The process of becoming ambulatory again is one I’ve known would be difficult since I first became bedridden in January 2015. So much so, I’ve made sure not to become attached to forward progress. I knew it would be such a grueling and tedious process, I thought I wouldn’t be able to do it. Honestly I was and still am prepared to fail. And this is coming from a former personal trainer and bodybuilder who told people everyday that failing is not an option.
Well, let me just say, it doesn’t matter whether you think failing is an option, because it absolutely is an option, sometimes it’s the only option. Not considering failing as an option is not considering reality, which is fine, but just be prepared to be surprised when life throws a wicked curveball at you and you actually do fail.
That being said, I have never been afraid to fail and certainly have never let it stop me from moving forward. The wonderful part about this thinking is it often sets you up to succeed, and when you are successful, it is amazing how much easier it can be.
In my case, progressing toward standing and getting out of bed again has been one of the hardest things I’ve ever done — harder than deadlifting three times my body weight. If not because of the unimaginably slow recovery process, then because of the harsh psychological aspects. The mind games one plays while trying to go from bedridden and completely horizontal to standing are ruthless. But if you let your better judgement prevail (assuming you have better judgement) then progress will usually come. It may take a ridiculously long time, but moments like this can happen….
(Please igonore my puffy face, hydrocortisone is a wicked drug)
So now is the time I ask for your input. I know I must find my way to becoming ambulatory again, but I always like to get advice and input from other people, especially those with ME/CFS. So please leave a comment below if you have any experience with transitioning out of bed.
And if you have any advice or recommendations about wheelchairs please mention that as well. Because I still have a lot of orthostatic intolerance I think I will need a wheelchair that reclines, at least at first. Also, my bed is on risers, I think it’s almost 3 feet tall, so I need to figure out how to transfer myself into a wheelchair without injuring myself or using too much energy.
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89 thoughts on “Almost Standing ”
Jamisoan—- so privileged to see that video—-you are such a fighter and we (M and I) send love and admiration to you. What a fighter!!!
I will see you soon– I love you so much.
Love you both! See you soon!
Jamison, you are so brave and your part in Forgotten Plague was so important to understanding the disease and how it can progress.
Thanks for this video.
I do not have the issues you are experiencing (although I did faint on my tilt table test) but your OI is much worse so I don’t have any recommendations for you. I just wanted to say thanks for this post.
Thanks Lisa. You’re very sweet!
do you have a steel frame walker? if you do, you can inch yourself closer to the floor while supporting yourself. when feet are on the floor, you can practice lifting them up one at a time while holding the walker for support. after some time you can stand up the same way. I’m just concerned that your bed is so high it will cause issues when you go to sit back down from standing — it will feel higher than you expect/can manage. I used to have to lower the hospital bed before returning. You can lower the whole bed (that is the proper PT way) so that you have to work harder to stand up, but again it’s adding stress.
a hi-lo hospital bed would be ideal for learning how to sit, stand and for doing a stand and pivot transfer to a wheelchair. the first kind of transfer to learn is the ‘slide’ — you match up the bed height to the height of the wheelchair, place the chair right beside the bed, put the arm up, and scooch on over, with someone grabbing the back of your boxers to give you a boost. yes, they will go up your ass until you learn how to do it yourself.
Hi. Well that sounds fun. Haha. But I think you’re right I’ll have to lower the bed.
Querido Jamison, eres admirable, no pienses en si tu cara está hinchada o tu cuerpo distinto, eso no importa. Nunca he llegado a estar en tu estado, por tanto, no puedo darte consejos, solamente apoyarte.
Ánimo, ya estás más cerca de tu meta!
Thanks. You are too kind. And great advice. I’ll try to ignore the puffy face. Vanity sucks haha.
Jajaja, Jamison, sinceramente creo que el hecho de colocarte sentado en la cama tú solo, sin ayuda, ya es excesivo…busca ayuda para esos momentos y tendrás una pequeña reserva para, tal vez, permanecer sentado un buen rato hoy y dar unos pasos mañana, pero con ayuda, ok?.
Un gran abrazo!
Tienes razón, la ayuda es algo bueno. Gran abrazo para ti. Utilicé una aplicación de traducción para escribir esto, así que no me lo reproches si es malo.
Was going to weigh in with walker recommendation but that’s covered. Overall I’m concerned about face plant (been there) as it would suck to injure yourself at this point. Could you rent one of those wide leather belts for a while so someone had something to grab onto? Wedgies are overrated.
Are you able to drink a glass of water? I found getting a couple of those down the hatch, waiting 10 minutes then trying to get up made it actually possible, wo it the OI kept winning.
Eventually I got the Florinef, which you have said is not kind to you. But maybe try again in ridiculously small amount. Have found my body keeps changing and what it could not tolerate before, it works now. Happened with various therapies. Only you know what works for you.
You look good, the HC has not turned you into the StayPuff Marshmallow Man. You were so lean before it must make you a little crazy. I am on a high dose right now and am so puffy I avoid sharp objects.
Hi there. I’ve been trying an electrolyte drink but I also need the iv still. I might try Desmopressin too.
Hi Jamison, so happy you’re able to take some little steps towards getting up! We’re all pulling for you.
So great to see this video, gratitude for those small acheivements. I agree with you about accepting that you may fail and have seen evidence in my own recovery that the more I accept I might never get better the more I can achieve step by slow step. The mental stuff is such a challenge and the constant vigilance of all the horrible body symptoms takes its toll. I am working on trying to focus on my external environment to divert my mind from obsessing on every bodily sensation. It is helping me to allow those symptoms to be there without amplifying my anxiety. I hope you keep making progress.
Hey Lisa, you nailed it, I too become hyper-aware of my body. It’s good and bad. And I’m always looking for distractions. Thanks for your comment.
Your bed is a little high maybe, maybe put a cushion or foam so you can rest your feet as you sit up. I spent some time sitting up straight first as you are doing and getting used to that. I then sat in a hospital style high-backed arm chair for a while. You’re doing well, ace.
Thanks Henry! You’re right, it’ll come in time. A lounge chair sounds nice.
Shi, J! I can imagine how frustrating it is. I have a bar on the side of my bed, it has long bars that hold it steady because they go between your mattress and box springs. I would think you’d want to remove the risers unless they aid you in different ways. I can’t stand or steady myself on my legs, that’s why I have a wheelchair. I rent one. I need to get fitted for one, probably electric type. I hate that thought as I’m sure you hate the idea of getting any type of chair at your age. It’s a real pain in the a– of course, but I don’t have a choice. Whatever you choose, be careful. You would not want to fall and injure yourself. I used a walker but legs just collapsed under it, so had to stop using it. Good luck. Btw, I’m giving you my fourth “Proud of Myself” badge….no worries, but hope it brings more people to your blog. I am very proud of your progress, determination, and perseverance! https:rugby843.blog/proud-of-myself-badge/
Thanks! That’s helpful to know. I think I definitely need something to steady myself.
I don’t see a chest strap heart rate monitor in your picture – remember not to exceed your aerobic limit (.6 x (220-age)) when trying to become fitter, especially when you’re starting.
It’s easy to go over, but it’s supposed to wipe you out a lot longer later.
I’m about to do cardiac rehab, and my biggest concern is making sure the PT people understand, and don’t push me over the limit. They’ll have me on their monitors – but I already asked, and I won’t be able to see their numbers, so I will wear my own chest-strap monitor and wristwatch thingy.
Supposedly, if you exercise under your limits, you can slowly improve without continuously crashing yourself.
Look it up; don’t take my incoherent explanation here as anything but a clue. If we wait until I’m coherent, I’ll probably forget.
I have to go look for something in writing about this Dr. Klimas protocol before I go for the intake interview.
i saved some links about this for myself:
and another by him:
i also have a paper with excerpts from this to show any new PT or OT: (i include the part about severely ill patients)
I’m going to check them out; I meet with the cardiac rehab PT on Thursday, and the last thing I need from rehab is a crash.
Thanks Alicia. As a trainer I’m very familiar with the anaerobic threshold yet my education did not prepare me for this condition. I was taught the exact opposite: going above the threshold is good. So that’s a hard thing to adjust in my brain. Thanks for reading!
As far as I know, because we CAN’T produce energy aerobically (that’s why we’re so tired all the time), we can’t use conventional wisdom to get better.
If you try, you just crash again.
If you stay within your limits, I believe you can slowly get fitter, sneaking under the ceiling. If you can exercise more often, you can improve. But you have to be very careful.
As a former very healthy person – this must be extra hard for you. I’d love to hear you blog on this if it works for you.
The AT is lowered in ME/CFS and lowered again in PEM. Here’s a great paper.
Oh thanks! That’s great info!
What a wonderful video, Jamison! You’ve made such progress!!! Congratulations! 🙂
By the way, I think you had previously mentioned being on Florinef. I might be going on that for my POTS because the nonpharmacological measures aren’t enough. What was your experience on it?
Hi. Thanks! I didn’t do well on it. Only lasted a couple days. Start on a low dose is my advice.
I hope this will get easier and easier for you! Hang in there.
Go, go, go!!!
Way to go Jamison! That’s great progress!
I am so sorry. And will be praying for you, hope you get better.🙏🏻❤🙂
I am a PT who has ME/CFS and NMH. Hydrate with oral rehydration solution and try some compression socks. If they are the knee high kind they aren’t too hard to put on. If you buy ones for traveling they aren’t too expensive. From your video, I can see your right foot more than the left turning reddish purple from the blood pooling into it. Resting your feet on a step stool while trying to increase your sitting tolerance will keep your hips bent more and slow down the blood flow to your feet and help you save a little energy.
You could look into a transfer pole to hold onto to getting in/out of wheelchair. (Basically it is a pole that goes floor to ceiling.) A slide board could help you get into the wheelchair, but with the height of your bed it wouldn’t work well for getting back to bed. Besides a wheelchair that reclines, get one that has foot rests that elevate. Another thought for when you are ready to transfer into a chair is to use a recliner at bedside. If your back is supported, you will use less energy while sitting which should make it easier to slowly increase time sitting up. Using a hoyer lift to get into the recliner at first is another thing that would save energy even though it would be hard to accept.
Please email me if you want any more input. And don’t push yourself too hard. Thanks for sharing your journey with us.
Hey Karen, thank you so much! That’s exactly the advice I was looking for. Funny you mention the pooling blood. After my mom shut off the video she commented on how red my feet looked. Your advice is making me second guess my abstinence from using a physical therapist (I’ve had bad experiences). Are you available for hire? Seriously though, I would love to have your email so we can chat. Thanks for caring!
I put my email in when I commented, along with my full name. If you don’t have access to it, I’ll post it. 😉
I can’t find it but here’s mine: Jhillzer07@gmail.com. Thanks again for your advice!
Karen, thanks for this. This is the type of info that is lacking. Bateman Horne Center and Solve Me may be interested in posting as they embrace education.. A kind of PT and OT protocol for ME/CFS seems daunting but if we start with one profession, then another and another and soon patients will be at their optimum, until a treatment or cure is found. I had a highly intellient Registered Massage Therapist say she didn’t feel comfortale treating me from her home as she didn’t have backup should something go wrong.
I love your comments on failing. Thanks
Thank you for reading them!
Hi Jamison- thanks for this blogsite and for such a good article. I too have OT and ME and it is a LOT to put up with. I ‘manage’ OT with Electrolyte and lying down. I have not tried compression socks, as someone on here recommended, but will do so.
I got a walker 6 weeks ago – it is one of the chunky ones with brakes and a seat ( brilliant!). I found that parking it with brakes on next to the bed, means that i can use the handles to help to haul myself up out of bed and into sitting on it.
This is such a good blog- I really admire your honesty and am recommending it to my guy friends who have chronic illnesses.
Wishing you good healing and good writing.
Thanks Helen! Keep in touch.
I feel an excitement inside because I KNOW you CAN do this soon. You have made my day. A true worthy be proud of yourself winner 🤗
Thanks! I’m glad.
I will be watching you with interest 😉 again I feel a vibrational energy around you 🙂🙃🙂
Very sweet. Thanks!
I’ve transitioned from long periods of bed a few times without professional input, but I was able to get to the bathroom during that time, so my experience was different. As I’m sure many have said, take it carefully. If you think you can get up twice, do it once. Keep a reserve if you can. And just pace yourself really gently. Maybe try getting up once a week to begin with & then gradually increase when that once is solid & do-able.
I think there is a formula for the body adapting to something new (number of repetitions), so it could take several goes before you’re ready to transition to a mobility aid. And as you probably realise you will feel more wiped at times, but don’t lose hope. I found my ankles & achilles were really stiff, (& my back was really bad) so I imagine help in that area could be useful.
As I say, I did alot through trial & error & my experience was different.. just finding my way. You may experience ‘2 steps forward & 1 back’…but don’t give up. And as someone has mentioned you will have plateaus, which I find hard. But with careful pacing they can be overcome…well you already know this.
Maybe noting which parts if the process are low, medium, high, super high…it may all be super atm, & what aid or strategy might help lower that on some point, but in time that will change.
There is such a variety of mobility aids. I have a fair few. But someone closer to your experience may give better pointers. But a powered wheelchair if you feel up to handling it, but being pushed may be better to start with, as it’s astonishing how cognitively tiring it can be while you’re monitoring how you feel at the same time. Just be gentle with yourself, keep celebrating the victories & any setbacks see as a learning curve. So happy for you. It must feel absolutely amazing. Well done you for persevering & being so patient.
I think you’re right, there’s a formula just gotta find it.
I’m a retired occupational therapist. You shouldn’t be trying to do this on your own, even with professional advice from therapists on the internet. You should have a PT working with you to outline each phase of the program and gauge your progress. A simple rule of thumb in rehab is two days of therapy for every one day of deconditioning, which is the umbrella term for what you’re dealing with. There are specific steps to recovering from Orthostatic Hypotension and specific steps of which and how much activity and exercise to do. A therapist should be assessing your needs and deciding on wheelchairs, walker, cane, etc.
Hi Judy, I appreciate your opinion and input, but unfortunately PT is not an option for me. I’m not sure if you are familiar with MECFS, but unfortunately basic rules of PT and OT don’t apply. Although I wish they did. Even if I could afford 4 years (2:1) with a PT, there are none competent to work with MECFS in my area. And I don’t think I would allow someone else to pick out my wheelchair anyway, I mean I might ask my mechanic for his opinion but I wouldn’t let him pick out my new car.
Heyy Jamison it’s Megan it’s soo amazing to see ur progress u have come a long ways an I’m so proud of u I ask ur mom all the time when I see her how you are doing you are so close to standing I loved the video n I hope to see more of you ik ur mama is so proud of u an so am I u have come along way since the beginning keep it up an stay strong you got this 🙂
Thanks Megan! That’s very sweet of you!
Judy, CFS/ME is an illness, not deconditioning. Medical professionals who think it is deconditioning are ill-informed.
Well said, Barbara!
CFS/ME causes deconditioning, not the other way around.
great to see man! Thinkin about ya
Thanks my man!
Being unable to get out of bed or stand up is definitely NOT failing.
Failing is being unwilling to try. Always remember that.
I follow the blog of a young man with Spinal Cord injury (after a 30 foot fall) and I well remember the day he found he could move his little pinky (toe) slightly. I’ve followed his gruelling will to stand over some 3(?) years. His willpower is awe-inspiring. He also has an amazing team helping him. I know that is not ME (and having high-functioning FM/CFS myself I have read many stories like your own).
Just take small ‘steps’ at a time. Sitting for longer and longer periods each day/week is the start. Secondly, get someone to stand either side of you to take some of the strain and fear of falling or passing out.
And never, ever give up wanting (to stand and/or walk again).
Hi Vicki, Thanks for your positive words. I suppose you are right, failing is being unsuccessful and even when I “fail” I’m still trying which is its own version of success. Thanks again for your kindness. Also I’d love to read that blog if you care to share it.
The site I’m talking about is https://arashrecovery.com
If you have the time and energy, go right back to the beginning of Arash’s blog just after the accident where he is paralysed from the chest down and is almost a quadriplegic. The starting point is what makes the story worth reading.
Arash just never ever gives up.
There is no comparison between having a SCI (Spinal Cord Injury) and having ME, so I’m not suggesting any comparisons. Arash’s focus and positive attitude are what counts.
It’s all about the Mind.
Finding ways around obstacles.
Finding new ways of living.
Finding joy in the simple things in life.
Oh great, I’ll check it out right now. Thank you!
How are you doing
Doing okay. How are you?
Horizontal to vertical in one go is a big jump – dont know if you have tried horizontal to legs propped at an angle eg 45 degrees – or maybe less – first to get used to angle before going on to full vertical. Great to see your progress 🙂
Great advice. Thanks!
Congratulations! This is great progress. The only advice I have is simply to do what you can when you feel you can. Sharing your journey with ME/CFS is very helpful to other sufferers, so thank you as well.
Thanks June! Will do.
Great just ate tacos, did sleep good last night.
Hi Jamison. I’m aiming towards being hoisted reclined at first rather than sitting on edge of bed – which feels way too much right now. I thjnm my system is super overloaded and I’ve not found the right treatment protocol yet. A transfer board is also an option. Your bed might be a bit high for sitting transfers so I’d ask to see an OT.
Regarding wheelchairs what I thjnk people with your condition needs is tilt and recline wheelchairs. Tilt is where the whole air tilts backwards with your hips kept in whatever position you were in before. With recline added on top you get a cradled affect but crucially I used to find tilt made me feel relief from OI in a way that supported my core muscles at the same time.
I know when I stop being bedbound ill be looking at powerchairs that tilt 50° and recline 170° which is more than the standard. In the UK that’s mostly the permobil f5, invacare tdx ultra low maxx, quickie Jive M2 Sedeo Ergo. In the US that’s a big chunk of permobil chairs + the motion concepts company that makes these adaptations. If you’re looking at a manual chair it’s harder to find ones that do all this but the quickie iris looks good, and there are probably some others.
Good luck, take it slow. Any tips on recovery? Do you think your saline or other treatments have been the biggest game changers? I’ll be hitting month 39 entirely bedbound in 2 weeks.
My approach is to be able to sit longer periods tilted /reclined rather than shorter periods on the edge of the bed or whatever. This is easier to control in a profiling bed though.
Hi. Thanks for the advice. I think you’re right about the height of the bed. My recovery has definitely benefited from regular saline ivs. Have you tried?
I haven’t, no. Very difficult to obtain in the UK. You can only get them privately and I don’t even have a POTS diagnosis due to being too ill for a tilt table test for a number of years… Although since being bedbound I’ve not been well enough to sit up long enough for the numbers to change much which is confusing. Do you have a picc line for it or do you have to have a canula each time? I know of one UK person who is using this treatment. She paid privately for a line and is paying for the saline privately but fighting the NHS I think. I don’t know her so onlu know what I remember from her blog.
I’ve heard it’s difficult to get it in the UK. Seems so weird since there’s good healthcare over there. The iv depends on my veins. I get a peripheral line sometimes but a picc when my veins won’t show.
Is all of that done at home?
The NHS is wonderful but doesn’t give us access to as many things as are available in the UK, though of course what we do have access to is free. I’ve had to pay privately for a few different things over the years. Either due to waiting lists, because nobody would do a home visit, or because in the case of my functional/ecological medicine dr there’s just nothing like it on the NHS. Then paying for those prescriptions privately because the gp doesn’t agree and so on.
Unfortunately the current government seems set on privatising healthcare over here too in a way that is subtle but definitely happening. It’s like they’re trying to make the NHS look awful when really it’s because they’re cutting services. Then they outsource to companies. Hopefully we won’t ever end up with the situation of inequality that you have over there, though I know it’s a fear for many. I just had a read about some of your medical costs. Eek!
Yeah it’s all fine at home which is partly why it’s so hard to get insurance to cover it. It’s a frustrating game to play except it’s not really a game, it’s my health. Haha. Anyway. Hope you can find some treatment over there.
I came across your blog article on FaceBook the other day and I’m in awe of your strength and perseverance. I’ve been diagnosed with ME/CFS summer of 2015 after falling ill in January 2014. I’m housebound and at times bedbound since falling ill and since end of January this year mostly bedbound. At least for now. I have been recently researching wheelchairs and after reading this blog was trying to figure out how to let you know of a website I found where the wheelchair I found meeting my needs and requirements. Finally, I’ve figured it out. I’m not sure if you’re still in search of one, but this may be what you’re looking for in a chair. I’ve added the link, I hope that’s ok. I haven’t purchased one yet, but I need to speak with my GP next week about it and am debating if should wait until after I go to the Complex Chronic Disease Program to speak with the doc there. I’ve yet to be treated by a physician who is familiar with ME/CFS and am looking forward to speaking with a professional who is educated on it. I’m hoping he or she will know more than me on the topic. Anyway, a bit off topic. I hope you find this helpful and I wish you good health and happy life.
Hi Denise. Thanks for the link. I will check it out. I’m still searching for a chair and trying to figure out how to lower my bed so I can use a transfer board. I hope your appointment goes well. We have a lot good mecfs doctors here in California but depending on where you are it can be a trek.
I’m on Vancouver Island, British Columbia, Canada. I’m hoping I don’t need to travel much further than mainland BC for a doctor and this program is suppose to help GPs with their ME/CFS patients. I’ve heard positive things from a few people that have gone there recently. Good news for you is the link I sent you regarding the wheelchair is a company in California. Much closer to you than me, but at least shipping costs are free to US and Canada.
I’m not sure of and I don’t recall the mention of it on the website was transferring your body from one surface to the chair and vise versa. I did send them an email asking some questions I had and they promptly responded with answers to them. I’m sure they must get asked these questions on a regular basis though. I have special needs nephews who are wheelchair bound and need assistance with their daily lives. They have a tracking system with slings to help move them from bed to chair, chair to specialized bathtub, etc… The ceiling in their house makes me think of tram track as it’s throughout the house. It doesnt just help them, it also helps the caregivers to keep everyone safe from injury.
Oh wow. I know a few people with mecfs in BC. Interesting. I’m hoping to get a starter wheelchair before I buy an expensive one. Those slim ones are pretty cool.
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