posted
I am in highschool i use to love sports (captain of crew team) then my lyme which was dormant that i had gotten from my mom began to act up in my junior year.
I couldnt get help from my teachers i was too tired and physically incapable of going anymore to school and no one believed me.
I went off and on to school for four months straight until the point where my body just simply couldnt tolerate it anymore and i just couldnt get out of bed.
At that point it was apparent that i hadnt been making it up... despite that the experiences and hell i went through to get out of school when i couldnt tolerate it included the nurse telling me how i was full of it and how her sons friend had it and how i should be ashamed of mocking the disease, and my teachers mocking me in class for missing school becuase i was sick...
then not too long after i dropped out of school i had no friends anymore all of the ones i previously had didnt care so i just gave up and after deleted my facebook so i didnt have to deal with them anymore.
I can't bare the fact that i can only gain weight, and not exercise i miss being in shape, in general i miss being social. Its been two years and im heading to college next year. i am still very much sick and half of the time bedridden i have lost all motivation, and no depression medication works.
i cant say i have faith in god after what ive been through in my life previous to lyme... i am scared of going to college next year simply because i never know when im gonna be sick, im always exhausted, and i just dont have motivation...
now im a bit gloomy and i try to be outgoing but i dont have the energy to do even that... i force myself to hang out with a small group of people ive met but they dont understand how hard it is for me to go out to parties and such so i just say im busy or other excuses,
i just end up being super awkward because im too exhausted to hold up a proper conversation. at this point im not sure what or who to care about i dont have anyone in my life i can specifically call important
i am grateful that i was lucky enough to get a lyme doctor but i am severely depressed and i dont know if there is any point in life anymore. prior to being sick i had alot of "friends" outgoing, funny and studios...
i cant stand the fact i use to be like that and when i look at myself i am disapointed in myself....
[ 12-09-2013, 05:47 PM: Message edited by: Lymetoo ]
Posts: 2 | From virginia | Registered: Dec 2013
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posted
Night, you're among friends here. We believe you. No-one here will mock you. No-one will be disappointed in you--quite the opposite!
I'm so very sorry about the hell you've been going through. No-one should be treated that way. It makes me especially sad when this happens to a young person.
I'm so impressed that you're going to college! Going through the application and admissions process is a lot when you're sick. Congratulations on being accepted!! Good for you.
But I understand that it's scary too. If you're moving away from home, you can find a new Lyme doctor (LLMD) and a support group through this site. There will probably be other students at your college who have Lyme.
Make sure your advisor and your class dean both know that you have Lyme. Perhaps your LLMD could write a letter for them?
I'm glad you have a Lyme doctor. Have you had any improvement since being treated?
The social isolation you talk about is horrible. Most people on this site go through very similar experiences. But there ARE people out there who will love you for yourself without your needing to "pass" as healthy. You will make friends again! Important ones.
Hang in there! Posts: 431 | From New England | Registered: Dec 2011
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posted
This may help a little. It's a good way of explaining to your friends what you're going through. It was written by someone with Lupus, but applies to Lyme and other chronic illnesses:
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Welcome, night!
An important question:
Are you seeing a really good Lyme doctor and getting treatment? You didn't mention this, so I wonder.
There is a lot of info in "stickies" at the top of the Medical Questions forum about Lyme and finding a good Lyme doctor (probably at the top of the Finding a Doctor forum, too).
If you don't have one and/or aren't getting good treatment, that is essential!
Keep coming back here. This is where you can get all the support you need, short of a doctor. But you can also get lots of help with finding a good doctor, evaluating your doctor and treatment, if necessary, etc.
Posts: 3771 | From around | Registered: Mar 2008
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posted
Hello again, night! Rumigirl's question and advice about reading the "stickies" are important.
Before you go to college, you can contact your college's Student Accassibility Services (or Disability Services). Given that you're fatigued and often sick, you can apply for special accommodations. All colleges are required by Federal regulations (and often state and college regulations too) to give these accommodations.
This is not a form of special treatment. It's a way of leveling the playing field and giving you equal access. It's required to be totally confidential: you have control over who you tell, or don't tell. Your advisor and professors will know. But they have to give accommodations for many students. You wouldn't stand out in their minds.
The kinds of accommodation may include, for instance, a reduced course load, taking exams in a distraction-free environment, extended time for exams, a couple of days extension on written assignments, rides to and from your classes if you have impaired mobility, and/or a note-taking service (someone hired by Accessibility Services attends your class and takes notes when you can't).
Over and above this, you can ask your teachers if you can audio record their classes to help you take notes and process the information in your own time. You can also ask them for additional extensions and incompletes for periods of illness during the semester. In my experience (I'm a college teacher), most will say yes!
Many colleges will require you to get neuro-psychological testing to evaluate your needs. This is a good thing, as it moves them away from the controversy over the Lyme diagnosis and toward what your capacities and needs are.
Perhaps other people on this site who have children at college with Lyme could tell you if their children had any problems with eligibility for special accommodations.
You can do this, Night!
Posts: 431 | From New England | Registered: Dec 2011
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posted
I just called my college's Accessibility Services to ask about the practice for students with Lyme disease. I spoke to an assistant who isn't the main decision maker, but she told me what they ask for:
(1) A letter from a doctor confirming the diagnosis and any test results. They make recommendations about accommodations the student needs.
(2) A neuropsychological evaluation, which you would have to get done. This can be expensive, but if your doctor orders it, it can be covered by insurance.
(3) A completed accommodations request form.
Then the program director or learning specialist evaluates your application. There's an appeal process.
I hope it helps to know what the steps are. They can be broken down into bite-sized tasks so that the process isn't overwhelming. Good luck, night!
Posts: 431 | From New England | Registered: Dec 2011
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You've come to the right place. The people here are so empathetic (they can relate) and supportive. No one here will judge you for being sick, and you won't find those "sunny day friends" here (friends who leave when life gets tough).
I'm so sorry that you've lost so many friendships. Keep in mind though that someone who leaves when you need them most is no friend at all. Let them walk away. I've been sick with Lyme for 17 years, so I've gradually acquired some faithful, equally sick friends. Even if they don't have the same disease, those with a chronic illness will understand and accept you. Two of my best friends have MS and a brain tumor, respectively.
I too am proud of you for pursuing college even when you don't know how to make it to class. I was blessed in that I didn't get sick until the very last day of my graduate program. You're a trooper!
another way I've found faithful friends is through my church. I know it's hard to have faith after all you've been through, but God understands that. I even tell Him I'm angry with Him sometimes. He's big enough to take it and still love me. If you're interested, just as Jesus to reveal Himself to you, and He will. Reading through the Psalms comforts me, as the writers are so bluntly honest about all their emotions. Our culture tells us to bury our negative emotions, but that's NOT what God intends for us to do,
I know the feeling of being isolated as well. I'm a single mom of two, and I rarely get a chance to talk to another adult. I get it; it's tough!
Don't expect too much of yourself. With Lyme, sometimes the best you can do is to keep breathing!
So glad you're here.
-------------------- Ellen _ _ ___________ _ _ lyme disease dysautonomia Chiari malformation anxiety Posts: 72 | From Birmingham, AL | Registered: Dec 2013
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posted
HI, "night"! You came to the right place for help!! I'm confused as to whether or not you have an LLMD helping you. Please clarify for us.
Maybe we can offer more suggestions if we know more about your treatment.
It is quite common to be depressed from Lyme. It's not just "YOU" .. it's the Lyme. If we can help you get that treated, your depression should get better.
In the meantime, just know that we care about you and want to help!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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You say you have a lyme doctor. Please tell him/her of this depression so they can include it in your treatment? Or even your GP if they are included in said treatment.
I actually started realizing how depressed I was, so told my GP I'd like to try an antidepressant. She heard me.....Good luck lovie........
Posts: 867 | From PA | Registered: Jan 2006
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I am a lot older than you (63) but also have the experience of high school, and for the past 7 years of having Lyme, the pain of being misunderstood and sometimes dumped. It hurts, more than I like to admit.
While I believe I have learned things about people, what is important, and empathy from chronic illness; I expect I will get better, and (so to speak) emarge in the land of the healthy with insight I never could have found. While it is hard, I maintain relationships with some healthy folks, and quite easily with folks with challanges. Its not all I would like, but between treatment and symptoms, its all I can manage. I also developed some symptom friendly interests (mostly reading adn even audio books via kindle.)
This damn illness would be so much easier to get better from if not for the social, medical junk that gets in the way. Its an illness, not a weakness, not your fault, not something you can overcome with will power or any other psych magic. I had a relative tell me if Diana Nyad can swim 100 miles I can surely do more; I told him yes, I think of her as I barely manage the two blocks to send a letter off. I push back on BS.
I had to keep changing lyme friendly doctors in search of improvement. I believe you can improve, even be cured, and that the BS you had around you will remembered, but not overwhelming.
Also I found college much more interesting (and accepting) in every way than high school.
I wish some people your age who got better posted here, as it be good hear from some people your age.
A small example of things we with long term illnesses know (and laugh about).
My brother recently wrote me an email about how misrable and upset he was that his cold and cough had dragged on over 10 days. Wow! The injustice of it.
No doubt he went to bed, watched tv, had folks waiting on him. What, no lectures that its all in your head and the he needs to push himself, etc, etc. Lucky for him, its seen as an illness, just an illness, which we too should be accorded.
Most healthy people I have know when they get sick make a much bigger deal of it, expect more support, and do less in spite of it, than we do every day. So the next time some jerk belittles or otherwise offers goof ball psych advise, wonder how she/he acts with minor illnesses, and ignore it/them. Best wishes, Rob
Posts: 18 | From NH | Registered: Jun 2012
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