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Thoughts on my illness a compilation of posts from sharon about my experience of dealing with a lifetime of chronic illness all written in summer 2002
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Re: welcome and introductions
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Hello to everyone,
Thank you to R------ and M--- for a great new site. I'm 27. I have had CFS/OI/FMS since I was in elementary school. My onset was so slow that its hard to say exacty when my illness started. I had a definite pattern of symptoms by the time I was ten. I was pretty seriously disabled by the time I was 15. I have three kids Alisa, whos 4 1/2. Kevin Jr, whos 23 months, and Abbey, whos 9 months. I am managing ok with my illness right now. I am still fairly seriously ill and my family helps me a lot with my kids, but I am not bedridden like I was for so many years.
I hope to be an active part of this forum. My biggest interest right now is making the transition from being a child with an illness to an adult with an illness. That is an issue that has been hard for me when in so many ways being sick keeps you dependant on help from parents longer than normal. Finding a way to develop a strong self, seperate from your illness is something that I think teens with illness need help to learn to do. Also, because I spent so long being told that my illness wansn't real I ended up learning to suppress all of my feelings and always be happy because if I wasn't happy then people would blame my symptoms on depression. I want teens with CFS to know that this illness stinks and its ok to have bad days, days where you can't cope, and days when you need to vent, and I hope that this will become a safe place to vent and get good feedback from friends who have been thru similar situations.
Anyway hello to everyone!
sharon
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Re: Welcome and introduction
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Welcome! your insight here should be incredibly interesting. I was misdiagnosed as having school phobia before I got my CFS diagnosis. And the experience that I went thru back then still linger today, holding me back, making it hard for me to trust psych people. Even at a time when I sought help for post partum depression, I was really unable to open up in therapy at all and it was a total waste of time because I just didn't trust psych people. I'm sure your input would be valuable to parents who are having to deal with their kids schools. I wish we had had the knowledge and resources when I was ten that are out there today. But I really feel that all that has happened in my life has happened for a reason and I am very happy with the person who I am becoming in spite of, or probably because of, all of this. So, before I babble on anymore, again, welcome, and I look forward to seeing your input on the site.
sharon
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Re: Congrats to R------- and M---
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M-------,
Welcome! Great to see you here. I know having another oldtimer with your experience and insight to dealing with this illness will be a great addition to this site. I can't believe how long it has been since all of us had first made contact.
I am doing amazingly well compared to where I was back say maybe six or seven years ago. Whenever I start to feel to sorry for myself, I can look back to the day R------ and our friend A-- came to visit because we all really though that I wasn't going to make it. That usually snaps me out of it fairly fast. My illness is here, and it is by no means easy to deal with but I can deal with it. That is a huge improvement from where I was.
We are dealing with the same mito issues as M--- but don't have a final diagnosis yet. I am waiting for DNA tests from a study I was in at Childrens Hospital of Los Angeles that was for young people with dysautonomia and gi motility issues that was looking for MIDS (maternally Inherited Dysautonomia Syndrome) a mito disorder. But our genetsist here says that preliminary bloodwork looks like that may definately be what we are dealing with. So we will see what comes out of all of that for my family.
My project of the moment is learning to drive. I got my permit last week but so far haven't driven for the first time yet. Between my being scared and my family not wanting to teach me, this may take a while. But one of the women in my post partum depression group actually is willing to teach me so I guess I am going to start to do it next week when she is between her new teacher orientation and the begining of the school year.
Beyond that, we are living one day at a time mainly. Little Kevin turns 2 today. Which I can't believe. In a couple weeks, when the fall semester at preschool starts Alisa goes 5 half days and Kev will go 3 half days. The preschool said he can come for free since they know I'm having a hard time. We got so incredibly lucky with this school and the owner being so understanding. Maybe I'll take a class in the spring if everything is working out with them in school. Our County College offers on line classes that are mostly independent study so I can work around my and the kids schudules easily. Possibly a sign language and/or yoga class thru the adult school in the winter. Who knows? We'll see when the time comes. Right now I'm amazed that I'm at a place that I can even be thinking about it.
Anyway, I'm babbling as usual. Let us know what is going on with you and your family.
Sharon
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to read the full conversations or to learn more about
CFS/ FMS/ OI in young people go to the
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~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
~~~~~ "Challenges are what make life interesting; overcoming them is what makes life meaningful."
-Joshua J. Marine
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