Having a chronic illness is like having a child, without actually having one (or at least my thought). You are brand new to this, don’t know what to expect, listen to all the advice you can’t get but it comes down to you. So you experience the pain (labor/delivery), mental/physical drain (sleepless nights), hopes & dreams (happy/healthy child), always being prepared (diaper bag packed with extra clothing, diapers, snacks, nuks, toys, etc..) and people always asking you questions (about the baby).
1. Experiencing pain.
Getting out of bed in the morning can be sooo painful, not to mention when part of your treatment plan is to drink 3 liters of water a day. The pain to just simply picking up a water bottle or cup, can send you through the roof. A perk being though you develop a high pain tolerance, that most “normal” people wouldn't be able to withstand.
2. Mental/Physical Drain.
Trying to figure out what you want to accomplish in a day...drained, accomplishing one thing on the list...drained, going to the bathroom...drained, making a sandwich or cooking...drained, picking out clothes for the day...drained, making mental lists...drained. Needless to say no matter what you do you become drained and coffee won't help.
3. Changes in Hopes & Dreams.
All you want in life is to accomplish those hopes and dreams (your hopes and dreams of having a family or dream job changes because of a chronic illness), but then when you find out you might never be able to, it destroys you, causing more mental/physical drain.
4. Preparation.
You have to make sure you have a “Go Bag” ready which is I guess similar to a diaper bag. You have to make sure you have water, (salty) snacks, extra clothing for when you get cold, medications, phone charger, and phone. All because you never know what the next moment is going to bring you.
5. Question Asking.
Before I go any further, guess what this causes?...Mental/Physical drain. The constant, “You look great, and not even sick. What is wrong with you?”, or “How are you today?” (Yes, both are friendly, but when you asked them multiple times a day you become drained!) Sometimes, you just wish you could record yourself to make it easier on yourself. But you would rather be a friendly person and acknowledge and respond to them even though you are in pain and exhausted.
Having a chronic illness is a “blessing” and not. Yes, you know what’s wrong and know how to help yourself. But, you have to be extra mindful and responsible of everything you think, say, and do. At the end of this you know you’re going to have good days and bad. Just like parenting you have highs and lows. You just have to learn to cherish the good moments.