Chronic Illness – The pain of not knowing
I’m an optimistic person by nature, my glass is half full, I look for the positives, every cloud has a silver lining and all those other clichés; but sometimes I think one of the hardest parts of a condition which is remitting and relapsing is the not knowing if and when you’re going to improve, stay the same or get worse. I feel like I’m living my life waiting to improve and while I am still living, making the most of the energy I have, I am putting off a lot of things, waiting until I’m better, or at least a bit better. If on the other hand I knew this was it, that this was as well as I will ever ge then I’d stop waiting and start doing the things I really want to, like travel, go in a hot air balloon and various other things on my bucket list.
When you have an illness like ME/CFS, you have to weigh every action: can I do this, how will it affect my health, will I suffer in the short or long-term? Is it worth the risk? If I do this activity, watch this film, see this friend, go out for this meal, will I be okay, will I be pushing myself too much and how much resting will I need to do before and after? It’s a constant balancing act to keep the scales of energy even and level. I wouldn’t mind this so much if you saw a marked improvement in your overall health; but personally I’ve found I can pace myself and maintain my ability level, I just don’t seem to be able to make significant improvements.
Don’t get me wrong I’m doing so much better than when I was bed bound, life is unrecognisable and I’m very grateful for that. I’m also aware that there are lots of people much worse than I am; but there are also many people who are better than me and millions who aren’t ill at all. The majority of people take good health for granted, so at times it’s hard to be grateful for abilities which if others had to live with, they would find almost unbearable.
I know I could have something much worse, that there are people who would do anything to swap conditions with me. I just find the concept of being grateful for not being as ill as someone else rather odd and difficult at times, when all I want is to be well or to be given some kind of schedule, a timeline…. you’ll be at this ability level for so many days/weeks/months/years, then you’ll go up/down to this level and that will last for…. Or just to know this is it, this is the best I can hope for and I can then decide which dreams to follow now and which ones to let go. I know that wouldn’t suit everyone; but for me I’d find it much easier to live with.
When you have an illness like ME/CFS, you have to weigh every action: can I do this, how will it affect my health, will I suffer in the short or long-term? Is it worth the risk? If I do this activity, watch this film, see this friend, go out for this meal, will I be okay, will I be pushing myself too much and how much resting will I need to do before and after? It’s a constant balancing act to keep the scales of energy even and level. I wouldn’t mind this so much if you saw a marked improvement in your overall health; but personally I’ve found I can pace myself and maintain my ability level, I just don’t seem to be able to make significant improvements.
Don’t get me wrong I’m doing so much better than when I was bed bound, life is unrecognisable and I’m very grateful for that. I’m also aware that there are lots of people much worse than I am; but there are also many people who are better than me and millions who aren’t ill at all. The majority of people take good health for granted, so at times it’s hard to be grateful for abilities which if others had to live with, they would find almost unbearable.
I know I could have something much worse, that there are people who would do anything to swap conditions with me. I just find the concept of being grateful for not being as ill as someone else rather odd and difficult at times, when all I want is to be well or to be given some kind of schedule, a timeline…. you’ll be at this ability level for so many days/weeks/months/years, then you’ll go up/down to this level and that will last for…. Or just to know this is it, this is the best I can hope for and I can then decide which dreams to follow now and which ones to let go. I know that wouldn’t suit everyone; but for me I’d find it much easier to live with.
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.