Reaching the "tipping point"

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Reaching the "tipping point"

Postby Loobie » Sun Jul 22, 2007 9:40 am

What is that you ask? I have recently been wondering why in the hell a simple foot injury (a neuroma) would be having such a profound effect on my psyche. I have this foot problem that I probably got from working out (according to my DPM) and it has caused me to slow down and walk without putting weight on the ball of my right foot. It is temporary and I know it, but for some reason, it has thrown me into the worst funk I've had yet going through this. I am going to try and define it and see if others can relate.

My bag of symptoms that have to be managed are bladder, bowel, vertigo and eyes. Everything else like numbness and tingling and lack of coordination are nuisances, but don't need active management from me, they are just a pain in the ass. Trying to work and manage these symptoms has been, to this point, manageable. By that I mean I can scurry off to the head every 15 minutes and still do my job. I can use a glycerin suppossitory most days and still do my job. I can go for about an hour a day without seeing out of my left eye adn still perform my job. I can be dizzy most of the time and still do my job. With this new foot thing (even though it's not an MS symptom) I have reached a point where doing my job takes a major effort because I am so slowed down that I dare not get very far from a bathroom.

It's like I've been able to cope and stay sane while appearing pretty normal and with a minimal distraction level so I can focus on my tasks at hand. I told my wife that if I get one more permanent symptom that it is really going to take a toll on my energy level since it's all I can do to get through a day with my will intact as it is. The reason I'm writing this is that I never considered this dynamic. I am, at least for now, strugglling to find hope for the future. If this shit takes away my ability to make what I make, my family is in for some major changes. My wife is about a year from her RN and if I go down, she will have to go back to work and try and complete her RN. That will be very difficult for her. Nursing school these days is an absolute meat grinder.

I'm just struggling with how to keep this all from consuming my thoughts. Brain fog is bad enough, but when you throw on top of it the worry and anxiety of impending "doom and gloom", it just sucks. I'm just whining and would appreciate either a kick in the ass or some compassion. I don't know which I need worse, but feeling this way sure feels like self pity, and that doesn't do any of us any good. So for the immediate time it's MS -1, Lew - 0. I need to score a run and get even with this son of a b*&%$.

I just hate this f'ing disease.

Loob
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Postby TwistedHelix » Sun Jul 22, 2007 11:32 am

Hello Loobie,
I don't know if this counts as a kick up the arse or compassion,

but it sounds to me as if you've been struggling so hard to keep

going with everything you used to do that this foot problem has

become the final straw. It's so very hard to come to terms with

the fact that something may have to give, and so incredibly

annoying that it's always us who have to back down and not this

disease.
Maybe you need to think of it as a " tactical withdrawal": just

easing off on the pedal a little bit; cutting down on your

activity level just enough to give yourself a bit of a break. I

know that's frightening to do because, even if you stop doing

something temporarily; fully intending to get back to it as soon

as you feel able, there's always that nasty worry that you'll

never get back up to that level. It's that kind of uncertainty

which, unfortunately, comes bundled with this disease as part of

the package.
If you give yourself that break, your foot will heal and you'll

probably be able to keep on with your current life, but to be

honest it sounds as if you're only just getting through each day

as it is. You're carrying an enormous burden of responsibility

towards your family: adding psychological and emotional pressure

to yourself which will probably only make your MS symptoms worse.

Are you able to share it with anyone? We often feel that we

don't want to add to the concerns of the people we share our

lives with; especially those we feel responsible for, and if we

have always been the main provider it can feel like terrible

failure to say you can't be in that position any more.
It's not failure, and they won't be as burdened as you think they

will – concerned for you, yes, but I'm sure they already are.
I have always found that setting short term goals can be useful:

maybe think about slowing down until your foot gets better so

that you can carry on with your work, at least until your wife

completes her training, then see where you go from there.
I read an article recently about how we make decisions, and it

was talking about the thought processes we commonly go through:

weighing up the potential consequences for the future. Of

course, there is no choice in the matter when it comes to MS, but

I think our worries about the future are the same – the article

used as an example whether to accept a job offer which involves

relocation. Many people would swing between thinking this was

the opportunity of a lifetime or could be a complete disaster,

when in fact the chances are it will be neither: most things

aren't as good as we hope they'll be, and they are rarely as bad

as we dread. Our lives are already not as good as we hoped, and I

think that for most of us they will not be as bad as we fear.

Take care,
Dom
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Postby Lyon » Sun Jul 22, 2007 12:09 pm

When I hit the "send" button I didn't realize that Dom had already posted. That's a good post which contains truths pertinent to anyone, although admittedly more so for those with MS.

Hi Lew,
With it in mind that I don't have MS and have never personally experienced EXACTLY the situation you have.....I've always thought that those with MS still fit within the definition of "human".

What you are talking about sounds an awful lot like the human experience regarding "the straw that broke the camel's back". Sadly, people with MS get to experience the "straw that broke the camel's" back in an ongoing basis.

Sometimes it seems that the unending progressiveness of MS might be worse than suddenly having a heap of hopeless disability dumped on you all at once so that the decision to deal with it or end it all would be easier.

I can't imagine ANY sensible human who has gone through and continues to go through what you are NOT feeling exactly the same thoughts and feelings that you are.

Not that that helps at all.

I suppose at this point I might put on my cheerleading uniform and point out that in an otherwise seemingly hopeless situation you have chosen to enroll in one of the most promising clinical trials currently. Sure, at this exact moment you might not be benefitting and in fact seem to be declining but you do have reason for hope for the extension trial that you wouldn't otherwise have, maybe great hope. Nothing I can say would make this NOT a dark time for you but hopefully a year from now you will be able to view this particular moment as a time in which the dark clouds started clearing.
Bob
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Postby Grumpster » Sun Jul 22, 2007 2:35 pm

Lew,

It sounds like you and I have so much in common it is scary. My ON is wicked bad, balance sucks, tremor is fairly constant, etc. I am also at the tipping point with my ability to continue working, snd unfortunately it seems now that my marriage is also in question. The wife can not deal with the anxiety of the unknown it seems and I hardly blame her.

I do truely empathize with your situation and I surely hope that you can find the inner strength and fortitude to continue along so galantly as you have been thus far. I know the feeling that this may be the "big one" that causes you to stop being the financial pillar of the relaqtionship, to stop being the man that you are inside. It F-ing sucks really and and I will not tell you for one second that it does not. Someone out there needs to cure this wretched disease!!

I can only say that we only have today and tomorrow is not for sure. A bus could run us down tomorrow for all we know.

Life may not be the party that we expected, but we may as well dance while we are here. I hope that is not too cliche for you, but it has helped me whilst on the brink of some irreversible acts of which I will keep to myself.

I hope that this latest crapola will subside. You have sent some kind, inspiring words to me when I was at a real bad place and it helped. I am actually about to lose it just typing this post.

It would be great to have a face to face with people in the cyber group of this site. I can feel the energy here and there is a lot of good.

I wish you the best of luck with it all. Feel free to PM me if you like. Maybe a talk on the phone between those with so much in common would be therapeudic? I do not know, but I feel for you brother.



God bless.

G
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Postby Loobie » Sun Jul 22, 2007 4:08 pm

You guys are great. Thanks for the words. They have helped me today. As you can tell by the 'tone' of my post, it's been a tough day (two weeks). Dom, your insight, as usual, is spot on. One thing I wanted to tell you is that I do indeed have plenty of people that I can talk to. My wife is always there for me and she actually suggested I make a post. As we all know, no one but some else going through this can really relate; with the exception of Bob :wink: since he is so tireless in his research, he really is close to feeling what we go through. That's my belief anyway. My support structure of my wife, family and friends are as good as anyone could ever wish for, but I have only one other family member with MS. She uses a walker and is useless to talk to; she does not like to talk about MS. She is the world's best small talker, so if you want to gab about the weather, she's there for you, MS, not so much. That is why I spend so much time on here. Like I've said before, this is our AA.

I do feel like the straw that broke the camel's back is a good analogy. I have another podiatrist appt. tomorrow and if he tells me to stay off of it then I will do it. It's very hard for me to pull the trigger and miss any work. I already miss an entire day every other month (and soon again to be once a month when the extension starts) and I am one of those perfect attendance type of people that abhors missing work unless I have a bone sticking out. Other than the Avonex depression, this is the worst place I've been in the six years of dealing with this. Shortly after I went off of Avonex, it went away. I hope I can get out of this funk as well.

Bob, I am really in the need of something to look forward to. Thanks for pointing out to me about the upcoming extension. It's only four months for me now (end of Nov.), but it just seems like an eternity right now. It's amazing how I could have not keyed in on that, but that's just where my head is, so thank you. I've been so fixated on November it's almost funny to me to have to have that pointed out. It's crazy what obsessing on something will do to your thought process.

G, hang in there too. I wish you lived closer so you could come visit and we could have a beer or eight. We do sound so much alike with the exception of the marriage thing and I think about you often and how I would absolutely be lost with out my baby. That has to just suck. I was like you with the "pillar of strengh" role I traditionally played. Very physical; a big presence. I am learning how to change that slowly and I can't say I've come to grips with that at all yet, but it's not stinging so bad in regards to that as it used to. I am now officially six years removed from my last racquetball tournament that I played for Head racquet sports, and I am coming to peace with really missing my Sunday morning games and that type of stuff I had to give up. I used to love to get up on Sundays and drink some coffee and then go to the courts. I would get a real sense of calm and peace that my life was just like I planned. It really could not have been going better. But that has changed and how often do even normal people stay in the same place of true peace of mind for really long periods?

I really need to process my crap by shining a light on it and you guys just don't know how much I appreciate your honest words. I am grateful and blessed to have friends like you all.

Thanks,
Loobie Doobie
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Postby Lyon » Sun Jul 22, 2007 4:57 pm

Hi Lew,
For my part, it's a great honor to have you consider me a friend.

Grumpster, even my hellatious imagination can't imagine trying to keep a handle on everything else you're dealing with AND face a possibly failing marriage. My wife and I went through a bout of that about 15 years ago WITHOUT MS being a factor and................yup, in 52 years of living that was the darkest time in my life. Our kids were little at the time and some other guy raising them just wasn't something I could wrap my mind around. I wish you the smoothest ride possible through the rapids ahead.

Bob
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Postby TwistedHelix » Mon Jul 23, 2007 6:09 am

It's such a privilege to belong to a community like this: I can't

imagine what it must have been like to have MS before the

invention of the Internet, (actually, I can, because I did, but I

was still able to do other things back then).
Loobie, it sounds as if Bob has pointed you in the direction of a

small chink of light at the end of your personal tunnel. That is

brilliant, because so often with MS we turn around and around and

can't see any way out, and need someone else to point us in the

right direction. November will be here before you know it, and

if you can focus on that as well as concentrate on getting your

foot better, that might give you the purpose you need to get

through this time. I'm glad you have such a good support

network.
Grumpster: I'm so sorry to hear that so many things seem to be

going wrong for you at the moment – it never rains but it pours,

does it? I was wondering if your wife had ever considered finding

some support for herself? The person with MS is just the

epicentre, with radiating circles of concern, anxiety, and fears

spreading out to shake the people around us. Those closest to us

are hit the worst, and they can need support too. I wish

neurologists could appreciate what MS means to our lives: they

are so fixated on what MS IS, that I think they don't realise

what it DOES: in my experience, at any rate.

Apologies that my posts are double line spaced: I find it easier

to compose them in notepad, and when I cut and paste them it just

sort of happens.
Dom
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Postby Lyon » Mon Jul 23, 2007 1:02 pm

TwistedHelix wrote: I wish neurologists could appreciate what MS means to our lives: they are so fixated on what MS IS, that I think they don't realise
what it DOES: in my experience, at any rate.
Hi Dom,
I agree with what you're saying but I think that's a necessary impossibility. To keep their sanity I think it's necessary for neurologists to mentally separate themselves to a certain degree from their patients or they would "enjoy" the high suicide rates of emergency medical technicians, emergency room workers, policemen and firemen.

My first awareness that it would suck to be a neurologist was upon my wife's diagnosis. Despite the fact that my wife and I were in shock, I remember clearly that my wife's neurologist was crying when she told us and I remember thinking that it must be awful to have to break that kind of awful news to people day in and day out.

TwistedHelix wrote: Apologies that my posts are double line spaced: I find it easier to compose them in notepad, and when I cut and paste them it just sort of happens.
I thought you were being a respectful young whippersnapper with it in mind that old people with bad eyes (namely me) have to use reading glasses to read everyone else's posts.
Bob
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Postby finn » Tue Jul 24, 2007 7:42 am

Dom,

TwistedHelix wrote:Apologies that my posts are double line spaced: I find it easier

to compose them in notepad, and when I cut and paste them it just

sort of happens.

I like to use a text editor when composing posts, too. I have found WordPad better than Notepad, because it knows how to break lines inside the window where you're writing. You need to use "enter" only when you start a new paragraph.

It works. This post was written with it.

-finn
"The great tragedy of science - the slaying of a beautiful hypothesis by an ugly fact.” -Thomas Henry Huxley
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Postby TwistedHelix » Tue Jul 24, 2007 11:36 am

Hello there finn, and thanks for the advice. I have to write using speech recognition technology and for some reason it seems to recognise me better within some programs than others; this time I'm using wordpad to see if it makes any difference.

Hello Bob, ARE YOU ABLE TO READ THIS OKAY? I suppose I've had some pretty poor experiences with neurologists. The ones I have met have been cold, distant, unsympathetic, unemotional and apparently uncaring – and they were the good ones! When I was diagnosed there were no treatment options available for them to give me, so there was little they could say apart from, "don't get hot". I had had two years of symptoms and a week of tests, and because my symptoms were so similar to my mum's I'd already suspected MS. At the end of the week, the consultant came to me, surrounded by his coterie of students, and said, " so you think you might have MS?". I nodded meekly. " Well done! You've got it right!" He yelled in a delighted voice, as if I'd won a speedboat in a game show, and waltzed off with some pretty shocked looking students. The rest of them were like that too: dismissing any new research or therapies and unwilling to answer questions. More than once I was told, " you'll just have to live with it".
If any specialist had shown me the kind of concern and emotion that your wife's did, I think my jaw would have dropped to the floor.
You're right to say that professional detachment is necessary in that kind of job, but not at the expense of common human decency and empathy, surely?
I hope that nowadays, with more options to try, they are at least more open to discussion than mine were,
Dom
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Postby Lyon » Tue Jul 24, 2007 12:27 pm

Hi Dom,
I do need my reading glasses now but finn was right because the post looks great now.

TwistedHelix wrote:" Well done! You've got it right!" He yelled in a delighted voice, as if I'd won a speedboat in a game show, and waltzed off with some pretty shocked looking students. The rest of them were like that too: dismissing any new research or therapies and unwilling to answer questions.
My word! I suppose in this whole world I would assume that what you speak of happens on occasion but I'd never suspect quite so often.

In the last year and a half my wife has had personal contact with 4 neuros, the original diagnosing neuro, another at the university where we work who I suppose is her official neuro, the neuro in charge of the Michigan arm of the Tovaxin IIb and a neuro upstairs who is NOT involved in the Tovaxin clinical trial and did my wife's original EDSS. They've all been very personable.

In the last year and a half I've corresponded with......a multitude of research neurologists in several countries and they've all gone out of their way to be helpful and seem genuinely interested in my opinions.

Perhaps you should start wearing a lab coat and stethoscope and introducing yourself as Dr like I do......

Bob
(Dr of BS)
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Postby finn » Wed Jul 25, 2007 12:06 am

Dom,

I'm glad I could be of help. I always enjoy reading your posts, but to tell you the truth, the line spacing was a bit disturbing.

-finn
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Reaching the "tipping point"

Postby NHE » Wed Jul 25, 2007 5:01 am

TwistedHelix wrote:Apologies that my posts are double line spaced: I find it easier to compose them in notepad, and when I cut and paste them it just sort of happens.

As Finn suggested, Wordpad is a good alternative. Another is Metapad which works great as a replacement for Notepad when working with text files. Metapad also handles a lot more than just .txt.

http://www.liquidninja.com/metapad/

NHE
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