I am a work from home mom of two, who was diagnosed with fibromyalgia and myofascial pain disorder, among other things, within the last year. This came after a year of very active research and searching, and many years of unexplainables.
This really affects my life in general but especially my work life. Most often my work is the first thing that gets cut when I’m having a bad day, or just increased symptoms. I just can’t not care for my children, and I’m already at home so work is just the easiest thing to cut! And maybe that’s not good for me but it’s what I’m able to control, and for now it’s how I’m able to handle things.
There are so, so, so many symptoms and comorbidities (issues that occur along side these disorders) meaning that everyday is different, and often times flares are different. And since these are chronic disorders that are lifelong, I will never fully get relief. But let me tell ya, it is so hard to work sometimes, even with good medication, lifestyle changes, and good help. It is so frustrating to have my work day planned out, everything ready to go, get ready and then a flare come on, or not know there is a big weather change coming at then of the day or during the night, and then a flare comes on before you can prepare accordingly.
Another thing I never realized is how many doctor’s appointments I have and will continue to have for the rest of my life. I have to make those top priority. And if work gets scrapped for the day because I had to spend all my available time traveling to or waiting at an appointment, then so be it. It’s something that frustrates me to no end. I know they can’t help it but when I just happen to get put on a busy day for my doctor, I can give up any hope of work for the day.
Chronic fatigue is another huge issue for me. Even without being in a flare or having a bad day, I am just always tired. I never ever feel rested. I always need a nap. It’s more than just being a little sleepy. It’s being so tired my brain doesn’t work, being so tired i literally cannot move, being so tired I can’t eat sometimes. Like this is an indescribable, exhausted that there is just no relief for. This is a tough one for me. I can want to do and plan to do so many things for the day, but I physically cannot make my body do them. I can be laying in the recliner barely able to keep eyes on my kids until their father comes home from work, and internally be berating myself for all the things I was supposed to be doing.
I’m still very new to my diagnosis-es and am still very much learning. I am also learning to forgive myself for the things I am unable to control. I would never ever think of another person as strictly, and as harshly as I do myself. I don’t know why I do it to myself. I guess I’m just stuck in a way of thinking how I did when I was young and relatively symptom free. So if you are in my shoes or similar, I salute you. We are in this together! And we will figure this out!
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