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!):
- 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.
- 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.
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Congratulations — that’s great news — and you’re moving forward! I’m sure I don’t have to remind you to proceed SLOWLY. While my condition(s) aren’t quite as severe, I’ve lost the strength, flexibility and endurance that I had as a classically trained ballet dancer. The training and performance skills required are akin to those of a high-performance athlete; I still can’t believe I’ve lost my core strength and therefore balance, let alone the ability to stretch or lift what I once could, and walk with crutches. Almost 15-years of my life — blood, sweat and tears — is gone. Like you, however, I am not giving up. (I admit I have a similar stubborn streak, and have fired more than one physical therapist myself.) Again, great progress. Hang in there.
Hi Grace, ballet is so demanding on the body, I love it but could never do it. I know you said those 15 years are gone, and I feel the same about my 6, but the memories of active living keep me going. Thanks for sharing your thoughts!
Jamison, es una gran noticia, me alegro muchísimo!
Eres sabio en tu decisión , realmente es el enfermo quien mejor sabe hasta dónde puede llegar. Un gran abrazo.
Thanks Trini!
Thanks for coming back, I missed your comments!
Looking great, J! I was interested in your PT experience. When I was doing it for my back it just made it worse. Glad you are your own advocate. I learned to be.
Thanks, yes, it’s always an adventure!
So right..def no help from pt. Dont put expectations on yourself, just modest goals. Lean up as consistently as your body allows when laying down.
Will help in transition to being fully upright.
Shoot for sitting up in am and again in pm for slightly longer periods, as body allows and absolute hardcore rest between. Same when walking again.
Thanks Mike! I can definitely do the hardcore rest part. I’ll work on the others. Thanks for reading!
This is a great news Jamison ! Is saline IV helping you in this period ? Congratulations !
Thanks! Yes, still getting a liter everyday with vitamins. How bout you?
*does a sit-up cheer with poms poms and all*
agreed about the declined “help” and you knowing much better what you need/can handle than they can, once I got a little better I just started to garden one day, sitting on my ass in the grass, removing weeds (there’s now weedless circles throughout the lawn), we wanna be active so badly that other’s telling us to or even how is just….silly
I always think my brain fogged sentences are weird, are they?
And always smiling! You write so very well about M.E. – saying it as it is, which is something I cannot do. Yes, you absolutely need to just listen to your own body and not someone who is totally ignorant of the illness. It’s wonderful news that you’re starting to sit up…just expect to go slightly backwards occasionally. It’s good that you’re stubborn, you need to be.
Happy to hear you’re improving.
Jamison, if you don’t mind what is your current treatment you think helping the most. I do IV fluids once a week but can’t seem to handle minerals in them despite I have more mobility than you do…curious what nutrients you add to your IV. So happy for the view….we take the moments that are given but at the same time for myself every good moments takes me back to when life was much more simple. xo Heather
Hey there. I add infuvit which is basically an IV multi-vitamin to the saline. And I’ve been doing it a few times a week and regular saline everyday. So lots of fluids. You probably don’t need it more than once a week but maybe you could try it every other day. It’s a guessing game.
So glad you’re improving enough to be able to sit for a few minutes!
Thanks Shelley!
Wow! It’s amazing how open you are about this! I actually had to Google what me/cfs was. Keep on keeping on!!
Thanks Monique! It’s free therapy for me 😉 I looked at your blog and IG, very cool!
it is so helpful to read of your experience and your perspective. thanks for sharing all of this. and congrats on getting stronger!
Thanks!
I had the pleasure of meeting some of your family at a past support group meeting….wonderful people. I am so absolutely thrilled for you and hope you continue to improve. My best to u!!! Monica
Hi Monica. Oh cool, I remember when they went to the support group. I was much sicker then. Thanks for finding me!