Once more, I am participating in A Chronic Voice’s monthly linkup.
words: budget, escaping, speeding, slowing, evaluating
This month’s prompts had me thinking about energy. Emotional energy, physical energy, mental energy – all of these energies are limited.
So many of our personal day-to-day decisions are heavily influenced by how much energy we have, how much energy we need, and the energy levels of those around us.
These are my thoughts about what we, those who develop or are hit by disabilities later in life, those of us with a BEFORE and AFTER, need to do to be our best selves!
Using our energy!
People without chronic conditions don’t think about this too much – there’s a bit of concern about “burning your candle at both ends” and other forms of personal exhaustion or overwhelm.
Generally speaking people without disabling conditions have a pretty good sense of what they can and can’t handle and what their personal energy budget is.
They occasionally may overdraw, but usually, that seems to be followed by a short recovery period(sleeping in for a day or two), after which they pick up again as usual – no harm done!
For those of us managing chronic conditions though, it’s just not that easy.
We tend to have two different images of ourselves.
The first one is what we could do, before. Before the accident, before the illness, before the symptoms crept insidiously into our lives.
The old us, the original us. The healthy us.
In opposition to this is an unknown, less measurable identity – who we are now.
We tend to cling to the old identity – the before.
We want to be who we were before. At least, we want the strength, stamina and physical abilities of the before identity.
The problem is, what we are now is this unknown, unexplored “now”, and the before identity is dead.
Grieving our loss
The tendency to use that “before” identity as the measuring point is intense, especially shortly after everything goes wrong.
We don’t want to acknowledge, to accept, that that old identity is gone.
Measuring the new you as compared to the old one hurts.
There is less energy, less freedom, more constraints.
But if we focus on that old identity, we will miss the experiences your new one can provide. We will constantly be struggling with disappointment that we can’t do what we used to.
Usually, that “old me” is gone, never to return.
That identity is dead and needs to be buried.
We need to grieve that loss and say goodbye to that identity, even though it hurts.
The loss deserves respect and expressions of grief, but refusing to bury it, holding onto that former identity as it decays, is only going to putrify and damage our ability to enjoy the now.
Things that die need to be buried.
I had to let that image of the “old me” die. I had to mourn and grieve that loss and bury it in a nice plot so that I could have a life again.
When somebody you loves passes away, you need to let them go.
Remember them fondly, enjoy the memories, but they just can’t help you make new ones.
Yes, you could keep revisiting your old self, escaping into memories or imagining that you haven’t changed. But the fact of the matter is that you’ve changed.
I’ve changed. This is a fact to embrace, even when it hurts. Something to hold onto.
Escaping for brief periods into memory is okay, but it’s not healthy to do that at the expense of who you are now.
It’s not bad for me to remember my childhood and occasionally escape into memories.
The problem is if I use those escapes to avoid my present reality, my present reality isn’t going to be much fun.
The more escape attempts, the less fun reality will be. Bite the bullet and slog through that grief – you will come out much better on the other side.
If my brain is speeding off into the past, how can I enjoy the present?
You can’t change the past. The future is yet to be written.
Only the present can be changed or adjusted – so evaluate your life and how you’re living – and do what you can to live in the present.
You need to let the old you go, escaping from that initial identity.
Shed that skin, leave that identity behind, and get to know your new self.
This new self needs to budget energy and effort. This one does need to make tough decisions about activities to do or places to go.
Comparing the old self to the new one takes energy, which is now in limited supply.
Comparing the fragile new self to the stronger old self hurts that new identity – makes it harder to appreciate and harder to live with.
As with a corpse, that old identity is turning toxic and putrid, souring everything you do and everything you’d consider doing.
You need to focus on your future, and the best thing you can do for yourself is to get rid of that toxic weight.
Planning and budgeting your energy is new, and you don’t know what your personal reserves are, or how quickly they will replenish.
Re-evaluating for a better future
I may not be able to go speeding off after each shiny object I see anymore.
There are so many wonderful and fascinating things out there in the world – so much to learn, so much to know, so much to explore.
My condition is a signal, a command from my body that cannot be ignored.
I need to spend time slowing down, and focusing in on the little things, feel gratitude for what I have, rather than focusing on what I don’t.
The pleasure of a purring cat pushing himself against my hand.
The beauty of the marsh by my home.
Herons and egrets and bluejays and redwing blackbirds flying near me.
The sound of rain pattering on the roof of my porch as I type.
Understanding societal structure and how I can recognize my purpose after I step back a bit and contemplate my life.
Slowing down isn’t a bad thing. Rationing energy isn’t the worst thing in the world.
I do need to readjust my thinking, shift my expectations, but the world is still a beautiful place.
I spend more time evaluating my desires and expectations, so I can more easily focus on the most important things for me.
Evaluating and budgeting aren’t bad things, and neither is slowing down – as long as I can be happy with those actions.
I won’t be part of everything – it really wasn’t possible before, though at times it may have felt like it – but that means I can take my time and choose what actions, information, and groups I value most.
I can wash away the gunk and mire of what others want, keeping up with the joneses, and all that garbage.
I can focus on what I love and who I am.
The old me is dead.
Long live the new me!
Instead of focusing on the loss and the lack, I now have the freedom to focus on what I can do, what options are available to me.
By embracing my new self, my new identity, I can find a way to enjoy my world on my terms.
This was so beautifully written and thought provoking, Alison. Thanks for joining us in the linkup this month! Budgeting out energy is definitely a lifelong practice with chronic illness, even on the good says. And I really liked the metaphor about burying our old selves in order to grow!
Sheryl – thank you so much! I’ve been thinking a lot about energy budgeting, as I have been under extra stress recently(some self-imposed by blogging). I have been extremely affected by death and losses, and have always done my best to honor the memories, but focus on the future. With my partner adjusting to his own disability, I have been thinking a lot about the adjustment process to a ‘new normal’ and the idea of grieving the loss of old self. The imagery felt very right. Recognizing limitations is a painful process, but to create a good future, it’s necessary to recognize and respect the present, rather than dwelling in the past!
A really beautiful and insightful post, thank you for sharing. I really resonated with your insights in terms of budgeting; it’s always a struggle and something we are constantly learning.
Will look more to reading more from you in the future.
Take care
Rhiann xx
Thank you so much for your kind words!
Powerful words. You gave me a lot to think about!!
I also have Functional Neurological Disorder and I didn’t even realise that the author does until I saw her short bio at the end.
I feel so alone on this topic in the sense that I am told it could be worse, that I could have a “permanent, physical” disability like missing limb. The sad thing is that I already feel guilty and say these things to myself anyway. Secondly, just because I’m not displaying some of my more severe symptoms doesn’t mean I’m not battling with other more internal symptoms and/or, exactly as you put it here, having to budget and labour around these things I can and can’t do, or things that are more likely to aggravate. In many ways, I would prefer a missing limb to what I have as I see others living full lives – not to invalidate their difficulties but it simply isn’t as incapacitating.
I grieve the old me
Rosie,
You have every right to grieve the loss of the old you! I also suggest you read my post on internalized ableism, because both the self-talk you mentioned and other pieces of what you are saying definitely suggest that’s a big part of your current struggle. I also have a few more posts on befriending your condition!
We each have our own struggles, and they are valid. Period. Societal ableism makes things much harder than they need to be, and while some(halting, inadequate, and inconsistent) steps have been taken for inclusion of some people with apparent disabilities, even less has been done to be respectful and inclusive of the even larger nonapparent disability community.
Your loss deserves to be grieved. Anyone who tells you otherwise is voicing bias against people with disabilities!