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Adjusting My Dreams for Life With Chronic Illness

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When does the grieving end?

The answer is, it doesn’t.

It changes. Sometimes it’s better, sometimes it’s worse. It’s just the way it is.

It is, however, so easy to get completely caught up in the losses we face every single day because of chronic illness. The main being the loss of self. The loss of the person we were before, and also the loss of a lot of the dreams we had.

I do enjoy living in the land of denial sometimes, and while I know I will have better days, I do tend to keep dreams and plans alive in my head (or the odd time in reality) that I have to accept are just not options any longer for me.

It’s very hard for my 31-year-old brain and body to accept this most of the time and to me, it feels like defeat, like I’m giving up, by starting to accept my limitations and change my plans. But the reality of it is, I have no choice. Living in a world of “I used to be able to, or someday I’ll be able to” isn’t healthy nor is it productive. I thought keeping some of my dreams alive was a healthy coping mechanism for me, but as my boyfriend recently pointed out, it’s not. It’s just feeding the cycle of me grieving over things I can no longer do in reality and helping me stay in denial about my limitations and new reality.

So here it is. I can’t run a big farm anymore and milk a dozen goats. Having no immune system means I can’t control my allergies, my susceptibility to infections, my extreme fatigue levels and the completely random and blinding bouts of flares that leave me unable to function for weeks or months at a time. I won’t be climbing Mount Kilimanjaro. I just won’t. First of all, most of my money goes to medical bills and I’ll never be able to hold a regular job because of my illnesses. But secondly, I’ll never be able to physically do it. I’m on dozens of medications, my heart has weakened, I’m lucky a lot of the time I can still walk. I need injections and infusions to keep me alive and out of the hospital. I’m not going to be able to get those at basecamp or carry them in my pack.

I can’t tend my once half-acre garden either. I cannot tolerate the sun without flaring, or the heavy work. Of course I can still garden on a smaller scale, but feeding a small village is a thing of the past.

Even all my dreams of travel – not a write-off, but a much bigger challenge and way more things need to be taken into consideration, and not just medications. It’s the fatigue: how much can I do in one day? What if I flare? What if I’m in another country and need emergency medical care? There are so many things to worry about. Just going to the city for an afternoon or shopping at the mall with my niece needs to be planned: Will I have the energy to drive us there and home without crashing? Will it set me back? Am I well enough right now? Are my side effects from my current meds manageable?

It’s very easy to want to curl up in a corner and do nothing but cry. And sometimes, that’s all we can do. And it’s allowed. We just have to remember not to stay there too long. Let it out, but then focus not on the losses, but the things you can still do, and the new dreams you can create. We have to remember, even though it’s one of the biggest challenges we have: all is not lost.

For me, I can still be creative, I can still make art, I can still write. I can still manage my small dogs and house pets, short hikes when I’m well enough. I have a man in my life who loves and supports me, despite how difficult this is for him, and the burden it puts on his shoulders as well… a burden he could have chosen to not carry.

woman's backyard with art and coffee on the railing of her deck

We have to try and remember to not drown… to not let our boats sink… and sometimes adjusting your sails and taking a different course isn’t so bad. Sometimes it leads us to a destination we may have never dreamt of heading for before.

So be open to new possibilities. They may not be the things you used to do, or the things you had planned… they might just need adjustments made, they might be totally brand new things… but sometimes it’s easier to play with the cards you have been dealt rather than just grieving over the one we have.

It doesn’t make a single one of our challenges any easier.

But it keeps us moving forward, and reminds us we still can…

Which keeps us fighting, and not giving up.

Originally published: November 7, 2017
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