The View is Nice up Here!

Lately, I’ve been trying to sit-up without help at least once a day. Some days it’s just not possible, but on good days I’ve been able to pivot my body and hang my legs off the bed. Because it is on risers, however, my feet cannot touch the ground and I have to use the side of the mattress to support my legs. Still, it’s nice to position my body at a more vertical angle — lowering my feet below my waist. 

Here are some photos from my attempt the other day:

I usually crash after such an attempt, as it puts a lot of strain on my leg, shoulder, and abdominal muscles. But for the most part, my body can handle it. During this last attempt, my blood pressure, which is usually around 110/65 sitting on my wedge pillow, was 122/77 as I hung my legs off the bed. My heart rate was steady and around 75 BPM, another good sign considering it has been above 100 BPM — nearing my anaerobic threshold — during other attempts at elevating. And, although I didn’t time it, I probably held my body upright for a couple minutes — long enough to take some photos and do a blood pressure reading.

Some people have suggested that it might be easier if I work with a physical therapist, but I refuse for a few reasons (I’m not stubborn, I promise!):

  1. Most physical therapists, especially where I currently live in rural California, have no idea how to rehab someone with severe ME/CFS. And for that matter, neither do most physicians, even the exceptional few who have some semblance of understanding of the disease. I had two doctors push physical therapy on my while I was literally too weak to move. Even a family member of mine, who was a nurse, urged me to do physical therapy, citing that inactivity would only make me weaker and my muscles atrophy. Which is true, but there’s a difference between being too weak from inactivity and being too weak to rehabilitate because you have a disease that won’t let you recover physically. The truth is, rehabbing someone with ME/CFS is all about timing and it is incredibly difficult, nearly impossible. You must go at a snail’s pace and only begin when the patient’s health has begun to improve, which can be almost indetectible. It’s like trying to walk in the rain with an umbrella and not get wet — it can be done, but it takes an obscene amount of patience. I say this because during my sickest days — about a year and a half ago — I was forced to work with a physical therapist in order to qualify for disability benefits. The woman who came to work with me lifted my lifeless limbs, not knowing that my body was too weak to rehabilitate. She didn’t listen when my family told her I needed to stop. She continued lifting my arms over my head as I screamed in pain. It ultimately made me sicker, much sicker. And I then came the conclusion that rehabbing a body with ME/CFS is not unlike rehabbing a broken leg — you can’t start to rehab until the bone has healed. Most physical therapists just don’t understand this, and instead, they think a cookie-cutter approach can be applied to people with ME/CFS. 
  2. I’ve been certified a personal trainer since 2009, and I’m pretty familiar with the principles of physical therapy. So in my eyes, there is nobody better than me to bring my body back to mobility. Okay, maybe I’m a bit stubborn, but it’s true, nobody knows my body like me and no working physical therapist has knowledge of ME/CFS like someone with the disease. 

All of this has made me reflect on how far I’ve come in the last year or two. A year ago I was simply not able to start physical therapy. I couldn’t even think about it. Now, however, I can actually work on getting better instead of just waiting for my body to heal. I can once again create goals for myself and gradually work toward them. 

There was a time when I couldn’t lift a pen, now I can lift my body weight, and that’s a huge accomplishment. What’s more, my body continues to get stronger, and while my physique has diminished since my days of bodybuilding, I’m still proud of what it can achieve — even the most impaired body is a miraculous thing. It may not be able to lift three times its weight anymore, but for the disadvantages it faces, my body has achieved some more impressive feats. 

Okay, that’s all for now, thanks for reading! Please subscribe for more.