How did I start to walk again?
My case may be unique but you might be able to learn from what I did. It’s worth sharing in case. I had one of those terrible situations that turned out for the best. When I was 0% I had horrendous nausea that meant I was so sick I couldn’t lie down. I was always propped up with pillows and a beanbag at an 80° angle.
I needed help to move and stand but I could slide onto commode by my bed. This meant I could always weight bear and that helped with starting to walk again. But my leg muscles had deteriorated completely, they were thin and skeletal and walking a single step was almost impossible. So I started with that. One step to wash my hands instead of having the bowl beside me. Always having someone there in case I got dizzy or my muscles gave way. |
I did this for months, until I wanted to walk a little further. I had a music stand with a photo book on at the end of my bed, maybe two steps away. My next goal was to walk, turn the page and get back into bed (more like collapse onto the bed at first) but it was a start.
My legs felt wobbly, they ached and I was dizzy from the change in position but I managed it. The elation was amazing. The resting after was pretty hideous. My body knew it had done something big. I needed to rest a lot after that, but I had the new picture to look at while I rested, to remind me of my achievement.
I didn’t try it again for a week or two.
I knew when the time was right to try again because I wanted to do it. It felt right. I couldn’t get the idea out of my head. So I did it again. Same distance, same need for rest, same recovery time.
Rest. Wait. Repeat.
Gradually the length between wanting to do it and feeling able grew less. Once a week, then every few days, then every day. It wasn’t fast though, it was over the course of about six months. There was no “hallelujah, she can walk again” moment. It was a physical workout and I needed to build up my muscles and my stamina without pushing myself too much.
The next stage
I’m not sure when I would have had the confidence to build up to walking further if fate hadn’t intervened.
I was on my own when a small swarm of bees flew down my bedroom chimney. Ten buzzing, angry stinging insects were enough to get me up and moving. I staggered across the hall to the bedroom opposite and this time I literally collapsed on the bed. I was exhausted, sick and shaky from adrenaline, and completely freaked out.
Unsurprisingly this did set me back a lot but once I recovered I knew that I could walk further, so I started to move around my room more often. Going to get things I used to wait to ask Mum to retrieve. I often found myself up and across the room before I intended to move. It was frightening at times but also exciting.
Priorities
I wasn’t keen on using the commode, it’s an embarrassing thing for an adult, so I was really eager to be able to walk to the toilet. As soon as I could, I started to walk to the bathroom next to my room. Again with someone close by in case I needed help and a wheelchair in case I couldn’t get back but on the whole I only went to the bathroom when I felt sure I could get there and back without a problem. If I had any doubts I skipped that day or week and used the commode like normal.
I listened to my body and it always told me what I could and couldn’t manage.
Stuck in a rut
I got to the stage where I could move back and forth to the bathroom but I never ventured any further. I was upstairs so there wasn’t really anywhere to go. My Reiki healer suggested I try walking along the landing and I couldn’t see the point. I asked her what I would do when I got there and she said turn around and come back.
It really did seem like a waste of energy but I’m pleased I did it. Like with taking my very first steps, it was a slow, measured process, led by my body, energy levels and symptoms. Over time I gradually built up my muscles so I could manage more steps without pain or fatigue. It gave me more freedom once I started using my stair lift.
Now
I’d love to tell you I walk miles, climb mountains and run marathons. I don’t. My walking is still limited and I have to use a wheelchair most of the time when I go out but I can get around the house, with chairs in every room to sit when I get there. But I can get around and that, for me, is priceless.
My current goal is to increase the distance I can walk. As before it’s slow, gradual and frustrating. It’s also energy led so I’m taking my time and if the past is anything to go by the strategy will eventually work.
Disclaimer - I didn't see a physio. I pretty much tried to avoid all medical professionals after fairly awful experiences. What worked for me may not be suitable for you. Get professional help if you need it or are at all unsure. I am most definitely not qualified except about my own personal experience.
My legs felt wobbly, they ached and I was dizzy from the change in position but I managed it. The elation was amazing. The resting after was pretty hideous. My body knew it had done something big. I needed to rest a lot after that, but I had the new picture to look at while I rested, to remind me of my achievement.
I didn’t try it again for a week or two.
I knew when the time was right to try again because I wanted to do it. It felt right. I couldn’t get the idea out of my head. So I did it again. Same distance, same need for rest, same recovery time.
Rest. Wait. Repeat.
Gradually the length between wanting to do it and feeling able grew less. Once a week, then every few days, then every day. It wasn’t fast though, it was over the course of about six months. There was no “hallelujah, she can walk again” moment. It was a physical workout and I needed to build up my muscles and my stamina without pushing myself too much.
The next stage
I’m not sure when I would have had the confidence to build up to walking further if fate hadn’t intervened.
I was on my own when a small swarm of bees flew down my bedroom chimney. Ten buzzing, angry stinging insects were enough to get me up and moving. I staggered across the hall to the bedroom opposite and this time I literally collapsed on the bed. I was exhausted, sick and shaky from adrenaline, and completely freaked out.
Unsurprisingly this did set me back a lot but once I recovered I knew that I could walk further, so I started to move around my room more often. Going to get things I used to wait to ask Mum to retrieve. I often found myself up and across the room before I intended to move. It was frightening at times but also exciting.
Priorities
I wasn’t keen on using the commode, it’s an embarrassing thing for an adult, so I was really eager to be able to walk to the toilet. As soon as I could, I started to walk to the bathroom next to my room. Again with someone close by in case I needed help and a wheelchair in case I couldn’t get back but on the whole I only went to the bathroom when I felt sure I could get there and back without a problem. If I had any doubts I skipped that day or week and used the commode like normal.
I listened to my body and it always told me what I could and couldn’t manage.
Stuck in a rut
I got to the stage where I could move back and forth to the bathroom but I never ventured any further. I was upstairs so there wasn’t really anywhere to go. My Reiki healer suggested I try walking along the landing and I couldn’t see the point. I asked her what I would do when I got there and she said turn around and come back.
It really did seem like a waste of energy but I’m pleased I did it. Like with taking my very first steps, it was a slow, measured process, led by my body, energy levels and symptoms. Over time I gradually built up my muscles so I could manage more steps without pain or fatigue. It gave me more freedom once I started using my stair lift.
Now
I’d love to tell you I walk miles, climb mountains and run marathons. I don’t. My walking is still limited and I have to use a wheelchair most of the time when I go out but I can get around the house, with chairs in every room to sit when I get there. But I can get around and that, for me, is priceless.
My current goal is to increase the distance I can walk. As before it’s slow, gradual and frustrating. It’s also energy led so I’m taking my time and if the past is anything to go by the strategy will eventually work.
Disclaimer - I didn't see a physio. I pretty much tried to avoid all medical professionals after fairly awful experiences. What worked for me may not be suitable for you. Get professional help if you need it or are at all unsure. I am most definitely not qualified except about my own personal experience.
Claire Wade. Studio 17659, PO Box 6945, London, W1A 6US
This site is written by someone who is severely affect with ME and is compiled as a result of personal experience and research of other people with ME and their families. It is intended for information and guidance only. It is not intended to replace medical advice. Readers are strongly urged to consult a professional medical practitioner for a proper diagnosis or assessment before trying any of the treatments or medications outlined. As with all medications, always consult your GP, specialist or pharmacist and tell them about other medications or herbal preparations you are already taking; always read the label and patient information leaflet.
The contributors to this website are not medically trained but all live with or have significant experience of ME. The tips may not be suitable for everyone. No responsibility for loss occasioned to any person acting or refraining from action as a result of any statement in this work can be accepted by the author.
No part of this work may be reproduced or transmitted in any form or by any means (photocopying, electronic, recording or otherwise), except for personal or non-commercial use without the permission of the author.
Claire Wade has asserted her right under the Copyright, Designs and Patents Act of 1988 to be identified as the author of this work.
The contributors to this website are not medically trained but all live with or have significant experience of ME. The tips may not be suitable for everyone. No responsibility for loss occasioned to any person acting or refraining from action as a result of any statement in this work can be accepted by the author.
No part of this work may be reproduced or transmitted in any form or by any means (photocopying, electronic, recording or otherwise), except for personal or non-commercial use without the permission of the author.
Claire Wade has asserted her right under the Copyright, Designs and Patents Act of 1988 to be identified as the author of this work.