’d been ignoring since I came back to the states.
I won’t get better.
That’s not to say there can’t or won’t be days that I feel better. By doing all of the work I’ve been doing I’ve managed to increase my energy and my mobility and found coping skills for the pain.
The fact of the matter is, I won’t get better. I keep thinking about ‘getting back to normal’ or ‘being me again’. Those aren’t healthy ways of thinking because this is me. This is my normal. And sometimes I need to sit down and allow myself to think “this sucks”. I need to allow myself to grieve. Grieve for the person I was and the person I could have been. Cry for myself and cry often, loud, and without reservations.
Being chronically ill sucks. It sucks big time. It’s hard and devastating and embarrassing and frustrating and painful and unfair and it sucks and it’s not going away.
But that doesn’t mean it has to break me.
I think part of being a spoonie is going through this cycle of frustration and acceptance, anger and determination. Some days I get up, look in the mirror, say “fighting!” and face the world. Other days I moan and groan and curse and cry. And that’s just the cycle. Because with illness comes anger and resentment. Also strength and resilience. The best thing I can do now is balance. Walk this tightrope with my head held high, because this is my new normal. This is my life. And dammit, I’m going to live it.