RE: “Strange Days” or “My Week Without My Meds”
I have a different condition than you, but I get the same response often. I should be grateful that I do not have XXX or that I am not as bad off as some other person. I wonder why people cannot just feel empathy.
I used to take a million pills for what I have and lost "half my size" 8 years ago. When I asked my 3 doctors if I could cut any dosages, the answer was "no" from all of them. So I instead ended all of it over the course of a year - weaning off most of them with doctor's monitoring me.
I thought I would add back what I needed, but ended up to need none of it. I now just take a few painkillers a month on bad days. This was a very unexpected result.
Regarding sinus issues, have you ever tried a neti pot? I used to have terrible sinus headaches constantly and took a ton of drugs for them. Once I started the neti pot, I no longer have the headaches at all. It took about two weeks for all kinds of old crud to come out of me by using it daily. Now I just use it a couple times a week.
My son also has this trouble and the neti pot helps him too. It's worth a try. Those sinus meds really did a number on me and I always had brain fog.
I love my neti pot, that thing is excellent! Thanks for the suggestion, glad to know that I am not alone in my use of it.
And you're so right... Whatever issues we have are unique to us - even if we have the same condition as someone else, it will affect us differently, and that is something that no one considers. When I was in CBT group therapy, there was a woman who was a stroke victim, and she routinely got the "but you look OK" line from everyone. There is a vast difference from "looking OK" and "being OK."
Glad you had success with your meds. I am hoping to not need them one day, and while that does not look likely for me, I always tell myself that at least I can still function.
So true. Whatever it takes to keep going - do it.
I have bad hands from arthritis and a cell phone is a killer for me. Texting and using my thumbs as needed and even holding the heavy thing are things I avoid. I'm grateful a regular keyboard on my laptop is not a problem.
But people tell my OFTEN that if I would just try - I could use a phone. Since I cannot open a water bottle with my hands, etc etc etc - I do not see any need to break them with a phone. But this message gets through maybe 5% of the time. Everyone else wants to figure out how I can use a phone lol. It makes my hands sore just to think about it.
I missed saying before - thank you for being so brave to write about this in the first place. I'm sure it is helpful for you and maybe will open some minds.
It's funny (not "funny haha like a clown", mind you), but the first thing I started thinking of, as an IT guy, is ways for you to communicate so that you wouldn't have to use a phone. People don't understand - it's like, "Well, you lost your leg. Have you tried walking on it anyway? Or maybe growing a new one?"
And yet we persevere. Not just with our limitations, but against the rampant ignorance that only comes from a first- or second-hand understanding of the struggle. Thank you for your praise, and thank you for your comments, as well!
Hahahaha! This is it exactly!!!
So glad to run into you too :)
Me, too!
I have a family member who falls into the Autism Spectrum, and his father was getting a bit impatient with the fact that he was pushing 30 and was still exhibiting some behaviors like a teenager. And the "growing a new leg" analogy was the same one that the mother used to describe to the father how their son was not going to develop in the same areas as others. Fortunately, it opened the father's eyes and his patience grew, and he also acknowledged the areas in which his son excelled. So there is hope for people to learn about those of us who have a few extra obstacles in our paths.
It's always a wonderful development when someone "gets it." I will keep that analogy with me too :)