The thing about chronic illness is that it is the hardest damn thing in your life. Things will stress you out in your life. Major events will cause significant pain, grief, hardship, and pain. But there will be great joys and happiness to compensate for that. Just like everyone else. What is different is this constant, everlasting stressor that you have to endlessly deal with.
Infinite care: Leading to long-term maintenance. Moderation. Never exceeding your limits. Careful planning. Just essentially a life of infinite care. And to be honest less spontaneity. But there is some spontaneity because sometimes you feel moderately good and want to take advantage of that moment, that window of opportunity as it were. Which we cannot do when we plan because generally our illness simply doesn’t like plans.
Medications: More medications. Changing medications. Alternative treatments. Other alternative treatments. And all the side effects that come with these. And sometimes you have to wonder if any of it is doing a damn thing. Sometimes I wonder if I went off of everything that I would feel like and then I remember, oh yeah, worse. But no one enjoys the medications. Quite frankly I have troubles with a lot of the alternative treatments because the research is generally not that great, I don’t get results and often I get more pain.
Complications in the whole life spectrum: Money out of pocket. Lower income. Compromises. Best laid plans of mice and men often go array when it comes to chronic illness. Best not to think about what ifs and often those compromises are to improve our well-being, but doesn’t change the fact there are compromises, often financial inability and money spent out of pocket on treatments.
Symptoms: Symptoms that don’t even make sense. Random weirdness doctors can’t even explain no matter how many tests they do. Until your file is volumes. Comorbid conditions. More comorbid conditions that even seems fair to be honest. Life should really have a limit on that sort of thing. Like maximum 3 health conditions per person. Then the pain. Oh, the pain. Not even mentioning constant fatigue and lack of sleep. Weighs us down.
It is a life of coping really. It is our main focus. Welcome to the storm. Time to seek out your umbrellas. Because the storm doesn’t end. And I think really acceptance is understanding the fact you have to move with this illness and not against it. Understanding you have to improve, not win. Make strides in a positive direction. Whatever way that means to you.
The stress of it has to be managed because it can really get to us. We have to engage in self-care or we really do burn out. For me, if I do not manage this it leads to depression pretty fast. And hopelessness. Like nothing will ever help. Because it feels Massive. And what I have to understand is some self-care goes a long way in helping me cope with the stress of dealing with the everyday pain of it all. Everything I listed above has an impact one way or another.
It is vital we rest when we need to rest. In particular, if we know we are going to engage in an activity we need to prepare for that by having rest before and after, even by having a nap to prepare our reserves. It is important to understand guilt shouldn’t enter the picture because it is fundamental we manage our energy levels and pace ourselves. I cannot stress enough how important pacing is to how we manage our illness and pain. When we push too far, even with general chores or too much work, we tip the scales and increase our pain too far into a flare-up of symptoms and pain. Causing us to have to recover. And then we repeat. If we pace ourselves we can eliminate some of this peaking of pain activity. Not to say it doesn’t happen for other reasons of course. And not to say pacing isn’t damn hard, but we have to get into the routine of it. And when we rest we have to really rest. Engage in some meditation if it helps. Or relaxation breathing. Go someplace quiet and out of the way to just get that space needed. So hard to do and so beneficial. I was told to do this at work and still have not managed it but know it would help manage my pain there. As it does at home.
There are times when this constant, persistent nature of this illness exhausts me to my bones. I find engaging in distracting activities, that I can handle, to be the most comfort and mood-boosting things to do. When my depression was at its worst, those were not even satisfactory. But I realize they are quite necessary for my wellbeing. It was almost like I needed my psychologist to give me permission to do them without guilt though. He was the one that said they were important for mood, for distractions for our self-worth. And for some reason, I felt if I wasn’t doing something productive I ought to feel guilty about that. Because my illness makes me feel so guilty all the time. Why this came to be I don’t know. We are as functional as we can be. We know we have to pace and know the consequences if we don’t. Even know we are in fact more productive if we Do. Yet we feel we need to push through the pain and do more and more, and anything for ourselves is just… not right. Because we didn’t do enough. Not like we Could if we were well, right? Like we don’t have a right to doing things for ourselves. And our own self-care and health. Like we don’t matter.
If we are to make peace with our illness then we do have to matter. Then we have to understand, this is the chronic illness lifestyle and self-care is a part of that. Everything we do to cope is a part of that. Pacing is a part of that. Every little bit counts and is important to our wellbeing and that matters. So acceptance is knowing you matter and taking care of yourself. And I know I should take that advice myself.