Chronic Fatigue Syndrome is life changing, there’s no doubt about that. Some of us had gradual onsets, and others, like myself had sudden onsets. I don’t know which onset is better or worse, all I know is that regardless of your onset, you’re left on this journey you never asked for and just like life itself, you evolve as you go. There seems to be stages people go through, health wise, but also in processing their new life. If I’m to be honest, the journey is often unsettling, and it definitely shapes you into a new person. Your humor grows a little darker, your perceptions of reality begin to twist and tilt. Things don’t look the same, they don’t feel the same, and in time you realize the thing you were so desperately trying to avoid, you know … becoming your illness, you’ve had to a little bit, to survive.
This blog was primarily created to reach out to anyone going through the chronic illness journey so they wouldn’t feel alone, and this post is just another post reaching out to you letting you know, even though you’ve been a on this path a while, you still aren’t alone.
- You no longer go to the ER, unless another doctor makes you or you literally can’t get something under control, like your heartrate or temperature. Why? There are many reasons why, but just to name a few: you know the exertion will make you worse for even longer, you know they’ll simply tell you your labs are fine (even when they aren’t…personal experience) and send you on your way, and let’s face it, ERs are full of sick people and you don’t need any more illnesses to fight off. Having said that I can’t tell you how many times I’ve made sure my PJs are ones I would wear to the ER as I’ve gone to bed literally unsure of how the night would turn out.
- You’ve cried at the doctor, and this crying as been marked as depression. The truth is the tears are a lovely combination of a myriad of things, including frustration, grief, and wishing the doctor in front of you could simply do their doctor thing and cure you. You might feel thankful when the doctor says something like, “Of course you are depressed, who wouldn’t be in this situation?” Because even though you know your tears falling aren’t because you are depressed, you’re still thankful they see there’s a situation and you aren’t malingering.
- You’ve, for the most part, made peace with the fact that all calendared plans are TBD until about an hour before the plans. You’ve rescheduled more plans, including doctor’s appointments, than you can count, and you no longer feel guilty about it, it just is what it is. Your true friends totally get it, and let’s face it, all of the others have fallen away, and your doctor’s offices get it too. I recently forced myself to go the dentist during a wretched flare and THEY sent ME home. Did I mention how important self-care is? Obviously, a steep learning curve on that one for me.
- You’ve pushed yourself well past where you should have energy wise, and you knew you were doing it at the time, but you did it anyway. Some days it’s frustration, some days it’s stubbornness, and sometimes it’s knowing this memory to be made will never come around again so you gather all you have, which is usually just adrenaline coursing through you, and you push, and you don’t stop because you know when you do you won’t rise again for hours, days, weeks, or maybe every months. But that memory you made, you get to keep that forever. Side note here: You can’t just keep pushing every day, if you could, we would times a thousand.
- You’ve been belittled by more doctors than you can count and going to the doctor now causes you anxiety because of your past mistreatment. This is one of the more heartbreaking parts. Before each doctor’s appointment you desperately hope that this person will be compassionate, will listen, will believe you, will hear your words, will actually want to know what you have to say, to add, to share. But often what you’ve come across are know-it-all doctors, who are judgmental and rude. Don’t get me wrong, I’ve had some awesome health care professionals along the way, but I’ve also experienced some real jerks. I try to remind myself that doctors are people too and statistically there is going to be an occasional rude person. If you are a health care professional and you have stumbled across this blog, please remember your oath ‘first do no harm’.
- You’ve kind of given up. You read that right. You’ve tried every supplement you thought could help, you’ve tried explaining every symptom to numerous doctors, you’ve tried to get healthier by ‘thinking positive’, you’ve tried yoga, you’ve tried meditation, you’ve tried sifting through past traumas because you were told that’s why you’re sick, you’ve tried kale, and you’re done now. I remember in the beginning of my illness I would come across these people, who were just done, and I would think, don’t they have hope left? And now, now I get it, but before anyone silently eye rolls me and clicks away please know, I still believe yes doing some of those things helps maintain your best self, and yes, yes, yes keep doing them!! I just haven’t found any one of them to be curative into a state of remission, or anywhere even close to that so I’ve given up on, for instance kale being the answer. For the record I hate kale, but I’ve eaten enough spinach, celery, and broccoli to cure a village of anemia. 😉
- Your greatest strength is ironically exerting no energy at all. So many of you with MECFS were ‘doers’. Before your illness you were very driven, very active, and very headstrong. You’ve had to learn to reprogram yourself to say no to helping people, to doing things, to working, to so, so many things. The word strength no longer has a physical meaning, your strength is now mental, and it’s meant learning to say no when all you really want to say is yes, that you’d love to help with the housework or go for a walk. Instead, in order to survive a lot of your strength has become about self-compassion, about simply allowing your body reprieve and to heal in quiet stillness.
- You know research is ongoing and you’re thankful, but you also know without proper funding and attention, this could be as good as it gets, but you always keep that sliver of hope alive. You’ve read the studies, you know all of the prominent researchers by name and also where the studies are being held. You’ve joined studies yourself in order to help find answers. You’ve watched and waited, and waited, and waited. You’ve been waiting so long you’ve seen studies repeat and find similar results, but then nothing happens. You’ve seen answers, you’ve seen results, but then again…nothing happens. You’ve decided instead of living your life in limbo you are simply going to go about the business of living your best life and keep a keen eye on the latest research, just in case. Because there’s this flicker of hope, like a candle in the night, and it reminds you, they will figure it out, they will, and when they do, watch out world because there’ll be millions of people who’ve been missing from their lives, ready to breath it in as if it were the sweetest, most beautiful scent they ever did smell.
Thank you for stopping by today folks. A few more of my February teddy bears. Almost ready to wrap them up. It’s been mostly fun painting bears everyday, but sometimes felt more like a chore, so I’ll be glad to get back to paint-whatever-you want March as I continue to follow along with World Watercolor Group on Instagram. 😊 Hoping today is especially kind to you.