Many of my followers who are going through similar situations, will probably relate to this. Before we go into feeling your worst, I need to clear up some misconceptions some people don’t understand. Just because you see a person who has autoimmune disease smiling, dressed up, laughing and making conversation doesn’t mean in anyway they feel great that day. When people who live with the disease start to understand their new lifestyle, they have to decide whether to push themselves or not. I learned this story when I was going through intense medication therapy in Michigan, and to this day I still apply this to my everyday life.For people who read the story I was taught, I am going to attach a link to a story I learned here. I’ve even bought a spoon necklace I tend to wear around my neck frequently as a reminder of the story.
As a college-aged girl, I always want to keep up with all my friends 24/7 365 days of the year. Clearly, thats still impossible but yet after 3 years I still have trouble understanding that. Somedays I feel the most amazing I’ve felt in a while and that motivates me to try to squeeze a lot in the day. I’ll try to exercise, see my friends, get my homework done, clean etc. These days are the days I am willing to except that I’m sick and I feel like it’s such a reward to wake up feeling great. The next day is usually the struggle.
I’ve had struggle days for 3 years now and I still don’t know why. For some reason, when I excert a normal amount of energy, I’ll pay for it in severe pain. Take today for example, I was so sick of my normal routine, the last 3 days I tried to book myself with plans. I wanted to pretend for just one second that all the pills and the pain disappeared. So I did what most people do and make multiple plans for one day and today I’m paying for it.
I woke up a numerous amount of times last night, uncomfortable in my bed. Finally after 10 hours of sleep I woke up in an awful amount of head pain and soreness throughout my whole body. The headache was pretty bad, but when you add fatigue and weakness into the picture, you feel like death or at least I do. The simplest things were the hardest for me today: taking a shower, texting, making food etc. I couldn’t leave my bed until around 2 pm this afternoon and that was only because I gave myself an injection of Toridol along with my other emergency medicines. My big activity was making it downstairs today. I know that’s hard to get through your mind but boy, when it hurts to do absolutely anything (even nap) you gain a whole new perspective on the world. I feel like now I kind of have an insight into the elderly world. I understand, why some elderly people have no filter, no patience, or are grumpy all of the time-hey I didn’t have hope I’d be there too. But these days are the longest and hardest days to go through. It’s like I want to have people around and keep me company but at the same time I just want to be left alone, I don’t want to talk to anyone, have to listen to anyone or do anything. Even when someone is doing something downstairs, or listening to something loud it aggravates me because it makes the pain worse. Of course, I can’t yell at them its not their fault I ended up like this.
If there’s one thing I’ve taken away from my death days it’s that it’s okay not to always be brave or positive all of the time-no one can do that. It’s okay to shed a tear, or scream into a pillow, but once you’re done having self pity, you have to get back up. It’s like what everyone says once you fall down, you just get right back up, and that’s what all chronically ill people need to do. After all, you can’t stay on the ground forever.