I am finding life particularly difficult these days. The medication changes I made in hospital are taking a long time to make a difference for me in everything but my sleep. I am thankful that I can sleep without trouble but I’m frustrated that it is summer and I can’t be out doing the things one likes to do in summer such as doing more activities with friends or making new friends going out to do activities myself. Summer is an awful time to do medication changes. But I’m hopeful that down the line my energy will increase and that I won’t feel so awful in the mornings and sometimes through out the day. I hope that my stomach won’t be upset each day as it is now and that the head cold that’s been bothering me will go away. The combination of these things makes it extremely hard to function even at home.
I have this idea that life is passing before my eyes and I am missing it. I didn’t feel it so bad in my twenties but now that I am thirty I feel as if my old friends and acquaintances and even my best friends, have moved on with there lives while I am standing still. Honestly, I’m a bit jealous that they are able to complete more degrees and move up in their jobs, find the person they are meant to be with more easily, and can do all the activities that living consists of. There is so many things I want to experience and do but I end up not being able to do them because I am chronically fatigued and experiencing trouble with medications.
Think about just walking and spending time in the park; going out late at night and not suffering for it for days afterwards to go to a club or just have drinks on the patio; being able to drive and take trips; building a career; doing school at a regular pace and having the memory to do it; travelling in Europe or elsewhere; having the chance to meet new people because you have the energy and transportation to do activities like going to the gym (to lose weight too), taking classes at a university or just at home; and being able to visit your friends and relatives so easily; not getting tired after two hours of shopping; having babies or pets; and lots of other things that don’t occur to me now.
I’m just tired of feeling left behind and I do my best to deal with the life I have. But this summer I feel like I am going backwards. I try I really do but I don’t understand why I have to be the one with a disease while it seems everyone else gets to live normal lives. I know this isn’t entirely true that other people are suffering too and much worse fates than I do. But it is extremely frustrating to get to a point where you could taste independence at twenty-three-years-old and then be thirty and still live at your parents house, have no career, made bad relationship choices, and know that it would be to hard for you to live on your own and make an independent life for yourself. To have that health would be great.
It’s my hope that one day I get to the point where I can live alone and be able to do the things an independent full-fledged adult can do. But now that seems so impossible. They don’t even really know what I have? How can you fight something you don’t know? That is in your brain but physical at the same time?
But I am happy my parents let me stay at home and cook dinner for me, because that is when I am often my worse. I am happy that I can go out the little I do and that I have money to shop and go to the spa sometimes in the middle of the day. I’m happy that I can do classes from home and I look forward to finding some class that I can do once of week in the day or if I get a little better maybe go do once a week at night. I am happy that I can write and spend a lot of time doing that, although one day I would like to get a job writing — maybe impossible I know.
And even if I can only do a little at a time, one day I am going to go to Italy and France and experience the culture and life there, call it a dream. I am thankful though that I can do little vacations to places such as Montreal and Las Vegas. I am happy I have brothers and friends that I can do some things with, and I am happy I had the experience of a relationship for four years. So even though, things seem bad, some really great things are happening for me. I just wish I felt not so sick lately.
I’m a goal-oriented person, it’s hard to see that you cannot complete the goals you have set for yourself in life. But I think maybe, that is how it is for everyone. I just wish that if you are able to live a normal regular life that your thankful for it, because life can change in an instant.