MS sucks
14 years ago
General
For a while after my first episode I had been mostly fine. Though I had bear chronic fatigue as well as a while where I was haivng mood swings (which was very disconcerning for me because my mood tends to be pretty flagt and doesn't swing around) I also started to have muscle spasms in my back causing sharp pain, but by the time school started I was begining to feel better. I only had issues with my back once so far.
I feel it's getting worse now. I have had a constant headache for days. My wrists and hands are constantly feeling this dull pain. My fingers feel somewhat numb and I have trouble moving my pinky. My hands are extremely weak. This has happened before...around the time when I had my first episode where I had constant double vision and vertigo. I'm scared of that happening again.
It makes it difficult and painful to even play video games, and typing is more difficult. Drawing is completely out of the question. In fact, the original reason why I stopped drawing in the first place was because of these issues (which started around June last year) I have to wear wrist splints again.
I'm sure the teacher would laugh at me if I tell him I didn't do my homework because I can't hold a pencil long enough. He already scolded me for writing too lightly and my grade has suffered because he can't read my handwriting.
Right now I'm debating weather or not to go to class. Mostly because driving will be difficult in this state. But I know that if I miss 3 classes I will be dropped (stupid college policy) so I only want to miss classes if I'm really sick.
I'm absolutely terrified of how bad MS can get though. I mean, right now I live basically normal, just with some issues. But I hear stories of people who can't walk, or can't use their hands at all. People who can barely function both physically and mentally because of this disease. I don't want to become completely paralized and have to rely on other people just to simply live. I want to be independant and be able to work...
I should go to class. Maybe wearing the wrist splint might be proof enough for him to believe me.
EDIT: I decided to go to class. I'm glad I did because it turns out we had a lab exam that I totally forgot about. I had trouble with holding the minerals we had to examine but I managed to do it. Luckily we're off for the rest of the week and hopefully I'll be better by monday. I didn't mention the homework to him though. He's a decent teacher and all, but his personality is jerkish.
I feel it's getting worse now. I have had a constant headache for days. My wrists and hands are constantly feeling this dull pain. My fingers feel somewhat numb and I have trouble moving my pinky. My hands are extremely weak. This has happened before...around the time when I had my first episode where I had constant double vision and vertigo. I'm scared of that happening again.
It makes it difficult and painful to even play video games, and typing is more difficult. Drawing is completely out of the question. In fact, the original reason why I stopped drawing in the first place was because of these issues (which started around June last year) I have to wear wrist splints again.
I'm sure the teacher would laugh at me if I tell him I didn't do my homework because I can't hold a pencil long enough. He already scolded me for writing too lightly and my grade has suffered because he can't read my handwriting.
Right now I'm debating weather or not to go to class. Mostly because driving will be difficult in this state. But I know that if I miss 3 classes I will be dropped (stupid college policy) so I only want to miss classes if I'm really sick.
I'm absolutely terrified of how bad MS can get though. I mean, right now I live basically normal, just with some issues. But I hear stories of people who can't walk, or can't use their hands at all. People who can barely function both physically and mentally because of this disease. I don't want to become completely paralized and have to rely on other people just to simply live. I want to be independant and be able to work...
I should go to class. Maybe wearing the wrist splint might be proof enough for him to believe me.
EDIT: I decided to go to class. I'm glad I did because it turns out we had a lab exam that I totally forgot about. I had trouble with holding the minerals we had to examine but I managed to do it. Luckily we're off for the rest of the week and hopefully I'll be better by monday. I didn't mention the homework to him though. He's a decent teacher and all, but his personality is jerkish.
FA+

I mean, for instance, you can't force someone who's blind to read something he cannot, and stuff like that. Maybe skipping school isn't an option, but it's not a reason for discrimination.
If your marks actually suffer from it, it's not your fault and it means they have to rebalance it.
... But it's not like if school was the most important thing anyway. Before anything else, I hope there will be a cure for it, or a better treatment...
I don't know if it helps, but I have a friend who had some strange disease with an horrible name in latin that I forgot completely ( Basically, it was destroying her lungs ) and while she was thinking there was no hope and stuff, they gave her a new treatment that was just invented or something, while she was totally thinking that she would die some years ago when they diagnosed it.
Sure, it wasn't a cure... But now she's living with it ( I still have to ask her what is that thing because I forget everytime she tells me )
Anyway, don't give up.
I am taking an alternative treatment for it and it does help a lot. I do hope one day they have an actual cure though.
I should see what I can do. Though I'm sure I'll get better eventually, since that's how the disease works. It comes and goes. Which is why I'm hesitant to ask for any sort of help since I don't need it most of the time.
Hang in there Aura <3
Moving along, I must ask if you have ever used, or know of, your college's Adaptive Learning Center? Almost every university has one and they are super resources for providing such services as note takers, assistant's to help write out your test answers, and encourage professors to allow you to take exams at alternate times so extra time can be given for you to finish as your condition does not give you the same privledges as a student without a disability.
On a personal end, I couldn't have done my MBA without the aid of the Adaptive Learning Center. They helped me fight for extra time to take exams and offered technology to assist my efforts so I didn't have to strain so much to overcome my visual disability. I should've used the service during my Bachelors, but I was too stubborn and believed I should be "normal" when, in fact, I am not and it's okay that I need a little extra assistance to get through certain situations.
Another thing I was curious about is if you have, or already have, got in contact with your state / region's "Office of Vocational Rehabilitation"? You have a most identifiable condition in which they most certainly can help you out with. For me, I got special glasses, canes, CC TVs, and a portable CC TV so I can read and see things that, without them, I could not. They also helped pay for most of my college tuition, too!
Overall, I hope you continue to do your best to fight back MS as best you can by maintaing a strong spirit and not letting the condition take hold of your life beyond what it already has. It's rough dealing with a condition that you know, and have seen, has an "End Game". That said, my PM box is always open if you ever want to share any thoughts and/or just want to talk. As you know, I am no stranger to a condition that keeps you on your toes and I'd be more than happy to be there for you if you should ever just need to reach out and share some feelings with someone. :)
All my best, Aura. Hang in there and know that I'll always be thinking of you in nothing but the highest regard. Keep on being inspiring and never stop working towards your goals. MS, like Glaucoma, is a mean machine, but our minds are stronger and, with them, we can continue to show the world we are more than our conditions make us out to be. :)
I've never heard of the Office of Vocational Rehabilitation either. I'm thinking that's a really good idea too. I don't know how to get in touch with them though, but I should probably figure out how. Or at least ask my mom xD she's helpful.
I'm glad that I met you ^^ You've been extremely helpful and inspiring. I do have to admit though that PMing people makes me extremely nervous and I'm not sure why, so I don't do it that often. But I could try if I have stuff I want to talk about with you ^^
I do worry that I might lose my mind someday, because MS can also effect the mind. I know it has effected my emotional state for a time (but it's not doing that anymore luckily) but I know if you can be strong about such a terrible condition, I can at least try to be too, even if it gets worse.
If I knew what state you lived in I could easily look it up for you. Though, truly, I don't know if you are in the US, Canada, or someplace else. *Blush* However, if you are a US resident, call your local Social Security office. They should be able to tell you where your closests OVR office is and, thus, give you the contact info you need to get the ball rolling.
In the meantime, if you are established with the University you are transfering to, definately make contact with their Adaptive Learning Center. (Your university may have it by a different name. So, if that's the case, just ask the Registrar, your forthcoming Advisor, or someone affiliated with Academic Affairs to speak with the department in charge of adaptive services for those with disabilities)
Once you get in contact with them, they can meet with you and work out an early plan so that, on day one of class, your professors are aware of your condition and are less inclined to be jerks about any handwriting and/or other issues your condition may bring about that cause you to have trouble with your studies. Moreover, the Adaptive Learning Center works with folks in OVR and may also be able to help you establish contact with a counselor to get other arrangements made like thos I mentioned above. I had my own apartment in college and it helped A LOT. As one with special needs, I'd definately take advantage of getting your own place so you can feel safe and not worry about being crammed in a dorm with a bunch of folks who may not be able to either understand and/or work around your special needs.
As for anxiety, I would recomend checking with your university to see if they have a psychologist on-site. The university I went to for my Masters did and it was a service open to students to help adapt. As you are having feelings in relation to your condition, I would advise taking advantage of the counseling your university may have to offer so that you can openly talk out your feelings.
If your college doesn't offer a therapist, OVR can also help you get at least a few free sessions with one. It took me 5 sessions before I uncovered why I have such a hard time coping with the fact I may, one day, really go completely blind. However, now that I have, I feel a lot better and am glad I went and vented my deep down angst towards my condition and worked it out with someone who is there to listen without judging me beyond giving advice and helping me stay on topic. :)
There's also one more thing on anxiety that can help. I currently take anti-anxiety medications at a light level to help me keep calm after all I've been through. It's not cheating or being weak, bur rather a way to help give your mind clarity when the world reminds you that you're not like the rest of it. I felt terrible when I had to recently get back on Lexapro, but it has helped me to heal since the "bloody eye" situation and, as such, I will probably stay on it as I know my condition is not ever going to get better and will only get worse. So, having that little "help" is definately good. If you're interested, talk to your local doctor and they can get you started on a low-dose anti-anxiety to see if it can help your nerves a bit. With a new school coming up and thoughts of your condition effecting it, I'd safely say it's not a bad idea to look into it as medicines like those for anxiety take 3 to 6 weeks to fully kick in and its best to stay ahead of anxiety than deal with the pains it brings when you're suddenly whalloped with it. Especially when, as your body is the cause, it's hard to run away from it. :)
I hope all this helps, Aura. Please feel free to write me anytime. Also, do know I am always rooting for you and am very glad to know I can look up to you as well for inspiration as I battle with my own condition. It's better when you're not alone and I can say being able to relate with you means a lot to me. Here's to a bright future for the both of us. :)