A Spoonie's Day Out

So in my last blog post I told you guys about what I keep in my med pouch. Now I’m going to explain my thought process and all the planning that goes into going out for a day of fun. This is just my own thought process , you don’t have to do what I do but I would say that planning is vital for most of the Spoonie population.


Obviously we start with the basic planning and most of it revolves mainly around where I’m going to be at, as well as who I’m going to be with. So generally I’m either with my parents or I’m with my cousin. And really though if I’m not with either of them then someone might’ve kidnapped me or I’m taking a nap. And I generally don’t like going and doing spur of the moment things because my body just can’t keep up anymore honestly. So I really need to know in advance so I can get extra rest because I hate running out of spoons half way through a fun day.

Outside vs. Inside

I wanted to touch on outside vs. inside independently from planning because It’s a pretty big problem for me. It’s basically like the weather rules my body and the rest of me is just along for the ride.

So if I’m going to be outside I obviously need to look at the weather. I have to dress appropriately so I don’t overheat or get too cold. I also have to factor in sunlight, and decide if I need sunscreen or if I can get by with just wearing a jacket or long sleeved shirt. Many of the medicines I have to take make me sensitive to sunlight; well honestly at this point it’s any kind of light. I also need to see if it’s going to be very humid or not, this really matters because with my asthma it would be extremely difficult to breath. So we might need to actually do something inside because of extreme humidity.

Now if I’m doing something indoors, especially if I’m going somewhere new, I look up the busy times for where we’re going. And then my goal is usually to go at the non-busy times because it’s somewhat of a lower infection risk. And then obviously I have to double check and make sure I have my Vogmask on me, I have to try to avoid getting sick at all costs.

 And then if I’m going to be out for a really long time, like at the mall, then I have to consider using a wheelchair. And time of year is also a factor of when and where I go out. If it’s winter and it’s super cold out then I know the mall is probably going to be pretty crowded and I shouldn’t go. And if it’s summer and we don’t have thunderstorms then I know outdoor places like the zoo and parks are going to be really crowded.


Once I have everything planned out then I have to think about what splints/braces I’m going to use that day. If I feel well enough to do a decent amount of walking, then I’ll wear my knee braces or my air casts for my ankles. They keep me stable when I try to walk long distances and I utilize certain muscles that I don’t normally use without the air casts. But if I decide to use a wheelchair when we get to our destination then I probably won’t brace my legs but I’ll wear my wrist braces. That’s so I can roll myself a ways so no one will have to wheel me along until I get tired. And again I need my Vogmask so I don't pick up any germs from people around me if we're going to a place such as the mall. Though if we go outside in a large enough area like a park I might not need to wear it.


I double or even triple check my med pouch to make sure I have all my meds. Like inhalers, stomach medicine, Sumatriptan and so on. I also have to remember to pack night and day meds with me just in case I decide to stay at my cousins at the spur of the moment. That’s really the only thing that I can do on a whim really, but I suppose I’ll take what I can get.  


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