One of the major keys to managing an energy limiting chronic illness well, is acceptance. Without it, we constantly push beyond our limits and get stuck in a cycle of boom and bust, or even worse, an ever decreasing cycle of worsening symptoms and disability. But acceptance isn’t a one off thing, it’s not something that once you’ve found you’re suddenly sorted, it’s an ongoing challenge, something that has to be looked for over and over again!
Where loss is concerned, acceptance is found at the end of the process of grieving. When we allow ourselves to flow through the process of grief and reach an acceptance of the losses involved in chronic illness, we empower ourselves to take a more pragmatic approach to making the most of our current circumstances. Unfortunately though, grief is never a one off thing with chronic illness.
Chronic illnesses like Fibromyalgia, ME/CFS and Lyme Disease aren’t stable, even with great illness management skills we tend to have many ups and down. And it’s impossible not to have hope when we have our ups. It’s impossible not to imagine being able to do things again, things that we miss. Then when we have our downs we go through that loss again. There’s not only the real time losses of the way life has been better with more energy and fewer symptoms, there’s also the loss of our hope: maybe we won’t ever be able to do those things that we tentatively started imagining might be possible for us again?
There are 3 skills that I have found helpful in flowing through to that acceptance again as quickly and smoothly as possible.
If I can allow myself to feel down and feel compassionate towards myself, understanding that it’s human to hope, it’s normal to feel a sense of loss, it’s not nice to be in a crash/flare again, then I set my feelings free to flow. When feelings flow they change and my grief moves naturally towards acceptance (again!) How would you want to care for someone you love if they were going through what you’re going through now? Aim to have the same compassion, understanding and supportive attitude for yourself!
I’ve taught myself not to make conclusions about my future based on how I’m feeling during my low times. The ‘what if I won’t ever be able to…’ thoughts really aren’t helpful. I tell myself to wait until I’m more stable or am feeling better. I tell myself that my brain isn’t functioning well at the moment and can’t be trusted. I remind myself that nobody knows the future, and that when I’ve got over this dip I’ll be able to influence the future with my self-help, but I won’t know how that’s going to go until I get there! I allow myself to feel the loss of hope, but I’m careful about not adding too much meaning to it. If you allow yourself to think too much when you’re feeling more unwell than usual, those thoughts are unlikely to be positive. Could you give yourself permission not to think about it right now?
Making down time as comfortable as possible
In order not to think too much, I focus on making my down time as comfortable as possible. How can I distract myself as pleasantly as possible within the confines of my limited energy? I also try to remind myself that when my brain chemistry isn’t being messed up by this crash/flare state, I’m pretty good at making life worthwhile. Although it might be nice to do all those things I’d hope I’d get well enough to do, I don’t need them. My original acceptance taught me how to make the most of the here and now. I’ll be able to do that again!
I’ve found that the more I’ve honed these skills, the faster I reach that new acceptance. I know I’ll have to go through it all again sometime, but it doesn’t really matter. That’s life, it has ups and downs, it includes hopes and losses, but I’m confident now that I can deal with them and get through!
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