This Is MS Multiple Sclerosis Community: Knowledge & Support

Excuse me for a moment guys, while I just adjust my halo and calm the blushing down. This thread has really made me think about where I am now and how I got here -- it certainly isn't to do with any amazing personal qualities of mine or any deliberate effort on my part, (and sorry, Bob, no magic substance either) -- I've been through every negative emotion in the book: despair, fury, self pity, frustration, depression, sadness and isolation to name just a few. Over the years I've been interested in things like comparative religion and I've read a few self-help books, but my reaction was always "What a load of rubbish! How could anyone possibly find anything good amongst all this shit? Even if you can see a few plus points, they are far, far outweighed by all the things I've lost or am in the process of losing".
Somehow, though, I found myself beginning to let go of all that yearning, all that wishing, and the constant anguish it brings. Don't get me wrong: in the back of my mind I still long for all those things and I know that my needs are all still there, ready to spring back into life at any moment, but for the time being they are safely locked away behind a solid door.
So without knowing it, and without knowing how it happened, I've done what all those self-help books and some of the religions tell you to do: I've let go... I've accepted... I might have even "handed my problems over to a god".
It's not a magic solution to our problems, and I'm not sure that anyone can actually choose the way they look at life, but in a nutshell I suppose I'm saying simply that I've come to terms with the way things are, and I can't waste energy on regret for what might have been. The little energy I've got is used up on hope for the future: the constant flow of research and opinion on this website makes me confident that yours, if perhaps not mine, will be a bright one.

Sorry for rambling on,
Dom.

hmm its a good question to say the least..has it made me a beter person...i dont know i think its changed my outlook on life and what to worry about and what not to worry about..i enjoy my time with friends and family even more then i did before..i guess it makes me look at stuff more and slow down to enjoy things more.....but a better person well i would think i was a okay person before but who knows...i just got a award for scouting for my service to youth..i guess it makes me more determaned to get kids and parents more involved with things like scouting...was totally shocked to get the award but when the person who nominated me said why i should get it...she said it was for still being there for the kids and familys even in times of sickness...never really thought of it as a sickness but i guess she was right..still embarressed about the whole thing..but was nice of them to think of me in that sense....so i guess it has just made me more determaned to do things for familys and kids....

chris

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waiting for answers

I think MS is a cruel cruel disease.
I think I would have perhaps learned lessons through aging anyway?

I would be so happy if I never had to hear MS said again, especially for two good friends of mine that are getting weaker and weaker from it at the moment, I wish I could give them some of their former lives back...for any of us.

See the positives in this situation requires a strength of character I don't think I posess, but I know if I ever find a more effective drug or even a cure, I will be a wiser, better person in spite of this illness. That's as close as I can come to a positive.

Often in my life something has happened to jolt me into the realisation that I should make the most of the opportunities I have. It used to only be a temporary thing with the lesson soon forgotten. MS is a totally different thing altogether. Altho i'm SPMS I'm stable and symptoms are fairly mild but they are there with me 24/7- from the moment I wake up to the time I go to sleep. They serve as a constant reminder to squeeze whatever I can out of every day. A friend described me as being "bolder" since my dx and After giving it some thought I had to agree. I definitely do more now rather than putting it off. That's not to say that every day is fantastic, just that I really appreciate the good things and people in my life now more than ever.
muu

First, congratulations Chris! Cast aside your embarrassment and modesty, sounds like you deserve the award and are a good representative of people with MS. Maybe because of your involvement one of those kids will grow up to be a researcher bent on curing MS.

DomEnico, I never doubted that you were human or assumed that it's been an easy ride but I did wonder how you maintained or developed your great attitude and you did a fine job of explaining. Thank you!

While I have your attention I'd like to take advantage of your "mature" wisdom

My wife has CIS or RR and in my year of involvement obviously the earliest stages have been my main focal point. With that in mind, I'm probably not going to word this question correctly but I think you'll understand my meaning.

Some of the later or more progressive phases of MS are considered unresponsive to treatment, or maybe it's more accurate to say that disability progression has been shown to continue despite treatment.

By the time I entered the picture this already seemed to be the common assumption. From your memory, at what point did researchers come to this assumption? Was it before the Campath/stem cell trial(s)? If it was before then, did it seem that that/those trials seemed to really "seal the deal"?

Bob

The thing I've got out of it is the realization that I have to do what I can to help myself deal with this illness, that there is no other real source of "official" help out there, temporally speaking, at least. My personal experience since my diagnosis has taught me "the medical community", whatever that is, can't help me. Not really. In fact, I've found an MS diagnosis has been an impediment to getting examinations and treatment for things that I know are unrelated to MS. A lot of people would consider that a negative lesson, but for me it has been a positive one, like having all illusions stripped away so I can finally chart my own course and explore other options. Instead of passively accepting what doctors and pharma pamphlets have told me, I research the medical literature and decide for myself what I am going to do. The Internet has made so much information available that people can access in their own homes and share. There is a lot of that going on here at this site. People here are charting their own way, and sharing their journey.

The US medical insurance system is a debacle, and going from one of those people with no real medical problems of note to a reject, all on the basis of a single diagnosis, has really opened my eyes to how I haven't been paying attention to a whole lot of things going on around me, and how a whole lot of people in my own country, presumably a wealthy one, have had to struggle. Then I broaden that out to the entire globe. It is like waking up to reality. It hasn't been fun, but I can't say I'd rather be ignorant.

Muu mentioned getting bolder with life. That is a great way of putting it. We are all having to explore different ways of being.

Lisa

Hi everyone,

Bob, I'm trying to summon up the most "mature wisdom", (grrr!!!), I can manage, but I'm not sure there was ever a single point where the assumption was made that progressive MS is a different entity, and less treatable, than relapsing MS. There is always an "accepted theory" of any disease until it is more fully understood, and over time that theory can slide across into new areas as understanding increases. This takes time though, and often many people stick with the "old" ideas while others latch on to every new theory that comes along -- I believe that's where we are now with MS: a flood of information and research available over the internet, some of it contradictory and mutually exclusive, some appearing to disprove the old ideas while others back them up . It's like trying to do a complex jigsaw: just when you think you're getting to grips with it, someone comes along and gives you an extra piece that you didn't have before, and which changes the whole picture.
When my mum was first diagnosed 30-odd years ago, MS seemed to be straightforward: it was one disease process with different stages; like any disease, it could be worse in some people than others, and could take an unpredictable course.
Then slowly, some new drugs began to tackle some stages of MS and therefore confirm some theories. But because they didn't tackle all the stages, and because of increasing knowledge, it became clear that there were different processes going on at different stages, or in different types, of MS. These were labelled as "harder to treat" because the pathways to things like, for example, degeneration, were only dimly understood, and also because it is easier to count the number of relapses than it is to quantify whether a continuous disease has changed its rate of progression.
Just to muddy the waters still further, the pendulum seems to be beginning to swing back -- recent research has shown underlying degeneration in all types of MS, which points back to the first idea that it's all one disease but your body's response dictates the different courses it can take -- as I put it to Manchester or Finn recently, "It's beginning to look as if we ALL have PPMS". Not exactly a definitive answer, I know, but it's the best this "mature" brain can come up with right now

Lisabee ,Don't give up on the medical community just yet: I know how you feel because I've had some pretty bad experiences myself... there are still far too many neurologists out there with that "there's nothing we can do" attitude. You've armed yourself with knowledge, but if you decide to consider prescription medication you'll at least need a doctor to provide it! I've also encountered the "MS spectacles" that some doctors see through -- whatever you present them with, be it headache, ingrowing toenails or being hit by a truck, they will dismiss it as a symptom of MS. Maybe someone living near you can point you in the direction of a more sympathetic doctor.

Muu... couldn't have put it better myself!

W W, don't get me wrong, I HATE this disease!

Chris: congratulations on your award! Sounds to me like you're a pretty damn fine person anyway... this is just proof that others see you that way too. My step dad used to tell me that MS only affected the best people... I rest my case!

Loobie: every word you say is completely understandable -- many people don't seem to appreciate just how f***ing FRIGHTENING it can be to have a disease like this. I can remember lying in bed years ago, in the still of night, with that cold chill of fear running like ice through my veins -- "what if I get so bad I can't scratch an itch, or pick my nose, or crochet toilet roll covers, (okay, maybe not the last one). Well, that's OK; you're supposed to feel like that, and it's people like you who take part in drug trials who will make sure that noses remain picked around the world in future,

I'd better go now before I take up ALL the bandwidth,

Dom.

Dom, just wanted to tell you that I found your March 20 post simultaneously inspiring and heartbreaking. Thank you for sharing your experiences.

Ditto.
I sit on the edge of my seat listening to Dom's words of wisdom like a younger sibling paying attention. It's a nice feeling to be in this virtual place, but at the same time I wish none of us found each other.

Another thing about Dom that I enjoy is the fact that he is still very cognitively adept.

Unless he is using a ghost writer, he makes me less concerned about losing my mind as the disease progresses.

Glad that you choose to join thisisms, Dom.

gwa

thank you for the nice words of compliment i never thougth of it in the sense of that one of the boys i am helping get involved with scouts might be the one yrs from now who might find the cause and a cure for ms..in that sense i am more then happy to do this and help the kids learn more about it...and hopefully look back and think i did do some good with the boys....i love these kinds of questions becuase ya see and feel what people are feeling and makes ya look not only at life but yourself even more..if that makes any sense...

chris

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waiting for answers

Hi Dom,
Considering you took that so badly I'm REALLY glad that I deleted most of what I'd originally written. It might have seemed rude of me to mention your having to wear thick soled boots when you were young because the earth hadn't really had much time to cool down yet! Thanks for the concise explanation Dom. Coming into the picture late, I wasn't sure of the chain of events but your explanation was kind of the way I'd envisioned. It all involves assumptions based on extremely uncertain "evidence". Not good enough to "take to the bank". Kind of like most MS "factoids". Hasn't ever, so never will. We've got to get away all those long held MS assumptions.

I've got to agree with the others young man. In the time since John Wayne and Roy Rogers died I've been in the market for a new hero. I admit that I wasn't really looking for someone in a wheelchair but it seems that I'm going to have to make an exception this time!

The only thing I ask....when I bring my friends over for autographs could you NOT mention that you crochet?

Bob

Yep, I understand exactly what you mean, we do all have PPMS in that sense, even with so called benign MS researchers are now finding that it is far from benign and the progression is just slower but still unrelenting.

I am beginning to detect a trend towards admittance that, at least in some benign cases (perhaps many cases), cognitive changes could be worse in some people with benign MS than in non -ambulatory people with ms. This has a lot to do with how the EDSS is weighted towards physical disability as the prima facie measurement of MS.

Has MS made me a better person? I can't really answer that in any profound way as up to now it has much less impact on my life than for many with MS.

I do tend to see the positives as much as possible. Mainly because whether I look at having MS positively or negatively it doesn't change the fact I have MS. So I would rather try to be 'happy' than miserable. However, I don't know how I would feel if I was in a worse position with this disease.

I guess though, that as with most things in life, you handle it and adjust in your own way, in your own time, making the best use of the resoures and strengths that you have available.

Much depends on what kind of resources and strengths you had before MS, whether you were a glass half full or half empty person or somewhere in between as the majority of us are.

People might not think they are handling an illness or life event that well and sometimes how we change is not detectable to us yet I do feel that, on the whole, unless there is underlying endogenous depression (and even then there are things that can moderate this), people will in their own way and own time find the positives. And there is no right or wrong way just what is right for you at the particular time.

It has made me more tolerant of human frailties in myself and others, it means I live more in the present, not thinking of the 'what ifs', or living in the future or regretting the past. And it means I don't put off what I need to do today until tomorrow.

It doesn't mean I am happy with having MS but I try to seperate it from whom I am and to see and give more weight and value to all the other good things in my life.

In some ways, how I look at MS or any event, good or bad in my life, always comes back to the Rudyard Kipling poem 'if' with apologies for its use of the male gender.

http://www.kipling.org.uk/poems_if.htm

I will stop rambling now.

Manchester

Whoa there... steady on, guys! I'm going to have to ask Aaron to lock this thread before my ego gets any bigger!
I never meant to sound like some kind of saintly guru, (although, come to think of it, that's not a bad idea: please send your donations and gifts like plasma TV's, high-spec laptops, and credit card details etc to...). I've probably just got an enormous black hole in my brain where the anger and bitternesss ought to be.

Ms makes heroes of ALL of us : those with the disease; families and friends who have to stand by giving their love and support while feeling helpless; and people like Wesley, who work day-in and day-out to try and fix our bodies -- they take some flak because of our understandable frustration and cynicism, but one day soon, they are going to be our best friends!

I don't think the outlook is relentlessly bleak for those of us who score more highly on the MS scale, either: There are some truly astonishing things on the horizon. And if you feel that, in comparison to some others you may hear about, your disability and symptoms are "minor" or "small", remember that you are more than justified in experiencing, and giving vent to, those negative feelings. The fact is that whatever is going on in your body , the fear is always the same , whether you've got a tingling little finger or you've become a head in a jar.

gwa: no ghost writer, I'm afraid: it's just little old me, chattering away into a microphone. Sometimes, if my carers haven't set it up, I have to bash the keyboard with my knuckle, so I can only manage a few words. I must admit I do feel as if my thought processes have slowed down a bit, but I think at least some of that might be due to a lack of stimulation and activity in my day-to-day life.

dignan and it'sjustme: I wish we didn't have to come here as well, (and I'm really sorry if I broke your heart), but in the meantime, well, maybe we can look on this community as just another a positive

Manchester: EXACTLY!:


Bob: just because the number of candles on my birthday cake is causing the polar ice caps to melt, there is no need to be personal! Yes, the earth was very hot when it was first made, but it's not surprising really... that was the busiest seven days of my life!!
And this whole crochet thing... that's just between the two of us, right? Nobody else must know.

Okay Aaron, you can bring the special padlock in now.

Dom.

DARN!! I wish I would have thought of that one!

Dom, you're my buddy and I'd never think of mentioning something like that in front of 3,158 other thisisms members!

Bob