Hi Elise and welcome to HealingWell. I'm so sorry you have to deal with all of this at such a young age. It must be really hard not to be able to do the normal teenage kinds of things. My illnesses all started when I got mono when I was 18. I was a senior in high school and was really never the same after that, but at least I was healthy most of my teenage years.
It is really hard for other people to understand just how bad cfs is and how much people suffer from it. I'm giving you a link to a page on a website called butyoudontlooksick.com. There is a thing called the Spoon Theory and it is a great way to describe to family and friends what it is like to deal with chronic illness everyday. It is written by a woman who has lupus, but it can apply to any chronic illness. I printed out several copies of it and gave it to my family and close friends. Here's the link (I couldn't figure out how to make it clickable, so you'll have to copy and paste it):
Please try not to be too hard on yourself, but I know it's easier said than done. I'm hard on myself too and feel like I am letting my kids, family, and friends down.
I'm glad you joined. Hang in there and feel free to ask any questions or just vent if you are having a bad day. We are here to listen and we do understand what it is like to live with cfs.
Diagnosis: Suspected Lupus 2004; Raynauds 2006; Sjogren's 2006; CFS 1991; Mono 1985
Meds: Plaquenil 400mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 200mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain
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