I find flare-ups and setbacks very frustrating, and emotionally difficult. I’d be surprised if that isn’t normal for people with chronic illness. All the worst emotions tend to surface. And it’s even harder than usual to fend off self-doubt and self -criticism because I’m tired and sore and cross. There are two phrases that have come to mind often over the last few weeks. These phrases are helping me to remember that I am doing the best I can. I am normal. And I shouldn’t set ridiculous expectations for myself.
“If you’re feeling it, you’re doing it”
This is something Magdalena, my yoga teacher, often says during class. It’s a reminder to ignore what anyone else in the room might be doing. She also wants us to forget about striving to reach any particular goal. It’s a reminder that it doesn’t matter if you can stretch your hand down to your thigh, your shin, or all the way to the floor. Or in my case, it doesn’t matter if you’re lying on the floor doing something completely different. If you can feel the muscles engaging then you are doing the pose at exactly the right level for you at that moment. That’s all that’s important.
I’ve found myself repeating “if you’re feeling it you’re doing it” to myself many times over the last few weeks outside of the yoga class. The phrase can help every time I’m telling myself that I ‘should’ be able to do more than I am. A gentle stretch of my abilities is far better than going too far. Feeling contentment and accomplishment is far better than feeling like I’m failing. I don’t need to compete with anyone else. I don’t need to compete with what I was doing a month ago. I certainly don’t want to be competing with imaginary flawless versions of myself that I create in my mind. That self-criticism and guilt don’t serve any useful purpose. If I’m feeling it I’m doing it.
“Simply have a day”
I know you’re sad, so I won’t tell you to have a good day. Instead, I advise you to simply have a day. Stay alive, feed yourself well, wear comfortable clothes, and don’t give up on yourself just yet. It’ll get better. Until then, have a day.”Anon
I was introduced to this anonymous quote by a fellow Habitician and blogger. I like it because it is understanding and forgiving. And I feel less alone. Because when I read these words I know what I am going through is a normal part of human experience. I can see that many people have found this quote helpful. Lots of people need comforting when life is hard. Lots of people struggle with daily life.
I like that there’s no exhortation to be positive. Putting on a brave face can make me feel more isolated. Instead, there’s lots of understanding of just how hard some days can be. There’s nothing wrong with having hope or optimism. But it should be grounded in optimistic realism. I believe this is very important if I am going to have any hope of living with some sort of acceptance and contentment despite my condition. I love that this phrase supports that view. It is optimistic reminding us that things will get better. But makes no promises about how long it will take and doesn’t for a second suggest it will be easy or simple to get there. “Just have a day” takes the pressure off.
The emotional distress of a flare-up
I am very self-critical and judgemental towards myself. I believe that other people would cope with my condition better than I can. I imagine an alternate version of myself who somehow copes with chronic illness, managing all the symptoms, lifestyle changes and therapy while maintaining their life more or less as it was. This is a fantasy. But I still feel like I’m letting others down and letting myself down by not being able to do as much I feel I should be able to. I push these issues to one side when I am doing a lot of activities. I think that being active and seeing improvements gives me regular evidence that I’m working hard at managing my conditions and living my life as best as I can and this undermines the critical voice. But during a relapse or flare-up that voice gets louder and I’m much more inclined to listen to it. I am susceptible to believe that if I had worked harder at recovery or managing my illness maybe I could have avoided the setback. I guess deep down I’m worried my illness is my fault.
None of that is true of course. I don’t have these suspicions about other people living with chronic illness. I know it’s a constant balancing act. That having a chronic condition means you have something that may never go away despite your best efforts and those of your doctors. And that this is no one’s fault. It’s the nature of having a chronic condition. Flare-ups too are an inevitable part of chronic illness. Many things lie outside our control and outside our awareness (this stays true no matter how many mindfulness courses you have taken). External factors are always at play. And our bodies are hugely complex living organisms. Much of what goes on inside us is outside our conscious control. So we should be realistic. Set goals, yes but make sure they are rewarding and achievable right now.
Living with a chronic illness means living with ups and downs, improvements and setbacks sometimes for a very long time. Even when long-term recovery is a realistic prospect it isn’t a linear process. “If you’re feeling it, you’re doing it” has been a nice little phrase to help me keep that in mind and to recognise what I am accomplishing. I’m using the phrase to encourage myself to set aside what I could do before and to forget about what I want to be able to do in the future. Instead, if I’m doing something to the best of my ability right now, whatever that is then I’m succeeding – I’m doing it! And when a ‘normal’ day is impossible just deal with the basics – just have a day. And keep faith that it will improve in time.
These phrases don’t change anything on a practical level. It’s still hard. But keeping them in mind is reminding of how I want to deal with my illness – with acceptance and compassion.