Hi
@sleepingbeautyxxx , glad you have found these wonderful forums so early in your illness! So much support and so many knowledgeable people here. I would've also suggested everything Trish and Sam said. I'm currently studying part time (tertiary level) so I thought I'd give you some study specific tips.
I have a small luggage bag on wheels that I use when I go to college as my text books are heavy and I have to walk from the train station. At first, I used a good quality backpack, but the wheeling luggage is just SO much better. When I was in high school, we rented text books from the school, so my mum paid double and got a second set for me. One for home, one for my locker at school. It still meant I had to carry around a little from class to class, but my bag wasn't insanely heavy to and from school.
I also have everything set up around me in bed so that on a poor day, I can still do things. I have one of those tablets on wheels that you pull over the bed (like hospitals often have) that I go cheap from Aldi. I use it for my laptop or my books. I have a pile of books on the opposite side of my bed, so I can study whatever I want, whenever I want, without getting up. I find that being able to lie down or lie on my side and study is much better than up at a table. I can last longer and think clearer.
I study in short periods, depending on how I feel, and prioritise my subjects. Do your hardest subjects when you feel your best, then the easier subjects can still be done when you feel not quite as well. Plan ahead, so that there's no leaving assessment to the last minute - that is a huge mistake in CFS. Doing study and assignments gradually is so important. While I do much of my study on my laptops (because writing too much can hurt), I still do one subject of written notes because otherwise I think it will be too hard when I get to an hour long exam and have to write that whole time!
Talk to your friends, family and teachers. It took me 8 years before I worked out how important communication is. By that time, I'd lost most of my friends - partly because I couldn't physically or emotionally maintain my relationships anyway, but also partly because they stopped inviting me to things because they assumed I'd just say no. Don't be afraid to say no to things and to tell friends about your needs, such as if you need them to speak quieter. Your health is number one priority, but if you communicate well you can encourage friends to work with your health.
Always have a little food and a bottle of water with you. Drinking plenty of water is so important, as it is beneficial to so many parts of our bodies. I always have a bottle with me. Sometimes, I feel terrible if I haven't had food in a while and just a little snack is all I need to stave off a bad crash.
I have an app on my phone called chronic illness assistant. I've found it's really helped me to understand what triggers symptoms, what times of day are my best/worst and what symptoms are closely interconnected. (
https://chronic-illness.com) It might also prove to be useful in explaining your health to everyone. I now have an easier time explaining things to my doctor, as I am used to rating individual symptoms out of 10. I don't use all aspects of the app, as I think that might be overwhelming to keep up with, but I track symptoms, activity, meds and water. Great for determining if meds are working or really seeing the effect of post exertional malaise, which can be hard to get your head around in the beginning.
Finally, always remember that you have a very
physical condition. It's easy to doubt yourself because everyone's idea of CFS tends to be so flimsy and that it's not really that bad. But not overdoing it at the start of your illness is really important - many of us did and we sincerely regret it. Science is proving that we have biological differences in the way our bodies are working. Our cells are literally not making the energy they require to function effectively. The process of coming to terms with chronic illness, understanding it and accepting it's impact on your life is hard and we all struggle to work through the emotions at times. You're life changes a lot with CFS, but it's still a wonderful life, just different to the one you expected to have.
Sorry for the long post, kept thinking of more tips and didn't realise how long it had got lol
