Recovery
This is a strange section for me to write - I'm not recovered but I'm no longer as ill as I was. I want to share my experiences of how I improved and the techniques I'm still using.
The most important part for any increase in what you do is only do what feels right, trust your instinct and don't push yourself. Do less than you think you can and only increase again once your energy and symptoms have leveled out again.
You know what's right for you and your body. Trust it.
The most important part for any increase in what you do is only do what feels right, trust your instinct and don't push yourself. Do less than you think you can and only increase again once your energy and symptoms have leveled out again.
You know what's right for you and your body. Trust it.
Pacing
I've said it once and I'm going to keep saying it. It's the only thing that ever helped me and I tell everyone when they ask me how I'm doing better, Pace. Rest.
Read more here...
Read more here...
Light Sensitivity
I was in a darkened room 24/7, eye mask, dark glasses, blackout curtains. The works. I didn't try to force myself into the light. Forcing bad! Small, gradual increase - good.
I knew I wanted to start looking out my window so I started by just opening the curtain the teeniest, tiniest amount. My bed was by the window and I had a large crystal I used to prop open the corner of the curtain. I didn't look outside or stare at the light and I kept my dark glasses on.
I did that for weeks and weeks before opening the curtain a little more. It was slow, gradual and on bad days I didn't do it at all.
I started to peep out at the birds, just a few seconds and then eye mask on. Rest.
The length of time I could look out increased and the amount of light I let in got larger until I could pull them back a sizeable way.
One day I forgot to put my sunglasses on when I looked out and it wasn't a problem straight away. The moment I realised and it was too bright I put the glasses on.
I started to build up to not wearing my sunglasses at all.
Slow, steady, gradual.
By gradually getting used to the light in my room, I could eventually go outside without needing my sunglasses. I still use them whenever it's bright out or sunny but things are much better.
If you can't prop the curtain open like I did you could get someone to do it for you.
Lighter curtains that open too far? Use clothes pegs to keep the majority of the gap closed and just a tiny bit open at the bottom.
I knew I wanted to start looking out my window so I started by just opening the curtain the teeniest, tiniest amount. My bed was by the window and I had a large crystal I used to prop open the corner of the curtain. I didn't look outside or stare at the light and I kept my dark glasses on.
I did that for weeks and weeks before opening the curtain a little more. It was slow, gradual and on bad days I didn't do it at all.
I started to peep out at the birds, just a few seconds and then eye mask on. Rest.
The length of time I could look out increased and the amount of light I let in got larger until I could pull them back a sizeable way.
One day I forgot to put my sunglasses on when I looked out and it wasn't a problem straight away. The moment I realised and it was too bright I put the glasses on.
I started to build up to not wearing my sunglasses at all.
Slow, steady, gradual.
By gradually getting used to the light in my room, I could eventually go outside without needing my sunglasses. I still use them whenever it's bright out or sunny but things are much better.
If you can't prop the curtain open like I did you could get someone to do it for you.
Lighter curtains that open too far? Use clothes pegs to keep the majority of the gap closed and just a tiny bit open at the bottom.
Listening to Music
I missed music so much! It was something I took for granted and I was desperate to get back to.
I started by getting my brother to put on music in a room at the far side of the house. I listened for as long as I could with just one ear plug in and my head on the pillow so the sounds were filtered through the pillow. When it got too much (about ten seconds the first time) I put the other ear plug in and blocked it all out.
Over time I increased naturally, allowing my body and energy tell me when it had had enough.
It wasn't every day, it was just when I felt up to it. When I could listen to more I started listening to music in my room, turning it off when I had enough.
Slow, steady, gradual.
I started by getting my brother to put on music in a room at the far side of the house. I listened for as long as I could with just one ear plug in and my head on the pillow so the sounds were filtered through the pillow. When it got too much (about ten seconds the first time) I put the other ear plug in and blocked it all out.
Over time I increased naturally, allowing my body and energy tell me when it had had enough.
It wasn't every day, it was just when I felt up to it. When I could listen to more I started listening to music in my room, turning it off when I had enough.
Slow, steady, gradual.
Going Outside
I worked on my noise and sound tolerance before I tried going out so I wasn't completely overwhelmed. I still had dark glasses on, a baseball cap and ear plugs with me. I sat in the garden for a few minutes and then came back in to lie down in a darkened room.
I built up to being outside for longer and longer until I felt able to go round to a shop in the village, about two minutes from our house. We went in the car and I had my dark glasses/hat on. We chose a quiet morning where we were the only people there. I used my wheelchair and stayed for a few minutes and came home. Then I rested. A lot!
I had pay back, pain, fatigue, worse symptoms but it didn't completely set me back, so I knew I was ready. I didn't go out again for weeks and weeks afterwards but the next time I did I had a little more confidence, some of the fear wasn't as bad.
I built up to going out for longer, going further and always doing lots of pacing before and after.
Slow, steady, gradual.
I built up to being outside for longer and longer until I felt able to go round to a shop in the village, about two minutes from our house. We went in the car and I had my dark glasses/hat on. We chose a quiet morning where we were the only people there. I used my wheelchair and stayed for a few minutes and came home. Then I rested. A lot!
I had pay back, pain, fatigue, worse symptoms but it didn't completely set me back, so I knew I was ready. I didn't go out again for weeks and weeks afterwards but the next time I did I had a little more confidence, some of the fear wasn't as bad.
I built up to going out for longer, going further and always doing lots of pacing before and after.
Slow, steady, gradual.
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.