It's Okay to Not Be Okay + How to Deal

6:26 PM chronicmigraineellie 0 Comments


Something that not many people tell you when you're dealing with a chronic illness is that it's okay to not be okay. On the outside, we put up this front- that despite how chaotic our lives are medically, we try and make them seem as perfect and put together as possible. However, it is necessary to give yourself the space to not be okay.
Living with a chronic illness is hard. It's not a walk in the park. I know that I try as hard as I can to make it seem like my life doesn't have bumps, or even have ups and downs. However, I also give myself space to not be okay. Most importantly, I cry. I am a proud crier. I cry all the time. And that's because IT'S HEALTHY.
I recently just got some news (which i'll share once I know more information) and have had to deal with my next steps, new doctors, and what this means for my life. It's so easy to get carried away and lose sight of yourself and your goals in life because of different diagnoses. As patients, we are often only given the bare minimum of information so that we have to look up more information ourselves. Well, we all know how that goes. Googling your symptoms should always be taken with a grain of salt. ALWAYS. That is non-negotiable. Furthermore, if you're a special medical snowflake like myself, you will not always find relevant and helpful information about your condition. You may just end up freaking yourself out and frantically calling your doctors- which is not fun for anyone. Furthermore, it'll just add even more stress onto your already rising stress levels.
The way to use this type of exploratory Google research is to create questions for your doctor for your next visit, so you can be informed and then bring these ideas up to your doctor(s). Try and write down a list of concerns, medicine questions and general informational questions about your condition so that when you do see your doctor, you're not totally frazzled and unable to ask questions.
Getting to the point where you can think rationally about your condition can be hard too. I know that sometimes I forget that what's going on is actually happening to me, and not someone else. I have to take a step back and pull myself back together. Sometimes it takes dissociating from my illness to think about my medical problems so that I don't think about the pain and trauma that I go through daily and can logically and realistically think through my life, my medications and what I need to do to get the best care for myself.
Whenever I tell people about my medical problems, they always ask me if I know what's wrong, why I became sick and if there's a way to fix it. Looking into someone's eyes and saying "No, they have no idea what's wrong with me, there's no cure for migraines and I may grow out of them but we're not sure" is heartbreaking for me because it brings back all of the emotions that I work so hard to keep down about how helpless that I feel. I always feel like I have to justify my answer by saying "but I'm doing better and I'm more stable than I have been" and other phrases like that almost to placate the sadness and remind myself that things seem to be looking up. We all do what we need to to keep going. Personally, I look forward. I set flexible goals. I do everything I can to make myself feel the most empowered and in control that I can. I also give myself the time and space to break down. Because this is hard. No one should ever feel like they're carrying the burden of their illness alone. Reach out to someone, talk to a friend about how you feel and set short term goals for yourself, no matter how small you may think they are. Sometimes, just getting out of bed and showering are totally valid goals. Know that you need to give yourself the time and space to recover, and by doing that you are already helping yourself. A healthy mind is one that is both realistic and optimistic. As a spoonie, you need to have both so you can take care of yourself, mentally and physically.

As Chronic Migraine and Daily Headache month is coming to an end, I hope you all learned something from the posts that I did every day on social media. If you haven't looked yet, go to my Instagram, Twitter and Facebook pages to catch up on the informative posts. Feel free to share any of the pictures to raise awareness. Even though June may be coming to an end soon, my fight to raise awareness about Chronic Migraines and Invisible Illnesses continues. As always, have a lovely, migraine-free week.

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