Why me?

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

Why me?

Postby bromley » Mon Aug 28, 2006 12:44 pm

I often ask myself the why me question - of course the answer is genes and some bad luck coming in contact with the environmental trigger (or perhaps it was God punishing me for laughing at the girl with cerebral palsy at infants school, which seems a bit harsh as Hitler never got a neurological disease!).

Anyway, here is a booklet on genetics for boring nerds like me. Might be handy for those who suffer sleeping problems with this disease.

Ian

http://www.msif.org/docs/MSinFocusIssue8EN.pdf
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Postby robbie » Mon Aug 28, 2006 2:13 pm

I guess everyone knew I would reply to this, You wonder why me alright, I can’t help but think also that if things were the way they should be all the brutal diseases in the world would go to the criminals and pedophiles that deserve this crap but oh no it’s the kids and the people that want to do things with their life that get it.I go back as far as I can in my family and there is not a hint of ms so if its genetic it stops here . You would think after 13 years I would be over being pissed off but I’m not, This is the time when I should be making the most money , raising my kids, enjoying things that are a given for most and that includes sex. I have none of those and many more why why why…
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Postby Grumpster » Mon Aug 28, 2006 2:19 pm

Bromley,

The why me question is often on my mind. I try and tell myself that is just the way it is and try to remember the others out there who have suffered a much worse fate. I know that to be true, but I still can not help asking myself, why me? This sets up my depression and that is something i deal with regularly. I try to remember everyday the good things I do have in order to off set the constant MS bummer in the back of my mind. Since my O.N. is getting worse in both eyes I can never have a moment that I am not physically reminded that I have MS and it is not getting any better.

I find that I awake to jolting tremor that runs through my body. I was given an Rx for Baclofen (spp), but it made me feel funny.

Anyway, your post got me thinking and i wanted to respond.

Best Regards,

G
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Postby sh8un » Mon Aug 28, 2006 4:25 pm

I have to say that I never asked why me. I just told myself that shit happens and this is the shit that happend to me. This does not mean that I am not pissed off about having this stupid disease. I have seen so many other things in the hospital to really ask why me. I have seen childern with all kinds of tubes coming out of every hole to wonder why me. We all have days that we feel sorry for ourselves and we always look at others who are pissing away thier healthy lives and want to scream at them and tell that we would not be doing that if we were in thier shoes. The thing is that I am sure no matter how bad we have it, there is always someone else out there who has it worse.Someone that would trade places with any of us. Like the mother of a child with terminal brain tumor. I can give you so many other examples but I guess I don't really want to remember.
So, for me, I hate every moment of this but I will not say "why me?" I will try my hardest to not let this disease take my soul.
NN
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Postby robbie » Mon Aug 28, 2006 4:55 pm

I try and try to think it could be worse and it could be. You think of others that are so much worse off than you and look for some releif in that but at the end of the day it's just you and only you. There are so many people out there that have it the same or worse but when you find it hard to put on your shoes those people aren't in your thoughts it's just what is happening to you. Your attitude towards ms is great and i would have to say that i thought that way in the eariler times but it has worn on my body and mind to the point i'm at now. Why me is just a question that to most with any disease is very justifiable.
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Postby sh8un » Mon Aug 28, 2006 8:16 pm

Robbie
I am in no way saying that ppl should not ask the why me question. It is part of the grieving process that goes on with this disease. I also have days that I feel very sorry for myself and I do not always have a great attitude believe me. I just was saying that I have never asked that particular question. I hope that you get some professional help...it sounds like you are at a very low point in your life right now. I have had my share of psychiatrists and she really helped me. I really just want you to feel better and I know that you do too. It is hard to do on your own and maybe others can help. I am worried about you. I know that I don't know you but I somehow feel like I kind of do because I feel connected to you through this disease. I hope that What I have said does not offend you.
NN
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Postby CureOrBust » Tue Aug 29, 2006 1:44 am

I am sure i have asked myself this question at some stage, but the one that really drives me is "what am i going to do about it".
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Postby Wonderfulworld » Tue Aug 29, 2006 3:10 am

It's interesting I never thought why me, more like "why not me". My big question is generally WHY - for all of us, so that we can find a cure. I am still struck by the mutual exclusivity of gout and MS, and bilharzia and MS. There has to be a potential treatment at the very least in one of those.
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Postby robbie » Tue Aug 29, 2006 6:06 am

Interesting how people look at things, i'm not offended sh8un.
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Postby bromley » Tue Aug 29, 2006 8:25 am

My intro to posting the booklet on genetics was sort of light hearted - the bit by Professor Compston was called Why Me? But it does show how different we are. It's interesting that some take the view that there are many much worse off (although when I think of Richard Pryor at the end there cannot have been many worse off). I take the opposite view - that there are many better off (all my friends and family are, thankfully, healthy - I'm the odd one out).

The bummer for me is that you only get one life (to my knowledge) and we've ended up with this stinking disease which to me is quite different from the vast majority of non-neurological diseases in that (i) it can affect almost every function (sight, thinking, mobility, dignity) and (ii) it gets worse (it progresses - maybe slowly or maybe quickly). So my friend who had a hernia and my next door neighbour who had triple by-pass surgery got better and got their lives back - not something that we have experienced (yet). And the way I try to deal with it is to be grateful for the 39 years before this disease, to be grateful for today and to be hopeful that in the not too distant future they may be able to stop the damage being done and maybe repair some of the damage. The lesson I have learned from this is that we don't really have much control over how our lives turn out at all, even if we try our best to reduce all the risks.

Apologies if this appears as a sermon, but I think the emotional issues relating to this disease are the really difficult ones, and one of the best things about this site is that we are all in the same boat trying to get our heads round this disease.

Ian
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Postby EyeDoc » Tue Aug 29, 2006 8:37 am

robbie wrote:I guess everyone knew I would reply to this, You wonder why me alright, I can’t help but think also that if things were the way they should be all the brutal diseases in the world would go to the criminals and pedophiles that deserve this crap but oh no it’s the kids and the people that want to do things with their life that get it.I go back as far as I can in my family and there is not a hint of ms so if its genetic it stops here . You would think after 13 years I would be over being pissed off but I’m not, This is the time when I should be making the most money , raising my kids, enjoying things that are a given for most and that includes sex. I have none of those and many more why why why…


Robbie...may I ask what problems you are having related to MS that have stopped you from working, raising your family and having sex? I realize these are personal questions, but they are very big worries of mine :( I am currently 31, have been diagnosed for 3 years, and suffer from fatigue and erectile dysfunction.....pretty crappy for a 31 year old :(
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Postby robbie » Tue Aug 29, 2006 9:22 am

hi EyeDoc My work stopped with my balance and legs becoming bad i can't drive anymore. My wife and i decided not to have kids, she has type 1 diabeties and with the ms we thought it just wasn't a good thing for us. as far as the sex goes there isn't any, everything started slow but keeps getting worse. I got it when i was 28 so for 41 i guess as it goes i'm doing good. Its just not a one time adustment, things are always getting worse and changing so it seems like when you just get use to dealing with one thing something else starts.
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Postby EyeDoc » Tue Aug 29, 2006 10:04 am

robbie wrote:hi EyeDoc My work stopped with my balance and legs becoming bad i can't drive anymore. My wife and i decided not to have kids, she has type 1 diabeties and with the ms we thought it just wasn't a good thing for us. as far as the sex goes there isn't any, everything started slow but keeps getting worse. I got it when i was 28 so for 41 i guess as it goes i'm doing good. Its just not a one time adustment, things are always getting worse and changing so it seems like when you just get use to dealing with one thing something else starts.


That is just damn depressing, albeit the reality we all face. Sigh.

Today just is not a good day to read this thread :( I'm feeling too melancholy to be thinking about the future today.
Last edited by EyeDoc on Tue Aug 29, 2006 10:33 am, edited 1 time in total.
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Postby REDHAIRANDTEMPER » Tue Aug 29, 2006 10:10 am

well its a good question why me why you why us..who knows the reasons but i figure in some stupid twisted why there is a reason for it....i know i have started to appreciate everyday i can get out of bed in less then 10 min..i am happy if i go thru a day that i dont have tremors....i guess for me it has made me enjoy life far more then i did before..in some ways it has made me a better person...in other ways it has slowed down everything i wanted to do.....of course i just got a divorce this yr and of course this happens to me..so ya can guess how my dating life is going....not well..have a boy friend who cares to a point..but you can tell that this bothers him alot specially when i can t do stuff....but his still is here...i am not sure for how long but i am not going to stand here and say please stay...not me....but i do know i spend more time enjoying my kids and my friends and less time worrying about money or stupid silly things i use to worry about....so why me..well i guess i stopped asking myself that about 6 months ago and decided to enjoy everything i got right now...i try and not look at the future to scary for me..so one day at a time...okay blabbed again and not even sure if any of it makes sense...lol...my mind gets going now a days and i start writing or typing beofre i forget...the bad part of the diease,,,,so if some dont make sense then i am sorry....

chris
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