So before I begin this How-to I want you to know that this is a blog prompt given to me from a host in the chat room of Starbright World. SBW is an online community for kids and teens with chronic illnesses and their siblings. As some of you may know I have had life long medical issues due to Mitochondrial Disease. So this is a how to with what I’ve learned over my life…….
So, you just got diagnosed with a chronic illness. CONGRATULATIONS! You are now part of an exclusive club! From being diagnosed at birth to diagnosed in your teens or into adult hood we all have to make some changes to our life style. For those of you who haven’t had the luxury to have been diagnosed at birth and are having to deal with a lot of new dietary or physical limitations, here are some tips just for you!
Get a Dry Erase Board, or Several…
Now this one might be for food, but its the same basic concept. Draw the days of the week on there, or get fancy magnets like I did, in any way you want. You can draw lines, you can makes squares for a mini calender, whatever your little heart desires. Here’s the key as to why I say this. It is going to get hard to want to do everything you have to, but it is oh so satisfying to be able to cross it off for the day. A long while back I used mine medically because I had gotten so bad, but now I use it for everyday things! Write down ALL of your procedures, medication times, special activities such as flushing a line with Saline and Hepron or doing a breathing treatment. This nifty thing can even come in handy for keeping track of upcoming Doctor’s appointments among other things.
Get Rid Of All Bad Food!
It might be a temptation to use up the rest of what you’ve got int the house that is no longer on your diet, but the Doctor’s are just doing what’s right for you so you must listen to them! Get a friend or family member to go on your diet with you so you have someone who can help you and know what’s going on. It is not going to be easy and this is one of the many reasons why its better to have been diagnosed at birth, but you will get through it. Go online and find some great recipes using Ingredient Trackers. They can help you find some great things to eat that are actually good for you, but look just as amazing as all the junk food you could have before. Super Cook not only searches recipes by ingredient, but it also excludes by restrictions such as gluten free and no nuts and individual ingredients.
Start Working on Those Excuses
So all of these would be excellent examples, but make sure to come up with some convincing ones of your own related to your specific illness. They come in handy for some of those days where you just don’t want to get up out of bed. Eventually though, you’ll learn when its best to pull it off and when you shouldn’t because if you use it too much you might not be believed when you are really feeling down and out.
Board Games Are Now Your Life!
Get used to it, you’re going to have a lot of free time on your hands during the bad times. I have a giant bag full of Board Games to take to the hospital and it even has my name on it. You quickly become a pro at playing all 8 players of monopoly by yourself while getting both a sick pleasure of demolishing yourself and hating that you were crushed to a pulp. On the plus side you can cheat a bit and the only one you’re hurting is yourself! I once got so good at Connect four that it got to the point where my Mother was the only one who could beat me, I was the self crowned champion of the fifth floor, I pretty much made my social worker cry and swear off connect four, she still refuses to play with me years later, and I took on a two doctor team that was getting help from a whole playroom full of kids and child life specialists who had played me and I still kicked their butts. They were in fact trying very hard to beat me because they were very upset that they didn’t, they also had to get back to work and I think that upset them more.
Get a Mirror
You’re going to get good at talking to yourself just to entertain yourself so you might as well have someone to look at besides a wall even if it is your reflection. It’s okay to call yourself crazy, I do daily.
Books are Your New Best Friend
You’ll be surprised how quickly you can be absorbed into a world and be left wanting more. It also magically makes the sun go away and the moon come out much faster then normal.
You’ll Always Be Waiting for the New Season
Netflix, Hulu, TV,or other. These are going to become boring because you will have trouble finding something new to watch. Have fun waiting for the new Season!
Reorganize Your Bathroom Storage
All those medications have to go somewhere! Eventually there will be no room left for anything but!
Now all that’s left to do is figure out what to do with all those empty pill bottles….
Eh….I guess we’re ready for Halloween!
Book Suggestion: Starry Nights by Daisy Whitney