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Living with chronic illness and disability is a lot like being stuck in quarantine, only it is far more lonely. At least other people understand why you are distanced, and taking certain precautions. They might not agree with you, but they know why you are doing it.
When you live with a chronic illness, you still live near those in the normal world, but apart from them as well. They don’t really see you. Not the real you. Never the real you.
I must wear a mask of sorts every time I leave the safety of my bedroom. You can’t always see it, but it’s there. The many masks we wear protect others from us as much as protecting ourselves from outside dangers.
The rest of the world has only been looking at exposure to strangers with suspicion for a year, I’ve been doing so for so long that I’ve forgotten what it’s like to simply socialize. Your social skills don’t just get rusty after so many years, as much as dissappear entirely.
Normal people wake up, and make plans to fill every hour of their days, so much so that they are rarely alone.
I wake up every day and just pray. Pray that today will be a good day, and not a bad. Pray that nothing will set off the vomiting. Pray that I’ll have a few hours of productivity before getting knocked on my ass again. Pray that I’ll be lucky enough to get a bath, get dressed, brush my hair, and maybe even fit cooking a meal in.
I pray every night too. I pray that the pain will ease enough to let me sleep. I pray that there won’t be more nightmares tonight. I pray that I don’t sleep erong and get another migraine in the middle of the night.
I pray that tomorrow will be a better day. Always, and without fail, that tomorrow will be a better day.
My life has been distinctly divided good days and bad for more than 15 years now. On good days, I might actually have the energy to leave the house, maybe even visit with a friend for a few hours. But even on good days, a few hours of just visiting drains me. On bad days I just hope nobody will call or stop by, or require more from me than I have to offer at that moment.
And so I isolate out of necessity, while the world goes on all around me. Others go about their normal lives, doing normal people things, while I must plan even the smallest outing with great care.
My condition is very much triggered by stress. My pain levels, migraines, and vomiting are directly linked to the amount of drama in my life at any given moment. A single argument can leave me bedridden and miserable for weeks. Thus I’ve learned to pick my battles very carefully, if not to avoid them totally.
Very rarely is anything worth the suffering that follows.
If you knew that interacting with a certain person or group caused you to have flu like symptoms, you’d learn pretty quickly to limit your exposure to those people too. I’m not contagious, but other people can be. Their problems can too easily become a miserable time for me.
Yes, quarantine is lonely. Especially when those around you are going to clubs, and concerts and socializing all over the place. When all you really want is to be able to spend some time with loved ones without the threat of getting sick.
It’s hard watching other people live their lives from the safety of your bubble. But that bubble protects you from so much worse.
It’s the isolation that’s the hardest, but it’s necessary. Even from those you love most. Your illness has already taken so much from so many.
If you can find just one person who gets it, just one person who cares enough to stick around through the good days and bad, you are truly blessed.
And despite everything, I count my blessings every day. Thankful for even the smallest ray of light at the end of this never ending tunnel.
So, thank you, whoever you may be. For being one of the many blessings in my life. You are the reason I fight.