Hello again everyone. I have been out for a while getting used to a new diagnosis. For that I am so sorry!
The viruses that I had back to back a few weeks ago triggered a new problem to show up. I have recently been diagnosed with POTS, and it has made these past few weeks pretty busy and confusing. I haven’t figured things out yet, but it has been getting a little easier to put up with each day.
The hardest part for me is knowing that it most likely won’t go away. There is no cure, only treatment. However, having supportive friends and family has made all the difference! 🙂
For those of you who don’t know much about the illness, click this link to read more.
Over the past few weeks, I have had many pleasant interactions with people regarding my situation. However, some aren’t sure what to say to me or how to talk to me. So, without further ado…
- You don’t look sick. One of the best and worst things about EDS and POTS is that they are invisible illnesses. There are no visible clues that I am ill, but that doesn’t mean that my struggles are not real. Listen to me when I say that I can’t do something. My brain wants to do so many things that my body just can’t do. I am not trying to inconvenience you or be lazy!
- But you did that yesterday! I can be almost back to normal some days, and within the course of minutes, I feel like I can’t walk or need to go to bed. On every good day, I worry about doing things that will impact the next day. If I do too much today, then tomorrow I might not be able to leave my bed.
- You just need more exercise. I hear this one a lot. What other people don’t know is that just getting up and walking around gets my heart rate up to maximum training level. Going to school and walking to my classes is as much exercise as I can handle most days.
- You need to get out more. It is true that sometimes I stay home too much, but I don’t stay home too much because I want to. I want to get out and participate in everything, but most times I just can’t. I’ve usually already used up all of my energy doing the things that I have to do, like showering, eating, and going to school.
- I wish I could stay home all the time. You might wish that you could relax at home all the time, but what I am doing at home is not something you would want to do. When I stay home, I am feeling so terrible that I can’t leave the house. I feel the way you would feel after having the flu for a week, but all I’ve done is go to school.
- You just need to push yourself a little. I think what most people don’t understand is that trying to function like a normal person again is pushing myself. I don’t feel normal on the inside, and it’s hard not to resort to staying in bed all the time. When you see me dressed and in class or out of the house, I pushed myself to get there. I don’t need any more pushing!
- I’m tired all the time too! I get 9 hours of sleep a night, and even then, I wake up feeling just as tired as I went to bed. If I can’t get 9 hours, I am a mess and can’t function. It will hurt to walk or hold myself up, and I will feel like I am going to pass out every time I sit or stand up. Your level of exhaustion after throwing up all night, then running a mile, then donating a pint of blood, is similar to how I feel during the day. I know that you are trying to relate, but unless you have a chronic illness too, you can’t relate to my level of tired.
- It’s all in your head. If changing my thinking could make my illness go away, I would be back to hiking mountains and riding my bike in no time at all. I don’t want to be sick! I just have to live with it.
- You should be more positive. Most of the time, I am positive. The only people that I let see the non-positive side are the ones that I know care about me. Some days, I really can’t be positive, and I just need to vent. It means so much to me when you listen!
- You HAVE to be there. Most of the time, putting so much pressure on me to be somewhere will make me worry for days leading up to the event. All that worry on the day of the event will cause me to be ill, and I will have to miss. I’m not sure if others experience this or not, but it’s definitely hard for me! Please don’t pressure me unless it’s something very important (like once in a lifetime events-weddings, performances, etc.)! I will always do my best to be at anything I am invited to. 🙂
If you have said any of these things, don’t worry. I know that most of these things are well intentioned! Next time you feel like saying something like that, just remember how I feel. I went from being fully functioning to being disabled in the course of two weeks. I don’t want to be sick, but it’s something that I can’t change. Staying my friend through all of it is all that I could ask for! 🙂
Thanks for reading, and if you have any questions, feel free to message me! I am hoping to post more recipes soon as well, but right now I really can’t promise anything! I haven’t been able to cook in a while. I hope my fellow celiacs will understand! 🙂
If you’re wondering why the spoons, click here to read about the spoon theory. 🙂