There are a lot of difficult things with getting used to a condition that causes regular pain or chronic fatigue. Part of it is just getting used to the idea that there is no quick fix, that this is the New Normal in our lives.
Part of it is realising that medication and treatments will alleviate some of the pain, but that they don’t always eliminate it. Even if we’re not feeling horribly crappy, that doesn’t mean we can just blaze through the day like we used to. The reductions in overall capacity from tiring and/or painful conditions create additional problems that are not always easy to anticipate.
There are the social issues, of not wanting to sound whiney, but also of needing to advocate for ourselves, and either forgo doing some things or request accommodations for others. Meanwhile, everyone else is still working on the idea that relieving pain means making-it-go-away, and that “if you’re not in pain, then you can do everything just like normal”.
There are weighing issues of prioritising things. When we don’t fully adjust to this new normal, it can be partly denial, and partly not realising just how much the condition permeates things in life. It’s one thing to say, “I’m hurting, I’m not going to do this right now,” or “Doing that causes me too much wear and tear so I’m going to do this instead.”
But it’s quite another to realise that we can’t keep putting things off until “I have more energy” or “I have more time” or “When I’m feeling better in the afternoon”. In reality even though there are better times of day or just better days, and even though we find alternative means, what we find is that we still can’t do all those things.
We can do them, but we can only do some of them. When we’re having a good afternoon or a better day, we then find that we have a backlog of Things To Do. In truth, there was no way we could really could do all of them previously in our lives, which is why everyone has those long To do Lists in the first place!
There are budgeting issues of allotting energy. In the new normal, we not only can do less because we have fewer good time periods, but also because we have to pace ourselves. If we push ourselves too hard, then we crash and feel worse than we would have otherwise, and will just get even behinder. (And both the crashing and the getting behinder result in being grumpier, making us and everyone around us miserable.)
What makes pain such a bastard is not just the direct issue of hurting — a lot and frequently, or variably and all the time — but also the secondary issues of pain causes stress and stress aggravates pain and the dreadful feedback loops.
Chronic stress-pain loops can result in not having much appetite (so not eating regularly or nutritious foods), being more sensitive to the ordinary incidental pains in life as well as the chronic issues, getting more easily stuck in anxious, obsessive or depressive states, having depressed immune responses, and of course, it can create the whole horrible pain-bad sleep feedback loop. There’s nothing like chronic pain to make one realise just how inter-related psyche and soma really are.
Chronic issues mean not having much in the way of energy reserves. It can be really easy to fall into a bad habit of “cheating” the budgeting or pacing by relying upon crisis energy. Lots of people (especially those with AD/HD) rely upon the “salvation by deadline” to get them energised to do or complete a task. But this kind of crisis energy is really hard on the body because it relies upon the adrenaline from the sense of crisis. Once that adrenaline rush is past, we crash. It’s a way of pushing ourselves that is counter-productive in the long run.
People who are able to integrate the new normal successfully throughout their lives are those who do best with chronic issues. The novelty fades and the issue is simply another part of their life. Acceptance is not the same thing as giving up. We can accept that we have problems without abandoning efforts to find new ways of improving things.
Prioritising and budgeting energy are important components of the adjustment, just are various therapeutic approaches and regular stress management. Energy prioritising and budgeting are especially important because they are less about what we cannot do, and are more about enabling ourselves to do things that are important.
Whatever “important” gets re-defined as.
“But pain… seems to me an insufficient reason not to embrace life. Being dead is quite painless. Pain, like time, is going to come on regardless. Question is, what glorious moments can you win from life in addition to the pain?”
~Lois McMaster Bujold