We live in a sleep deprived culture, and most of us do not get enough rest. However, in terms of healing, recovery, managing problems, dealing with the impact of stress on the body and supporting mental health, sleep and rest are essential. People who are ill or in distress tend to need more time to sleep and rest.
Where this gets complicated is if you are dealing with a long term chronic condition. How much rest is a good idea if healing and recovery aren’t going to happen? How much time do you devote to this kind of self care when it’s going to be an everyday issue, and how much do you push through? If you want some kind of life, to be able to work, maintain relationships and take care of your home then you can’t rest all the time, even if your body wants to.
If you rest all the time, you lose muscle tone. Your body becomes weaker and your stamina deteriorates. Most chronic conditions will wear you out and exhaust you, but if you don’t put up a fight to maintain what body strength and stamina you can, you have less to start with each day. People who are largely well will tell you not to exercise when already in pain, but if you are always in pain and it doesn’t go away, when do you exercise? How do you maintain heart health? How much do you push and when do you rest?
There are probably no experts to consult. It’s possible they exist, but they need to be experts in both your specific condition, and in fitness and wellbeing. Most people working professionally in health and wellness are likely to know less than you do about what might work for your body. They may also think they know more than you do. I have, for example, had to explain to several yoga teachers why yoga is a very bad idea for hypermobile people. My Tai Chi teacher had not knowingly taught a hypermobile person before and while he was brilliant and supportive, it was a process figuring out what to do with me, and he was not initially able to advise me. Equally, I’ve had health professionals tell me to get more exercise for my mental health with no scope for even having a conversation about how to handle body pain around that.
There are no easy answers here. I’ve written this not to offer answers, but to flag up the shape of the issues. For the person struggling with their body and often surrounded by contradictory and unhelpful advice it can be difficult to trust that you may be the most capable expert where your body is concerned. It may also be an awful discovery, but the odds are there is no one better informed about your body and energy levels and how to manage it than you are. Any advice you get may be valuable, but needs understanding on those terms.
For people who do not live with ongoing pain and fatigue, the issue is of recognising what you might not know. People who are largely well don’t always respond well to invisible illness in others. What you think a person can do and what they can do are not the same things. What a person could do one day isn’t a reliable measure of what they can always do. It takes time and patience to truly support someone with ongoing pain and fatigue issues. Don’t be the person who makes that stuff harder by insisting that you know better, when you might not.
Also don’t be the person who tells someone they must rest and heal and cannot do the things until they are properly well. Some of us will never be properly well, and the decision as to what it is worth hurting for, should be a personal one, and not for anyone else to dictate.