I just wanna run out to the middle of my street and scream, to the top of my lungs, a blood hurdling scream!!! I'm mad, Im agitated! I don't want my friends with thier problems to compare them to mine! Especially when's small surgery will fix thiers for life!!!! I read y'alls posts and a lot of you have numbness, and weakness, and can't walk!! It makes my blurred vision and right eye blindness seem sooo minute to your problems, but yet it's soooo big to me! I know that thus is the begining if my journey, and I will one day be complaining of the same things as you! So, I sit and pray..... I'll keep my messed up vision, please don't affect my legs!! I'm mad!! I just want to punch someone in the face! Where is Weezer Boudreaux when I need her?
You have every right to be angry and any other emotion that you feel! Venting those emotions is the best thing that you can do. Don't bottle those suckers up or you might snap at someone for something tiny that pushes you over the edge. Yuck, been there/done that.
I do want to remind you that you are at the begging of your journey and while we all have SO MUCH in common we all progress different.
Just tonight I was at the grocery and talking to a lady in a wheel chair. She was a sweetie pie but I was thinking that's me down the road! Well neither you or I know if we will ever be in wheel chairs or what other body/mind parts might fail us instead.
I know that it is so much easier said than done but don't look to the future as a count down towards future disabilities that will happen. I gave my self a good mental shake tonight and reminded myself that yes they might happen but hey they might not.
P.S. I get pissed off when people with little fixable problems compare themselves to me too!!!!!!
Tiffany, people do not understand MS and maybe, in their own way, they are trying to empathize with you. That being said, I'll scream along with you. I am sick of my neurologist not listening to me. My MS is not bad - I'm not in a wheelchair, so I SHOULD BE HAPPY! With the pain I used to have behind my kness and inside my elbows, I think I would have preferred to be in a wheelchair without the pain! My neuorolgist never put me on Neurotin - just said - don't know what it is and said to see my regular GP. DO NOT EVER LET ANYONE, EVEN YOUR NEUROLOGIST TELL YOU THAT IT ISN'T SO BAD.
IT IS BECAUSE WE DON'T KNOW WHAT IS GOING TO HAPPEN. YOUR BLURRED VISION AND NIGHT BLINDNESS IS REAL AND IT IS HAPPENING TO YOU. YOU HAVE A RIGHT TO BE MAD BUT YOU CAN POST TO ME AND THE OTHERS AND WE WILL UNDERSTAND YOUR VENTING AND MAYBE, ONCE IN A WHILE, EVEN HELP.
I COMPLETELY UNDERSTAND WHAT YOUR FEELING I AM ANGRY EVERY DAY FOR HAVING THIS.I CONSTANTLY COMPARE MYSELF TO OTHER PEOPLE AND WONDER WHY DID I GET THIS??
I FEEL DEFEATED ALOT AND VERY FEARFUL OF THE WHEELCHAIR TOO. I HAVE VERY BAD BALANCE AND HAVE TROUBLE WALKING STRAIGHT. I HAVE BEEN DIAGNOSED FOR 1 YR.
I DON'T KNOW WHAT TOMORROW WILL BRING. HALF THE TIME I'M TRYING TO BE POSITIVE AND ACT LIKE I DON'T CARE THAT I HAVE NO CONTROL OVER MY FUTURE AND HALF THE TIME I FEEL TRAPPED IN THIS BODY AND IT FEELS LIKE A NIGHTMARE THAT I CAN'T WAKE UP FROM.
I HEAR YOU. THIS FORUM IS REALLY THE ONLY PLACE I FEEL LIKE PEOPLE TRULY UNDERSTAND.
I just wanted to say that we all have something in common, but how we are experiencing MS and how far we are on our journey is individual to each of us. So don't compare yourself to others as what is going on for you right now is real for you.
So go out and find a nice big open space and scream if it makes you feel better. I read your post and thought..thank goodness I am not experiencing optical problems as I live rurally and need to be able to drive..particularly while my husband is in Afghanistan.
I am sure that we all have a need in us to occasionally recognise our fear and anger and having a good rant and putting it down here on the forum really helps so just go for it whenever you need to...you will be understood and receive support.
Hey, can I join in, please, please, please - I just want to have a good scream too.
Just like you, when I look around and see some people with MS I feel like I shouldn't be so fed up with this after all my symptoms (at least at the moment) are not as bad as others.
Well, I mentioned this to my neuropsychologist and her reply was that everything is relative and if you're in a wheelchair and can't get out much but you have never worked and you like watching the TV, then you will struggle but you will cope. If you can walk some distance but you suffer with crushing fatigue, problems with eyesight, some cognitive issues and lots of pain and you are trying to hold down a job that requires you to be alert, read a lot and synthesise complex issues, then your MS is having a major impact on you. As this is my situation this took away some of the guilt that I was feeling such a mess when I considered my sx nothing in comparison with others.
So it is all relative, look at what your MS is doing to your life, look at the symptoms you are suffering, examine just how scared you are that your eyesight is being affected in this way but you have no control over it, and then realise that you have enough to make you scream.
So go on, if you can't go out in the street then do what I used to tell my kids to do when they needed to take their temper out on something - Pick up a pillow in the bedroom and thump **** out of it, scream into it, throw it around the room, stamp your feet, get a box of tissues and cry, swear at everything from your computer to the guy on the radio, and accept the anger you feel and that your need to scream is justified.
So come on girl, I will if you will – if we both go outside and scream loud enough d’ya think we'll hear each other with me in the UK and you over there in the States.
I'll join you in being "pissed" off at people who are still fortunate to be fixable or not have anything wrong with them and the cruelty they can show.
I got on the bus yesterday for the first time. It was rush hour crowded but there was one seat left in the front, a reserved for disabled seat. This lady sitting on the aisle had her bad in that empty seat by the window so I asked if I could sit with her. She moved the bag, but expected me to climb over her to that seat. I asked her if she could scoot over and she said "I can't. I asked if she had a diability that prevented her from moving over if so that would be understandable, but she said no that she just wasn't going to sit there.
I was feeling weak and wobbly from the heat, using my cane of course, and told her out loud in front of everyone "look, are you going to make me keep standing here with the bus already moving? If you don't have a good for not moving over, then either move or find another seat." She got up and stood and said "well, now you can have the whole seat to yourself". I was embarrassed but mostly for her and her ignorance. Everyone looked at her but no one said a word. If I had been a passenger and saw that behavior I would not have hesitated to say something to her. But no one did. It made me wonder why and if they saw my cane and just thought nothing of it as I appear healthy otherwise.
So, we deal with people's assumptions every day and it can cause our daily struggles to be so much harder if not physically then emotionally. I was still so upset about this thing that I had a hard time falling asleep last night and I don't need that kind of thing keeping me awake at night.
I am right there with you girl! Sometimes it seems as though people have lost their minds. I too am at the beginning of my journey with left side vision loss,cognitive issues, bladder incontinence, weak and painful legs, and some side effects from the IV solu medrol going on. It really feels awful to me! Maybe compared to others, it is mild, but as a person who returned to school after having my children to become a teacher and has always been very active - the I can't drive, not presently at work, and walking with a cane (painfully) - sure ***** to me! One of my very best friends who has colitis offered to me that she is sick and tired of feeling bad and has chosen to feel good - now she feels fine! OK- I wish I could do that. This is not a choice. I seem to use all my energy lately just to get out of bed.
It would be great if others really understood how we feel, especially those close to us, but I am trying hard to give them a break. They seem to not know what to say and maybe they think they are saying the right thing? I keep going back and forth on if they are insensitive or just don't know better.
I cried hard at my best friends comment and have barely talked to her since. I am not even sure she knows how upset I have been. Anyhow, between how we feel and the mystery of our future journey, this is so hard. I plan to scream a bit and really was glad to know that others feel the same. I know this sounds a bit nuts, but your post makes me feel so not alone and I hope all the wonderfully honest responses help you feel that way too!
So scream, yell, rant and rave..and know that your journey is personal and ***** as much for you as those who are further progressed. Do not feel guilty for feeling! Tomorrow may be a better day - maybe not - but at least you get the crappy feelings off your chest and start fresh!
Smile and know so many people on this forum are so great to give us a safe place to let it out - and use this tool!
I am sending lots of (((hugs))) and my prayers (and screams) are with you!
I totally understand as I too am pissed off! Like others have said before - don't minimize your issues - they are yours and they are not easy to deal with. - I should use that myself too I guess :)
I was reading a book last night and it had a chaper called "but you look so good" - it was talking about the invisable symptoms we all may deal with that no one knows we have, how no one knows we are sick.
I was explaining this to my dh and he says well you really aren't sick - it is not like you have cancer. I tell him but I am sick it is a chronic illness - he didn't really respond - I was too pissed and hurt to even argue and try to explain to him how much that hurt.
He sees it as nothing has changed since dx - everything is still the same - and I guess it is - I am just having a hard time feeling like it is the same - especially the not knowing if the walking issues and other things will just be here forever now and just get worse?!
DH is very supportive most of the time - but man that one was tough - wanted to punch him in the face!
Thanks for starting the rant for me to add to :)
So anyways...........your issues are real and it is ok to be angry - don't minimize :)
Go for it!!!!! As you can see many of us feel exactly the same way. I don't think everyone is being dismissive, they just don't "get it". Either way it is frustrating and maddening !!!
Trying not to think of "the want ifs" can be hard sometimes especially when you are having a particularly bad day. HVAC (Alex) says stay in the present if you get scared as you know exactly what TODAY brings.
I am going to print this thread for my DH and family to read. Thanks for starting it as it did hit a nerve and it is nice to know I am not alone.
MS S--Ks! but that is okay. "I have MS it does not have me"
It is hard for me to be angry about my MS. I felt sorry for myself at first. Would I trade with my friend Phil, who was training for the Ironman and a truck did not see him on his bike leaving him a quadrualegic? Would I trade with my friend Marybeth who lost her husband and soulmate at 50 to Multiple Myleloma after two years of illness, xmas week? What about my friend Stacy who needs a lung transplant, but is the most positive person I know? Then this week I found out a good friend with a small son has aggressive breast cancer? Or my sister who died of HepC now that was nasty.
I am sure I would take back the MS over any of these things. I am not being dramatic this is just what I have been thinking about in the last few days. I never got mad about the MS for me. I got mad my husband had to go through it.
Ironically what is getting to me is three weeks of Poison Ivy! I have it in my eyes and ears and it is making me feel evil. But this too shall pass. LOL.
"True contentment comes from dealing the hand you are dealt." It does not matter what happens to you in life it is what you do about it."
Oh god, I love and thank all of you!!! I love this forum! I feel like I'm not alone!! It makes the stupid, stupid comments people make, sooo much easier to deal with!! To hopefully make y'all smile, here's my fav!! I had to go to work with my saline lock, arm wrapped. Many people asked what was wrong, and many were satisfied with my " oh, I need meds for optical neuritis" answer! But, of course, a few were persistent! So, I said, well I gave multiple sclerosis!!! Ok.... Get ready...... I actually had several people tell me how they were told in school that they too had a crooked spine!!! Hahahahaha! Yes, they were just trying to be nice!! I forgive thier ignorance, and thank them!!! I can ALWAYS use a good laugh!!! Thanks again, to all of you!!!!
Just when you think you are alone in your misery- this group will come along and join in. We all have the tales and are more than happy to share, as you can tell. Laughing is always better than the alternative.
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