Just need to vent....

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Just need to vent....

Postby jcbatt1 » Sun Sep 12, 2010 5:36 pm

Does anyone ever just have a day where you are just pissed off at the shear fact that you have MS?? I think I'm having one of those days. I'm not playing the "I'm a victim" game, but just wish some things would improve. I've tried to remain strong along the way, but today was just a little off.

I had my first real breakdown since I was diagnosed (its been almost 2 months). I did the solumedrol in the beginning and just took my 5th Avonex shot last night (which I'm already dreading taking every week). Most of my symptoms have subsided except for the fact that I can't see a damn thing. Everything is blurry to me, I can't make out people's faces until I'm standing about 3 feet away, watch TV from any distance, or read a street sign unless I'm right up on it. This is by far the most frustrating symptom I've had of MS so far. I just wonder if this is ever going to improve? I'm 29 years old, I just got married and I feel bad that my husband is bound to my MS problems with me. He swears up and down that he is not going anywhere, but I can't help but feeling guilty.This diagnosis came out of left field for us. I started having symptoms in May, was told by 2 different doctors that I had shingles (I know, I thought WTF?? SHINGLES???). My primary care physician was not convinced so she sent me to a neuro who diagnosed me after an MRI and spinal tap confirmed it was MS. Some days I forget I have this because I feel normal. Some days my eye sight gets a little better and things aren't as blurry and the next day I'll wake up and its bad again. Its like God is playing a bad joke.

If anyone has days like this (which I'm thinking most do) please feel free to weigh in and vent.

Best wishes,
Julie
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Postby mattalleng » Sun Sep 12, 2010 10:54 pm

Hey Julie, my name is Matt, I am 20 years old and was just diagnosed about a month or two ago ( losing track of time, I can't tell if it's been days weeks or months anymore). anyways, I feel for you because right now I'm getting much better with the exception of my eyesight, going through the same exact thing as you. In fact I can barely read what I'm writing right now, and that's with glasses...

Of all my symptoms my eyesight has been the most frustrating, it's hard to be happy about any other change of symptoms because it seems like my eyesight just gets in the way... everything is blurry and though my glasses helped that first my vision keeps tweaking so my prescription is no longer perfect... the other day I even started getting headaches again.

I'm a firm believer that your mental health/ attitude directly affects your physical body and healing process and so, I've done everything in my power to maintain my attitude and not fall into a pit of depression. My advice to you, would be find something you enjoy and focus on it. I enjoy writing, something I couldn't do at first because my vision was so bad, but the reason we as human beings still live upon this planet is because we naturally have the ability to adapt and overcome.

So, I really can't read and I have no fine motor control in my left hand, how the hell am I supposed to write? I adapted. To read I copy and paste everything to a new Word document and make the letters huge and in addition I use my computer's narrator software to read out loud as I read in my head, it kind of helps. To write, I got some voice recognition software so that I don't need my left hand to type. So now I have accommodated my handicap.

Now that I can continue writing, I started a blog which you will find in my signature, this blog has become the focus of my life, I work on it all-day because I enjoy writing and blogging gives me something to focus on. If I did not have this hobby I would lose my mind because I'm not one to enjoy laying around listening to TV especially since watching is not the most enjoyable thing with my eyesight right now...

I have also always talked about writing a novel and now I have the perfect opportunity to do so. Maybe I'm not in the best physical condition for writing but honestly I'm writing more this handicap than I was before because I've turned my life focus to this hobby, it keeps me positive, keeps me busy, and makes time fly! Not to mention it's keeping me in touch with other people which greatly helps my attitude.

I know not everyone likes to write but I really do feel that journaling is the best thing you can do with MS whether it's a personal journal or a blog to share with others. It helps to look back at the progress you've made, your ups and downs, etc. because then you can look back and compare where you are now to where you were then, so even if you're walking is not 100%, you can look back and read about when you were stuck in a wheelchair and that makes you appreciate whatever walking you can do at the moment, you know?

That's all just my opinion, everyone is different though. Sometimes you just need to vent because no matter what you have in your life, your still going to have your ups and downs. I'm not very religious but I can honestly say I know how you feel, sometimes I just look up at the sky and ask " what are you bored up their?'... and that's why we vent, feels good and sometimes that's all you can do just don't dwell, don't get yourself stuck in a ditch, just remember it's just one of those days and it will pass.

As I tell everyone here feel free to message me if you just need a stranger to talk to, you can also check out my blog where you will find my e-mail and a link to my facebook. best of wishes,-Matt

(sorry for any spelling/grammar issues lol)

http://mattsms.blogspot.com/
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Postby Algis » Sun Sep 12, 2010 11:12 pm

Please have your eyes checked for cataracts. High doses of steroids may quickly build up cataracts in the eyes. I have been almost blind too for more than 2 years and now that they are removed I see like a 15 y.o. kid.
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Postby mattalleng » Mon Sep 13, 2010 2:46 pm

Hey, just wanted to let you know I finish running article about the importance of a positive attitude on my blog, just thought I would post a link in case anyone was interested in reading:

http://mattsms.blogspot.com/2010/09/imp ... itude.html

Hope that helps, take care!

-Matt
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Postby jcbatt1 » Mon Sep 13, 2010 5:06 pm

Algis, thanks for the advice. I will definitely keep that in mind. I saw a specialist and he basically told me there was nothing he could do. The best thing he could say was hopefully it will come back in 3-6 months. All I can do now is sit, hope and wait. I am not a patient person especially with this!

Mattalleng, thanks for your post. Although the situation of having MS sucks big time, its nice to know I'm not in this alone. I also have a very hard time seeing despite having contacts and some days get mild headaches and other days they are horrible and the rest of the day is shot. What have your doctors said about your sight coming back? For just being diagnosed with MS, you have a very positive outlook. I totally agree with you that your way of thinking whether positive or negative will have a say in how a person feels physically. Despite the eye sight problem with your writing, its awesome you have not let it discourage you to the point where you let it win. I have started doing Yoga, its the first real form of exercise I've been able to do since my symptoms started clearing up. I was SO damn tired after work it was all I could do to come home and fall asleep at 6 o'clock. I used to be very active and in the gym several times a week. That seems like another lifetime ago. Feel free to shout at me anytime. Good luck with your writing, continue staying positive, and I hope your sight gets better quickly!

Julie
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Postby ppicklee » Mon Sep 13, 2010 7:13 pm

Oh Julie, I can totally relate. Yes to positive attitude and everything. I was diagnosed within the first year of my marriage. It was just our 17 year anniversary. We have very quirky/warped sense of humor. I like that about us. So if you need to vent... VENT. Can it be shitty (whoops... can I say that ? ?) YES it can be. It won't always be crappy... but if you cannot vent here... then where ? ? Feel free
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Postby mattalleng » Tue Sep 14, 2010 10:51 am

Well, I don't know what the norm is on vision health for MS, but, my eyes and optic nerves are actually a great health. The reason I can't see is that I have a lesion on the part of my brain that interprets the signal from your eyes... so my vision problem actually has nothing to do with my eyes, rather, is pretty much all my brain....

So, I'm pretty much waiting for my lesions to clear up and then hopefully, in theory, my eyesight will be restored. I'm getting new glasses on Wednesday because my current prescription doesn't seem to be working anymore, hopefully that helps because I am starting to get frustrated with my vision again...

As far my attitude LOL, I'm just too stubborn and full of pride to let MS get the best of me LOL typical guy, huh?
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