“I believe you” and “I get it” – We need both!

If you’ve been reading along, you know I am an athlete and I have chronic pain. You know that running is both my motivation and occasionally my demise. You probably also know I recently experienced my first running related injury and because of that, I’ve been forced to take my first running hiatus in over a year. This is so hard and painful for me!

Anyway, with the goal of returning to running and combating an RSD flare, I saw a physical therapist about my knee injury. The entire day I was apprehensive; my experiences with physical therapists until now have not been the most positive. When I arrived, I explained my injury and then, hesitating a bit, I explained about my RSD. I shared that, truthfully, for more than a decade I haven’t known and can’t imagine a situation where something hurts and then stops hurting – especially in my legs. I shared that I have a really hard time telling if something hurts or if I am hurt. I mentioned that I have an even harder time determining if something is “bad enough” for me to stop being active (a trusted antidote to functioning while living with pain). I discussed that it’s hard for me to distinguish between “good pain” and “bad pain”. In fact, I noted, I have been conditioned to push through the pain. I said that I’m known to second guess myself and to question if my pain is even real. I said that I usually think I’m making it up or that it isn’t that bad.

My body language must have shown that I was scared too. I am scared! Actually, my fear is somewhat debilitating. I’m scared it won’t stop hurting ever. I’m scared I won’t be able to run or move the same way again. I’m scared it will escalate into something chronic.  I’m scared this injury will negate all the work I’ve done and how far I’ve come. I fear relapse in the face of what seems right now to only be a minor setback.

I have so many questions! When will this associated pain flare end? Will this become my next permanent pain spot? Will I regain full functionality? How will I be able to tell when it is done hurting from the injury and back to normal pain? Is it a bad thing that I can’t distinguish the two pains anymore? I have good reason to be scared and worried about these things – they’ve happened before!

To my surprise, the physical therapist I saw was well informed about my condition and listened carefully as I explained what I was experiencing. After our conversation, he said two important things. First, he said, “I believe you. This is real” and then he said, “It will stop hurting”.  I didn’t expect to hear either of those statements from him.  Especially because “a huge burden for patients with chronic pain and fatigue is not being believed.” That was the first time I felt validated by a medical professional regarding my RSD as an adult. I didn’t have to explain myself or justify my pain. Hearing that simple phrase “I believe you” was so important. For me, that phrase allowed me to reciprocate (in my head of course) with, “I trust you”.

It was a hopeful, positive moment in a span of two incredibly lonely weeks. Since my injury, I’ve been completely unable to do many of my normal activities. I am stuck in my head and in the pain. I’m recognizing and rationalizing my pain constantly. I want to scream all day long. I feel like this is all my fault. I always feel like I’m making it up or making it worse than it really is. In that way, I feel like I can’t trust myself or my perception of my injury.  It’s exhausting to second guess myself and negate my own feelings while coping with a legitimate, real injury.

I’m also sulking about not being able to run. My Pinterest searches for running quotes have skyrocketed! I miss it! I cannot explain the desire, need, to move and be active. I’m scared that I will lose my ability to run if I don’t maintain it! I truly am worried if I won’t be able to start again now that I’ve stopped.  I’m also scared to be active because I am anticipating the pain. In the past, I’ve known it will hurt and learned how to be successful in my daily life and activities, but this new pain feels different. I am angry and I miss feeling like me and feel like nobody wants to hear about it, everyone wants to tell me it’ll be okay, and they wouldn’t understand even if I tried to explain.

Coincidentally, I recently had another differently reaffirming experience recently related to RSD. Two years ago, I was a mentor for a program for teens with chronic physical illnesses called TALC. The program teaches teens leadership and self-advocacy skills in relation to both their experiences living with chronic illness and the typical developmental trajectories of adolescents. My year as a mentor in this program was profoundly important for me. During that year, I was a graduate student and most of the time I felt like I was an impostor. I felt like I had little to offer in any contexts in which I was participating – except TALC. My involvement in TALC was important because I instantly had the feeling that I was in the right place. TALC has an inexplicable way of cultivating a feeling of belonging and like everyone is essential because of what they bring to the space.

I recently visited TALC and almost immediately upon my arrival the feeling of warmth and connection I loved about being a TALC mentor was reinvigorated. I even had the opportunity to meet a new mentor who shares my diagnosis. It’s really remarkable when I meet people with RSD! Overwhelmingly my experience in TALC could be described as a feeling of understanding and belonging. Sometimes, my connection felt like a tepid “we’re in this together” rather than a fervent “I get it”. However, when I met this mentor and shared about my diagnosis, she was beaming! I am the first person she’s met who shares her diagnosis. I can guarantee, there’s a different kind of reassurance and intimacy that emanates from empathy. It’s been a long time since I haven’t felt lonely and have felt seen with my diagnosis. Feeling totally vulnerable but not scared or exposed was an unexpected, welcomed feeling for me!

I used to think that being believed was enough. I used to hope for more moments where I didn’t have to explain myself or field questioning looks when I shared about my condition. I used to not share my actual diagnosis because I was sure it wasn’t serious enough or believable enough. I know there are people whose struggle is more difficult than mine and whose diagnosis is easier to understand (read: believe) or more serious than mine. Because of this, I didn’t always see the value of disclosing my condition. When I did, I did so because I had to share this information with a medical provider or because I felt very safe and like I could trust the person. Even in TALC, although I could relate well to the teens’ experience I didn’t often share my diagnosis because it felt trivial and insignificant.

Yet, from these two experiences, I learned that folks with RSD need both “I believe you” and “I get it”.  I know now that being believed is absolutely important, but being understood is even more vital! That type of genuine understanding is something I typically only get from my RSD Sisters. I have been so focused on being believed and explaining myself to the world that until I saw what understanding looked like reflected back at me, I forgot it’s critical value. We need to be supported by our friends, families, and medical providers, and we also need to be connected to each other in ways that elevate our successes and potential to thrive despite our pain. We need people who both understand and believe us without lengthy explanations, and know that our individual experiences are personal and unique.

Is your experience limited to “I believe you” and lacking “I get it”? If so, let’s connect because we need both!

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I didn’t run for a week and here’s what happened…

Being a runner and having an injury is the worst! An injured runner is someone you don’t want to cross. Injured runners are even scarier than runners who have a case of the “taper crazies”.  Anyway, my most recent taper week was challenging to say the least. There was even a point where I crumbled to the floor in my apartment and whined about how badly I wanted it to be race day (pathetic I know!).

In the end, my taper went as well as expected and I was pumped for my race. I did pretty well too (within 5 minutes of my goal time!) especially considering I got injured in mile 6.  After my race, I was in a lot of pain, and when I saw the doctor her diagnosis of my injury was a right LCL sprain. The prescription – no running for at least 2 weeks. I was supposed to “rest”. I actually cried after I left.

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Runners HATE not running! In fact, before this week, I hadn’t taken more than 3 days off of running in over a year. For me, running is just about as productive and useful as therapy. I need it. It’s a part of who I am. I am a runner.

So, naturally, I’ve been a little out of sorts for the past week. Because, instead of pushing my body beyond its limits, I actually didn’t run for a week. I am training for a marathon and want to be healthy for my race. So, I followed the doctor’s orders, and I’m craving running so badly I want to scream! Is it possible to be addicted to running?

Anyway, here’s what happened when I didn’t run for a week:

Monday: While icing my knee at work, I bought the Brooks thermal running jacket I’ve been eyeing. I knew I couldn’t use it for a few weeks, but all I could think about was running so I broke down and bought it! After work, I went for coffee and then I came home and played games, drank wine, and ordered sushi with my roommates. I had hours before I had to go to bed! My first night off I socialized.

Tuesday: I came home and called a friend. Then, I cooked dinner – roasted veggies and chicken to be specific. I ate dinner at the table while gossiping with my roommates. Then, I poured a glass of wine and watched Grey’s Anatomy. Spoiler: I’ve watched three seasons of Grey’s Anatomy in the past week.

Wednesday: I went to the nail salon after work. I spent a few hours listening to music and relaxing at the salon. Then I came home and ate dinner. Next, I went out to work on a song I’m writing with a friend. I stayed out late because the next day was a holiday and since I am injured there no Turkey Trot for me (cries!)!

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Thursday: Thanksgiving! I woke up late and got dressed to go back to my hometown. I enjoyed my favorite Thanksgiving tradition – High School Football! After an afternoon of relaxing, we had a nice family dinner. I didn’t overeat to prep for a long run over the weekend, I didn’t overeat because I “earned” it during my Turkey Trot, and, importantly, I didn’t undereat because I didn’t run. Then, we went shopping until 2 AM! I didn’t have to worry about getting home or to bed to run the next day.

Friday: More shopping, napping, wine drinking, and Grey’s Anatomy watching. I browsed Amazon for deals on running gear and ultimately bought myself a new running watch. I cannot wait to hit the road again and try it out!

Saturday: I woke up early and did laundry! Surprisingly I had less laundry than normal (duh!) so I even had the time and patience to wash my sheets and sneakers! I made coffee and breakfast at a leisurely pace and, of course, watched Grey’s Anatomy. Later I had a long lunch with a friend and went to the movies. Saturday was the hardest because it is normally my long run day. In Boston, it was 55 degrees in the afternoon and I spent it inside! I was so angry and agitated. It felt like the smallest comment could set me off into a spiral of never-ending anger. On the flip side, it was nice to spend time with my friend and get important “adult” things done.

Sunday: I woke up early (again) and made some coffee. I walked to Whole Foods to buy ingredients to make brunch. It was nice to go for a walk! Putting on my sneakers gave me a little jolt of energy. When I came home, I made two quiches – broccoli cheddar and spinach, tomato, and mozzarella. After brunch, I worked on finalizing my applications for graduate school. I took a short nap in the middle and then worked on this blog post. Soon, I’ll be off to rehearsal for my a capella group!

Tomorrow will be Monday again and officially one week of no running. I am both proud of the strength I exhibited to take care of myself and incredibly anxious to lace up my shoes and get back on the road. Tomorrow after work though I’ve planned to have dinner with a friend from college and do some PiYo or yoga. That will keep me busy!

Not running for a week was difficult! I worried about a lot of things. I was afraid I’d lose my speed and endurance. I was fearful that I’d gain weight (thanks, social media holiday posts!). I ruminated about how I could possibly be so hungry even though I wasn’t working out. Subsequently, I fretted about if and what I should eat since I wasn’t running. I felt disappointed when I picked holiday sweets and also felt like I was losing momentum on all my nutrition goals. I was so mad, and I was angry about being so irritated. Truthfully, there were days where it felt like rage was radiating from inside me and that I was going to be stuck in anger forever because my only outlet for my anger was running. And, I didn’t understand why I was so tired! I suspect the persistent worrying and anxiety was part of the culprit! So, although I had a full, engaging week I was actually a mess.

Yet, I survived and nothing that terrible happened. Needless to say, this week has had a lot of ups and downs. Unsurprisingly when I wasn’t allocating time for running I had time to see friends, relax a bit, catch up on my shows, finalize my applications, get my nails done, do laundry, and cook nutritious meals! That’s a lot!

Even so, I missed running every day. I snapped at people who told me “you’re fine” or “don’t worry”. I felt jealous when people sent me ‘Snaps’ of their running adventures. I felt like an impostor because I didn’t do a Turkey Trot or take advantage of the unseasonably warm weekend weather. I spent hundreds of dollars on running gear because all I could think of was running. I convinced myself that my passion justified the expenses. The good news is, soon I’ll be back at it, and I’ll pick up where I left off with marathon training!

Speaking of which, I am currently a mentor with an organization called Dreamfar High School Marathon. Dreamfar High School Marathon challenges high school students to reach their full potential—physically, socially, emotionally, and academically—through a mentor-supported marathon-training program. Dreamfar offers students a judgment-free, non-competitive environment in which they can test their physical, social, and emotional limits. With incredible team unity, unyielding support from dedicated mentors, and unequaled amounts of fun, Dreamfar students learn to believe in themselves, forging a lifetime memory that lives on in their attitudes, actions, and self-image forever. Dreamfar reaches out to every student in a given school because we truly believe the mix of students from across different cultural, academic and socio-economic lines coming together to accomplish one goal creates a very special and rich experience for all involved.

I didn’t run this week, but I’ll be back logging miles and pounding pavement soon enough. If you’re able to support my running journey and the Dreamfar program, please click here to donate!

See you on the road!

The Truth About A Spoonie Surge

I’m flying!

For the past four days I’ve felt practically excellent! I ran farther and faster than I’m used to, my pain is tolerable, I feel nourished and well rested, and my anxiety is relatively quiet!

Today, someone asked me how I was doing. I excitedly said, “I’m good!”

They looked shocked. My typical response is “Okay [sigh]” or “I’m good, but tired.” So, they asked me, “What’s going on?” I replied that I’m just good and followed with, “it must be a surge”.

A surge for me is when everything falls into place. I am catapulted up just a bit higher than usual. My disposition is literally sunny and optimistic. I basically feel unstoppable, and I do ALL the things. I’m super productive, high energy, attentive, and efficient. I’m like a bolt of electricity [yep – I went there!].

I don’t usually wonder why a surge happens, – it could be the weather, a good conversation, a restful night’s sleep – but especially after a few days I always worry about when it’s going to end, and how hard the crash will be.

You see, if I ride a surge for too long, there are consequences.tumblr_nskfoej3891qzbifxo2_r1_500

Usually these consequences are the result of me pushing my body too far. When things feel good, I feel like I could literally burst through a brick wall without even a scrape or a bruise. I almost always challenge myself too much on good days. I almost always forget to respect my body’s limitations and needs. It always feels good in the moment – I like to feel invincible.

At certain turning point, usually at the climax and right before I start my descent toward an inevitable crash, the idea of how badly my actions are going to hurt comes into my cognitive awareness. A mental space once occupied by the joy of feeling light and energized turns to a cyclical sludge-like head fog. My anticipation of the “crash” [which sounds something like, “It’s going to be so bad I’m going to have to call out of work. Ugh. Whatever. It’s not going to be that bad; I’ll just power through and be “fine”. I’m always fine.” on a loop] is almost always an accurate prediction of how badly I’m actually going to feel. It usually feels like a Mac truck ran over me – twice. That’s how I often describe how much it hurts when I finally find the ground again.

I can get caught in the trap of a good day, overdo it, and tumble dramatically into a “typical” day or even a flare pretty easily if I’m not careful.

After a while, my mind starts to play its own twisted version of self-sabotage. It plays a game of second guessing and trying to precisely identify when the tides will change and the calm will become the storm. During these moments, I think things like, “do I feel as good as I think I feel?”, “This is the peak; it’s all downhill from here.”, or even “I don’t deserve to feel this good.”

When you’re a spoonie, you have to simultaneously think, “how can something that feels so thrilling also be foreshadowing something so bad?”, “I can’t fully enjoy this because I’ll pay for it later”, and, “I can’t just sit around impatiently waiting for the pain to come back. I need to capitalize on this opportunity and do all the things because I feel so good!” Sometimes on a good day I don’t even remember those seemingly interminable stretches of pain – the ones I thought would never end. Other times, I’m sure the good day won’t last, but also I definitely don’t want to be miserable.

I’m not asking for my pain to come back! I’m just sure that it will.

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How do I reconcile the ping-pong-like thoughts in my mind?  It is literally mind boggling.

If left unaddressed, these thoughts can spark some anxiety. Anxiety sparks a need for control. A need for control sparks compulsions. Compulsions, right now, look like increased exercise and attention to food. Increased exercise and attention to food result in exhaustion and pain. Exhaustion and pain cause a need for more sleep. Sleeping while anxious and in pain is an incredible challenge. Which, ultimately means that I’ll be perpetually anxious and exhausted, and possibly risk a flare up until the next time I catch a surge. Which could be weeks or months, and that ambiguity, that yearning, causes me more anxiety.

But, in the meantime, I’m going to soar for as long as I can! Today I feel good! We’ll see what tomorrow brings!