FASD Up & Down Days

Last night I logged into my personal Twitter account after forgetting about it for a while. One of the first things popped up was a tweet by FASDhub Scotland about FASD and having Up and Down days. I remembered how that resonated with me when I had originally retweeted it and decided that I wanted to write about what that is like from my own personal experiences.

Everybody has up and down days. Let’s be honest. It seems though that individuals like me with FASD have a lot of up and down days though. It can be extremely difficult and frustrating not only for us but for those in our lives. I think that it is a good idea to try to put this into perspective though so others might understand a little bit better of what this means.

A prime example of this would be the differences between yesterday and today for me. Yesterday I woke up earlier than usual. Because I had wanted to launch this platform as soon as possible I began compiling everything I needed to get it going. I was laser focused (thanks FASD and ADHD) and spent hours upon hours setting everything up. It was an UP day. It was a get everything accomplished day. My strengths really shone through. I managed to get this platform launched in one day.

Now, someone who doesn’t know I have FASD would probably look at me and think to themselves that I can get a lot done just like an average person. They wouldn’t even have the slightest inclination that I struggle with issues. This can also be frustrating to those around me because they see me accomplishing so much and question if I really have a disability or if I’m just faking it. Yet the stark contrast and reality is that I do. It’s just not always visible or in control essentially.

There are times that I have spent a few days in a row accomplishing a lot. Even with my own woodworking business there have been times I have gone several days in a row creating things, organizing events, and getting my shop in order. These are the kind of days that demonstrate what I am truly capable of. This same way applies to my education. Yet, there is always a down period lurking right around the corner that I never have any warning is coming.

Like a fiery car crash it hits me out of nowhere. I go to sleep (when I can, thanks primary insomnia) and when I wake up… well let’s just say, when do I really wake up. These down days affect everything about me. It’s hard to move, it’s hard to think, it’s hard to even speak sometimes. There are days when I just sleep and sleep and by the time I wake up, it’s late afternoon. My body is almost like it needs to be reset.

These down days are quite frequent but unless you interact with me daily, you’ll probably not even know, hear, or see it. It’s been a while but sometimes I must even use a walker just to get out of bed. I have a cane for when it becomes such a struggle just to move. The day is met with groaning and moaning from pain. It doesn’t even matter if I did anything physical the day before, it will and does happen.

I do also feel I must include what is going on mentally in this period as well. If pain isn’t even present, guess what? I can still have a down day. It’s as if my brain doesn’t even want me to be awake. It’s essentially burned out and just wants to keep resting where it must do the least amount of work to function. Even if I force myself to stay awake, I’m fatigued throughout the day and it’s hard to mentally apply myself to anything including eating. I’ll move from the bed to the couch where I just do what might be mind numbing things like scrolling through social media, or zoning out while watching TV, or even just laying there doing nothing. I can almost guarantee you that I will fall asleep on the couch numerous times throughout the day when I’m like this.

You would be amazed at how little people tend to understand this. I remember growing up and being told I just needed to get outside and get some sun. Or I just needed to get up and start doing something and then it’ll all be good. This same mentality still seems to apply today. Even some professionals in the mental health community still seem to think this old style of thinking is an appropriate answer.

If I could just force myself to do something, don’t they think I would have already been doing this? The cold reality is that there are just days where my functioning capacity is extremely minimum and no matter what I do or attempt it is the way it will stay. It is a part of FASD and it sucks but it will happen and the answer isn’t just to brush it off. Let’s be honest here. When you add PTSD, stress, primary insomnia, anxiety, and widespread physical health issues to the mix, these down days are going to be more frequent and there just isn’t anything that is going to change that.

Up and down days need to be understood better and need to be addressed appropriately. On our up days we can accomplish a lot to our strengths but on our down days we need to be able to allow ourselves to not feel guilty, bad, upset, or even feeling worthless. We need to embrace what we can and can’t do and so do the people around us. When we can fully embrace our capabilities, it is then we can understand what we need for a better and healthier mind and body.