Friday FEAR

I just realized another interesting “quirk” of human psychology – the fear of what “we” will do if and when “we” start to feel better and have seemingly copious amounts of time that we suddenly have to fill. I don’t know if this is something that happens specifically to those of us who have dealt with chronic illness for long periods of time (or other afflictions that have rendered “you” unable to function “normally”) – it doesn’t seem like it would affect “normal, healthy” people who can get up out of bed in the morning, take a shower and get ready, maybe get the kids ready, go to work, come home and eat dinner and do whatever else is in one’s “daily routine” just because they have a daily routine. When you are ill for years and years and years like I have been and you have had to pick and choose what you spend your daily energy on (the “Spoon Theory” again!) and when you don’t know HOW MUCH energy or “spoons” you will have in a day or how many will be taken from you as the day progresses it is difficult to have anything resembling a “daily routine.” For me, my “daily routine” entails waking up and falling back to sleep in the morning until steroid withdrawal drags me out of bed; I can actually get out of bed a little easier these days (it used to take me up to 90 minutes just to physically MOVE out of bed), but I have to go from the bed to my chair where I sit and start taking all my meds for the morning – usually I have a movie or a show running in the background but I am feeling too unwell to remember what I have watched; I do my “dental routine” (that takes anywhere from 10-30 minutes depending on the day and my physical state in many ways) and then go out to take a walk so I CAN MOVE the rest of the day – I usually don’t walk too far and come back just to sit and try to get feeling “well” for the rest of the day. And the rest of the day? Your guess is as good as mine for what I might be able to do. Sometimes I can take a shower, sometimes I can’t. Sometimes I can drive to get some things I need, sometimes I can’t. Sometimes I can read or write and sometimes I can’t see well enough to do so. I could go on and on, but if you are one of the “normal, healthy” people out there, you should be able to get the general idea how years and years of living like this leaves you with a very legitimate “fear” over what happens when YOUR “normal” (the “sick” normal) starts to fade out and become a “normal, normal.” It is not that I lack things to do by any means … but it is a deep fear that only reveals itself from time to time, usually when it’s quiet and I am alone, faced with something moderately daunting like unpacking or cleaning. It is an interesting fear because I genuinely enjoy being alone and I genuinely CRAVE “down time” just because most of my “down time” is spent feeling … very physically “down.” It seems like it’s yet another of those “psychological glitches” I talked about in my last post – the tricks our brains play on ourselves when we start to become used to something (regardless of what that something is) just because we are USED TO that something – that is, that it has become the “constant” among the chaos.

I just wanted to write a little bit about this fear because I just had a pang of it when I went into the kitchen to make myself a cup of tea (my throat is currently burning and my right eye is terribly unhappy with me so I’m sure the fear of illness AND flaring do not help matters) and I was greeted with the piles of boxes I have yet to unpack in my kitchen. It’s just that the years and years of “untraining,” if you will, start to make you feel like if there does come a time when you go into remission, you will not know what to do with yourself … and that is a scary feeling. It is just a trick our brains play on themselves because if you are anything like me (that is, if you also have severe chronic illness that has dragged on for years and years and years and kept you out of “normalcy”), you have a very long list of things you want to do and want to do NOW as well as a long list of things you wish you had already accomplished. It is not that we lack THINGS TO DO with the time that would open up if we were suddenly “well;” I think it is the fear that we won’t know how to USE that time and know HOW to get back into something like a “routine.” I guess it would be like someone who hasn’t even read a book for 15 years suddenly having to go to school full-time – it’s something that has just become so foreign and abnormal that just the prospect of that “something” throws us into something like a “fight or flight” state of fear.

As always, I would really love to hear from others who have experienced this kind of thing. Whether you have a chronic illness or illnesses or disabilities and this happens to you or if you are a “normal, healthy” person to whom this occurs, I would really love to hear about it. I hope you are all (still!) having a happy and healthy day and I hope you all have an A+ excellent weekend as well!

❤ Always, Beth