Keeping up with life whilst chronically ill, is obviously a challenge. Even “normal” healthy people find it a challenge to balance their work, chores, family life, exercise, social life, hobbies, rest time, sleep, current affairs and learning new things. Adding in chronic illness, with the constant onslaught of pain and fatigue, makes it impossible to manage everything. Even normally you will find yourself neglecting parts of life because there isn’t enough time or energy in a day, so whether you are chronically ill or not, you might find yourself stuck and unable to manage.
Most people live with the regrets of reducing their time and energy spent on all these important parts of life. Ultimately as with most things as an adult, you need to be realistic, you simply aren’t going to be able to do all the things you normally did, and shouldn’t expect yourself to. Activities like chores are never-ending, and if/when you get better, you can easily catch up with them. So spend 5 minutes cleaning up instead of 30. Many people are perfectionists and hate doing jobs without doing a complete job of it, but you need to change this mentality and accept a sub-par job for the sake of your health. If your finances allow it, buy as many self-help aids you can, to reduce your energy spent on things.
Something that is a main topic in everyone’s life is work, and it’s very hard to balance whilst ill, everyone is in a different situation. Ideally you work on something you enjoy, and if not work as little as possible for as much as possible. Try to combine in exercise, social life and learning new things into your work life, some jobs obviously don’t support this at all, but if it’s possible take advantage of any opportunity. Otherwise make concrete plans to change jobs, rather than just considering it, as hard as it can be, work is a huge part of how you health is affected.
Most advice on managing life is so generalised, like in the previous paragraphs, I write it, but it’s hard to really say anything meaningful, and the meaning can fall flat. One way I start on my own life, is to look at what I can realistically achieve right now, and what I’d be happy with. If that’s going out once a month to meet a support group for socialising, because that’s all the energy I can expend on it, it’s better than never forming a social group, and becoming more and more isolated.
The most insidious part of being ill, is that you strive to be comfortable, illness is very uncomfortable to live with, so you habits change to comfort yourself as much as possible. This doesn’t mean I advocate pushing yourself hard, but you do have to consider making yourself briefly more uncomfortable to make an improvement, and this can be true whether you are ill or not. Slipping into comfort time after time, will ultimately lead you to neglecting more and more of life. It’s a vicious cycle, that ideally you need help with, it’s very difficult to challenge yourself on your own, you just won’t have the energy.
Chronic illness can be difficult for people with the all or nothing attitude, I myself have this attitude and it’s very hard to change the habit, but I know it’s worthwhile to. Even a minute of exercise is worthwhile if I can manage it, as long as I don’t overdo it. Everything builds up over time, and you could be looking at being chronically ill for decades. It’s tempting to put off challenging situations because in the past, those situations led us to even worse symptoms.
Conditions like Chronic Fatigue Syndrome have a clear issue with this. You overdo something like exercise and actually get worse and worse. You might go from mild symptoms to severe based on the advice of challenging yourself, such as GET therapy. I think the ideas of challenging yourself and pushing yourself to make progress, need to be altered. You do need to challenge yourself, but it has to be realistic, it has to have a positive effect. The difficult part of this, is you simply don’t know the effect until you’ve done it.
One mistake I would make, is that for the many days I was severe with my symptoms, I would do nothing, then I would have a day or two, where my symptoms improved, I would then pack in as much as possible into the good days, to make up for all the wasted time on the bad days. This was a mistake, as it often was the impetus to send me back to severe symptoms, and it would take days for my body to react, but it would react this way every time. I think it’s very tempting to want to make up for things, but you can’t. Constant, realistic effort is much more ideal.
Depending on your severity, this can be an issue. No one is asking a person with severe symptoms to challenge themselves, when they can barely manage just existing. Severe symptoms are really a different situation, and you need to recuperate as much as possible, your plans should revolve around whatever gives even a tiny improvement, and not pushing yourself. The challenge there, is really to just survive until the severe symptoms end. Some people obviously aren’t lucky, and severe symptoms never improve. In this situation, you can only hope the medical community comes up with a therapy that’s effective. Severe symptoms don’t warrant you putting effort into improving your life, they only warrant you doing everything you can to survive, and to lessen your suffering as much as possible.
After all, little by little, a little becomes a lot.