What I'd do differently

A forum to talk about the general challenges of daily life with MS.

What I'd do differently

Postby Brainteaser » Tue Feb 20, 2007 7:21 pm

Hi All,

I wanted to put a few thoughts down, given what I have read on the other thread about a poor guy breaking up with his girlfriend, over MS and the very strong opinions being expressed by others. I'm not wanting to venture into anyone else's relationship but to just give my own views on the matter of being in a relationship when at least one party has MS. What I have to say is based on my own experiences.

Background - I'm in my 50's and have been married for nearly 26 years. I was first diagnosed with MS 25 years ago, ie 9 months into our marraige when my wife was 6 months pregnant with our first child. At the time my wife was understandably, absolutely distraught about the future. However, after a while things settled down and life moved on. For 15 years you would not have known that there was anything wrong with me. Life and our marraige was good. We have 3 wonderful children. However, for the past 10 years, my MS has got slowly and progressively worse, during which time I have gone, on an EDSS scale from about a 2 to 6.5. For the whole of our married life I have worked full-time, supporting my family as the sole bread-winner.

As I say, our relationship was excellent for many years but as MS has progressed, things have become more problematic. Initially there were just heated arguments or occasionally things being thrown around the house. A couple of years ago, I had a cup of hot tea thrown over me and I had to be taken to hospital by ambulance. More lately, things have settled down - but there are usually snide comments such as 'You have ruined my life', 'You're not a proper husband', 'No one else would want you' etc etc or maybe a roll of the eyes or some huffing as I am struggling to perform a relatively basic task such as getting my handkerchief out of my pocket or holding my knife and fork properly in humid weather. Mostly I have learned to live with all this. Maybe my wife is simply keeping her options open that I'll either fade away into the sunset or I'll make a miraculous recovery given all the wonderful things I am hearing about on ThisIsMS. Fudamentally though, I suppose my wife like me is just treading water, not knowing what to do.

Whilst deep down I am confident that my wife and I love each other, clearly we would prefer things to be very different. It is human nature. You only have one life and you need to make the most of it. I would wish no ill on any partner of an MSer and can completely understand anyone walking away from a partner with MS. When you boil it all down and peel away the layers of gloss and rhetoric, we are all fundamentally self-centred. If you disagree, then maybe you might ask yourself as to why there are so many starving kids in Africa.

Where my marraige is going is anyone's guess. Who knows? But thinking about being married is a bit like being alive. Just because you are alive today, doesn't mean you will live forever. My wife and I were both very confident of our relationship many years ago, however things change and I am not confident about the future. I'm therefore a little bemused when I read of others expressing a view that they will be together forever after one partner has had MS for 6 months or a year or 2 years. Confidence is fine but MS hangs around for a long time.

Anyway, the subject here is 'what I'd do differently' and although a little tongue-in-cheek, maybe my thoughts might interest others.

1. Firstly, I would not get married or involved in any deep and permanent relationship until I was confident that my MS was well and truly in check. Bromley and Dignan have assured us that MS will be history in 4.5 years, so that might give anyone thinking marraige, a target date to work with. :wink:

2. I would give my MS complete and absolute attention - Priority No. 1.

3. I would strive to become financially self-sufficient ASAP, in order to meet the challenges of the years ahead. This also means no dependants (wife, kids, dogs etc), no school fees, draining household expenditures etc.

4. I would travel the world and see all I wanted to see.

5. I would do whatever I wanted to do in terms of study, career, recreational pursuits etc ASAP.

Maybe MS should be considered like being in prison for a while. And when you 'get out' you can then whoop it up and have a family, kids etc. Also, we should not tell any partner/lover etc of our MS unless we really have to. In the interim, if you have to address your sexual urges, maybe we should not get too involved. If you get really desperate, there is always Thailand or you might even get lucky and do a Ralph Fiennes. :wink:

I could go on and on. Clearly I am being light-hearted in some of my comments (North Americans to note). And I'll probably get flack. But I think you can see what I am trying to say - that I believe when you have MS, then you need to make a Special Plan for Your Life - something which others don't necessarily need to do.

Regards,
Phil.
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Re: What I'd do differently

Postby Melody » Wed Feb 21, 2007 5:52 am

Brainteaser wrote:Hi All,


A couple of years ago, I had a cup of hot tea thrown over me and I had to be taken to hospital by ambulance. More lately, things have settled down - but there are usually snide comments such as 'You have ruined my life', 'You're not a proper husband', 'No one else would want you' etc etc or maybe a roll of the eyes or some huffing as I am struggling to perform a relatively basic task such as getting my handkerchief out of my pocket or holding my knife and fork properly in humid weather. Mostly I have learned to live with all this. Maybe my wife is simply keeping her options open that I'll either fade away into the sunset or I'll make a miraculous recovery given all the wonderful things I am hearing about on ThisIsMS. Fudamentally though, I suppose my wife like me is just treading water, not knowing what to do.





Regards,
Phil.


Wow hot tea is more in the line of domestic it doesn't strike me your wife's coping skills are very good. An opinion not fighting words. :wink:
John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
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Postby REDHAIRANDTEMPER » Wed Feb 21, 2007 8:37 am

i see your point there with everything ya wrote down...am sorry about the hot tea..no one should have to deal with that.....for me its my kids then myself...it took me having problems to put myself even second......but i look at my kids and that is what makes me get things taken care of with this issue.....i hope that i can stand when my kids gradute and that i can remember things that happened in their life when i am older......but i take one day at a time and then one week.....i never take one month at a time.....i look at it that way..am thankful for what i have been able to do until now in my life and i keep hoping it will stay this way for awhile....but i still like your point of view on this....
thanks for the ideas....

chris
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Postby jimmylegs » Wed Feb 21, 2007 10:22 am

well i'll chime in here, i've been avoiding the girlfriend thread because it's so long it looks like there's some bickering going on there.

my relationship appears to be over, it's a year since my dx and we had problems anyway.

this other guy i know, his dad was in a home with SPMS, mom remarried, and dad died in the home a few years ago. i was at the wake. the son is just seeing that in his own future now, working hard on screwing up his biochemistry so that he nails up his own ms coffin.

i think putting yourself first and living life to the fullest is great advice, but i also think alone is wisest for anyone who doesn't have strong support in their relationship. i think perhaps the much maligned beatms would agree. no-one deserves to be abused over getting handed this great pile of crap to deal with.

i recently had a younger guy trying to talk me into something and i was like, i don't need the stress, i'm not going to inflict my potentially painful future on someone else, and i just don't have the time for a relationship right now. especially if i'll end up alone or end up in hospital not only for tests and treatments but freaking tea burns as well. jeez.

anyone who reads this and knows me knows i'm generally positive so any newbies don't take any of this the wrong way - i am usually a ball of sunshine, but whatever, shit happens!
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Postby REDHAIRANDTEMPER » Wed Feb 21, 2007 12:11 pm

yes yes ya are a ray of sunshine there jimmy.....but ya are right shit happens and we all have to deal with this stuff no matter..even if we dont want to cause it will be there at one point in our life.....but we all deserve to have one or two negative days when it comes to all this...i know i have them every once in a while....then on the other hand i have days where i am crazy and making everyone around me laugh to the point that we all forget i have anything wrong with me..sooo good days and bad we all have each other to get thru them...

chris
crazy lady for the day....lol...so i have been told....
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Postby Brainteaser » Fri Feb 23, 2007 5:35 pm

Hi Melody,

'Coping with MS' sounds to me, somewhat oxymoronic - (with respect), the sort of thing a well-intentioned member of the medical profession might say. Anyone who has lived with MS for any period of time is likely to be completely underwhelmed by the notion of 'coping skills'.

Melody, you may have missed the point I was trying to make. I was not saying that my wife is a despicable person, 'boo-hoo, poor me'. Rather, I was trying to say that - Look! a (our) normal, loving, reasonable relationship can be turned on its head by MS. And in this situation you cannot reasonably apportion blame to anyone. It's just something that happens and there aint much you can do about it except to soldier on as best you can.

Also, I don't believe our MS marraige is the exception to the rule. Harry Z in his no-nonsense (I call a spade, a shovel) approach, has told us, based on somewhat flimsy evidence, that 90% of MS marraiges end in divorce. Presumably the other 10% end in murder or suicide! :wink: (that's a joke). But even if the percentage were (say) 50% and you add to that all the MS relationships where there is depression, verbal/physical abuse, murder, suicide, poverty, extreme unhappiness etc etc, then things are looking pretty grim. It would be unreasonable to say that all these people are 'crazies'...... So, my argument is that, sooner or later, MS puts such devastating pressure on normal, average, loving relationships which often come off-track in a variety of ways, that given the probability of it occuring, it would be totally unreasonable to find blame with either partner.

Melody, you seem an extremely nice and caring lady so I am sure you will understand. I am saying that if I had my time again with what I now know about MS, at 2 years of MS I would be looking well forward to 5, 10, 15, 20 years etc., to plan well for the future. No ifs, buts, maybes, take no prisoners, suffer no fools, do what has to be done NOW! If that fantastic cure comes along in the meantime - great! But we can't rely upon it.

Regards,
Phil.
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Postby Lyon » Fri Feb 23, 2007 6:23 pm

Hi Phil,

I'm one of the people who participated in the thread about the guy's girlfriend leaving him...and I'm one of the people whose wife hadn't been diagnosed long ago (a year) and had proclaimed that MS wouldn't cause a divorce in our case.

"Daily Life" isn't a part of the forum I usually pay much attention to, in fact I'd never have come here but I was searching to find where robbie got the statement
Bromley and Dignan have assured us that MS will be history in 4.5 years, so that might give anyone thinking marraige, a target date to work with.
and that brought me here.

At any rate, reading through this thread has been an eye opener, in a good way. Well, NOTHING to do with MS is good so it might be more accurate to say that it's been an eye opener in a necessarily educational way. Admittedly the kind of an education which causes self questioning and an ache in the pit of your stomach and makes me hope even more that the good things I'm convinced are imminent in the next few years in the world of MS really do happen, yet forces me to consider "what's our life going to be like if those things somehow don't materialize?"

I agree that it's not productive when people post things which are negative only to bring everyone else down, but your post and this entire thread, while not giving a warm fuzzy feeling, is part of the reality of MS.

I understand that it can't but I find it a shame that this kind of thing can't be on the general discussion forum and discussed rationally so that larger numbers of people can see it and consider it. I'm glad that I ran across it.

Bob
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Postby dignan » Fri Feb 23, 2007 10:07 pm

Bob, you came to the right place. You have found your answer. Bromley and I were talking about Martian years. So 4.5 is about 9.6 of our years...and we started counting from last Tuesday, so you can figure it out from there.

Phil, thank you for your thoughts. I don't think there's anything to agree or disagree with, I just appreciate getting the benefit of your experiences and lessons learned the hard way (hot tea...ouch!). It makes me wonder what influence MS had on the end of my last relationship, but more importantly that I had better get cracking with my life since the future is uncertain and the cure is coming, but not for 9.6 years...
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Postby Loobie » Sat Feb 24, 2007 6:14 am

D,

You forgot to take into account that it is the year of the pig which always adds a year onto everything (duh!) so it will be 10.6 years. OK, that was a total joke, but seriously, I appreciate Phil's pragmatic outlook on this. If you ONLY look at this type of situation emotionally, it will eat you up faster than shit through a goose. I'm glad someone took the time to talk about this in their head. I am a firm believer that we get steered towards all of our choices by emotion, but we must decide with a mixture of head and heart. The emotions surrounding our MS relationships are absolutely overwhelming. However, we live in the real world and there are so many practical things that have to be considered.

I think in a nutshell what I take from this thread is that the principals may be blameless in all of this when you boil it down to a root cause. But emotionally they become villians because the people are the ones carrying out the actions. I guess (no disrespect to anyone who's been through one) that living with MS may be a bit like living through a war. It will eat everyone up and make them do bad things, but they really aren't to blame. The situation is what is creating the enormous amount of stress; not just someone being selfish or being an asshole.

I mean let's think about this, how in the world do I ever approach being OK and upbeat with the fact that my wife, at some point, may have to wipe crap off of me for let's say...the rest of our lives. How do you keep your chin up and both have smiles on your faces when one person is now responsible for two? Unless you have a fair amount of money and can have others care for you to insulate your spouse from that kind of stuff, I just don't know how it can be done without an effort of Herculean proportions. I'm probably being a pessimist right now, but I have a feeling that when it truly comes down to the horridness of what this can do, I don't know if our marriage (which is the envy of our peers for real) can make it. I sure in the hell hope so because I would be lost without my lovely wife with or without MS.

This thread can become depressing, but we cannot run from the topic or stick our heads in the sand. It will come back to bite us in the butts. At least that is how I have to look at it. I really enjoy (in an information gathering sort of way) reading everyone's thoughts on this. After I read mine, I feel like I really need to start preparing more while I'm still as functional as I am. The worst thing about thinking about all of this is that you see people that make it through this kind of stuff reallly showcased and brought to the front. If it wasn't the exception, it wouldn't be that way and I think what Phil was trying to say is you have to stay on top of it or it will get on top of you.
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Postby Lyon » Sat Feb 24, 2007 11:11 am

dignan wrote:Bob, you came to the right place. You have found your answer. Bromley and I were talking about Martian years. So 4.5 is about 9.6 of our years...and we started counting from last Tuesday, so you can figure it out from there.
Ha! You don't need to hedge your bets on my account dignan. My guestimate is even less cautious than yours and Ian's.

REALLY, so much of this depends on someone's definition of "cure". It's obvious that we are being bombarded from all directions with tidbits of interesting and hopeful research which is progressing in the periphery. I think the situation has progressed to the point that someone would be foolish not to think that the future is looking brighter than it ever has. I won't commit to a set number of years but the situation isn't as it's always been.

Lew, you're right. It's painful to think about that stuff. I hope things don't ever get to that point but those are things we do have to consider.
Bob
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Postby Houdini » Sat Feb 24, 2007 11:37 am

This thread reminds me of something a friend told me when I was first DX'd. It brings me great solace, and I think it's true. He said (pardon the "French"):

"If everyone you knew got together and put their personal piles of shit in the middle of the room free for trade, you would quickly take back your own pile and leave."

MS might be quite a pile of shit, but it can always be worse.
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Postby Brainteaser » Sat Feb 24, 2007 4:26 pm

Hi Loobie,

You've pitched things in a slightly different way and make some excellent points - thanks for your input.

Bob,

Thanks also for your comments. I put this thread in the Daily Life 'dungeon' because I didn't want it to become mixed up with 66's more immediate plea for help. There were plenty of others giving him sound advice. Also, the General Discussion board tends to move on fairly quickly and posts on the matter may have been lost.

Rather, I wanted to create a spot where people could come to from time to time and look at the more macro aspects of this subject in a reflective way.

Dignan,

Both you and Bromley said 6 months ago that MS would be history in 5 years and I am going to 'keep you honest' !! :wink: :wink: (one each).....the pressure's on!

Regards,
Phil
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Postby Lyon » Sat Feb 24, 2007 4:42 pm

Brainteaser wrote:Also, the General Discussion board tends to move on fairly quickly and posts on the matter may have been lost.
So true Phil, good point!
Bob
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Postby Fern » Wed Feb 28, 2007 1:21 pm

I sure hope most MSers reading your post won't adopt your doom and gloom approach. Before i respond to your points, please be assured you have my sympathies about the course of your MS, and the ebb and flow of your marriage.

Being single and well into my 40s now (and not a nun) i have long grappled with the dilemma of informing my BF about my MS. It's not something i rush into, but also not something i want to continue withholding forever, or as things look like they're getting serious. I mean, there are plenty of other challenges as a single person dating, and MS is just throwing a monkey wrench into it, but if the person is the decent, loving person you presumably believe them to be, then they'll take it in stride.

Altho being rejected becus of my MS has always been a fear of mine, it's never happened. My relationships have broken up for other reasons. But to sugggest wel all avoid romantic entanglements for an indefinite period of time is like saying don't expect to be happy, and don't live your life. MS is a reality and fact of life for us, but i wouldn't let it define everything i am, and by focusing exclusively on it, that's what you're doing. #3 is definitely a good idea, but again, to avoid having a family and depriving yourself of a nearly universal experience seems way excessive to me, and certainly not very encouraging to any newly diagnosed lurking round here. Life goes on despite MS, so don't put it on hold!
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Postby Lyon » Wed Feb 28, 2007 1:28 pm

Hi Fern,
It seems that you might be responding to several different posts....can you make it more clear who you are responding to and what they specifically said that you are responding to?
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