You know that feeling you experience when you walk into a room and you can’t even begin to remember why you went there? That’s what it feels like to have brain fog due to chronic illness. On a bad day I leave behind a trail of unfinished tasks, deserting them to wander around my apartment for some reason that I simply can’t remember. I usually find my way back to the things I left uncompleted, looking at them through squinty, tired eyes and a haze of confusion. If not, then my husband will usually find strange evidence of my brain fog and fatigue throughout our home.
Experiencing brain fog (or fibro fog) is just one aspect of my chronic illnesses. There are almost countless other symptoms that have made their way into my life since I was diagnosed with early onset osteoarthritis and fibromyalgia. In this post, I’m going to candidly share some of the unfortunate realities of life with chronic illnesses and chronic pain.
The unfortunate realities of life with chronic illness:
1. Life with chronic illness means that taking care of yourself can be a full time job – one that people don’t always understand because it doesn’t come with a salary or 401(k).
2. It means you occasionally need help to get dressed, even though you’re only 26 years young.
3. It means learning new phrases like “spoon theory” (and then learning how to explain them to others).
4. It means having to instruct your completely “undomesticated” husband on how to do household chores, such as cleaning the stove top and putting away the laundry, because you can’t often finish them.
5. Life with multiple chronic illnesses means that a specialist might refuse you as a patient because you have a certain illness (fibromyalgia) despite the fact that you are asking to see him for a different one (osteoarthritis).
6. It means you can go shopping for groceries and cook a meal, just not on the same day.
7. Living with chronic pain frequently means having painsomnia – i.e., being unable to sleep because you are in too much pain. It also means being in more pain because you didn’t sleep, thus initiating the painsomnia cycle.
8. Life with chronic illness means you are often targeted by people who think they have the supplement, diet, or essential oil treatment that will cure you.
9. It means the pride you feel from having a productive day can be suddenly swept away by waves of pain because, actually, you did too much.
10. You’ll gradually learn that you need to rest before you go to a meeting, because if you wait until after than you’ll need twice as long to recover.
11. Life as a chronically ill person inevitably leads to unexpected, embarrassing situations that leave you at the bottom of an emotional roller coaster.
12. It means you might quit your job (or lose it). Then, since you don’t go to work every day like other people, you may find yourself defending your daily routine to complete strangers.
13. It means selling your guitar because you no longer have the grip and dexterity in your fingers to play it.
14. It means asking your spouse to do way too much for you.
15. It makes you laugh at inspirational sayings that you now find ridiculous, such as “Just do it” or “Pain is weakness leaving the body.”
16. It feels like your chronic illness(es) are trying to rob you of your health, your hobbies, your money (between health care expenses and possible loss of income), and even your mental health at times.
17. It means you have to learn coping methods for something that seems impossible to cope with (especially if you are young).
18. Life with a chronic illness means that you consider moving into an accessible house, because that is a reality of this new life you are living.
19. It means panicking when you go out by yourself, because you don’t know if you can manage the pain on your own.
20. It frequently means experiencing feelings of depression or grief over the way of life that you’ve lost.
21. It can mean being seen as lazy because you can’t handle physical activity.
22. Life as a chronically ill person can make you do things like push your limitations when you travel because you desperately want to make the most out of those rare times when you aren’t lying in bed all day.
23. It means needing two days to recover from an activity that doesn’t bring anyone else pain.
24. It means reading new books, watching new TV shows, and spending far too much time on social media because those are things you can do from the comfort of your couch or bed.
25. It means putting yourself first even when friends and family may misunderstand, react poorly, or become angry with you.
26. Life with chronic illness can mean shutting the door on things you would never have stopped doing if you had been given a choice.
27. It means deciding whether to live with the horrible side effects of your new pain medicine or the horrible pain you have without it. It can also mean going through the worst withdrawal of your life when you decide you can’t handle said horrible side effects anymore.
28. It means having to swap out cute flats for supportive sneakers.
29. It means that you have to be committed to your chronic sex life and find appropriate ways to push past your fatigue and pain.
30. It means bouncing from one support group to another, but it also means you’ll be incredibly grateful to finally find the one that is right for you.
31. It means having to rewrite instructions meant for healthy people for someone with chronic pain.
32. Sadly, it often means that you feel hopeless, inconsolable and lost.
33. But it also means that you’ve reached a new level of resilience. You’ve become a chronic pain warrior who knows what it’s like to experience a chronic pain win. Your illness has taught you how to prioritize the things and people that really matter to you.
Your periodic breakthroughs will make you remember who you are and why you keep fighting.