Saturday, September 10, 2011

It's been awhile

I have not blogged for quite a while. It seemed like I was going to explode if I didn't there when I just got started, but alas some of that drive has gone by the wayside as I try to get everything done in a day that I need to get done with a finite, and dwindling, amount of energy. C'est la vie. So now I don't focus constantly on whether or not my CCSVI procedure 'worked' or not. It's just realizing that while it may have helped a great deal, it didn't have the dramatic effect that it had on some. With almost 100% certainty, I can say that's because I'm a progressive case. The increase in some function I got was probably due to the fact that I was right there in the transition from relapsing to progressive when I had it done. Enough about that, it simply is what it is.

There are a couple of things I'm wrestling with right now. One is coming to the logical conclusion of where progression eventually leads you. Not just dealing with the nuts and bolts of having to adapt, but adapting to a mental state where I know what's coming, but not being interested in the slightest in dwelling on it. To coin a phrase I've used a lot in dealing with the mental strain of it, it serves no purpose. The other is trying to figure out what I'm going to attempt to do to try and be satisfied and content with the hand I've been dealt. That's a tricky fucker right there. I still, absolutely, like and want all the things I used to like in the past that gave me pleasure and satisfaction. It's just that I can hardly eek out any of them anymore. Was that because I lived too far in the physical world? I don't' think so even though I focused on that alot; it fed my soul the way reading does some people I guess. I think it's because our bodies and minds are one and when one is compromised, it profoundly affects the other. There's no question about the validity of that statement, but sometimes it sure seems like there's a separation, even if that's just a construct of academia. Well since you can't have one without the other in a living being, I just have to accept that you can't have a fully charged, unaffected by the physical, mental life when dealing with something like this. It just doesn't work that way.

So in dealing with number one, I've been getting fatigued badly before the day is done. Boo hoo I know when compared to many of my contemporaries that have crippling fatigue by 10am. But it is new to me. Not working has allowed me to be somewhat functional in terms of being a domestic engineer. I could get things like the laundry done during the day and cook dinner when my wife gets home from work. Granted those two things sometimes took all day to accomplish, but now I can hardly eat with out being nauseously dizzy after I cook. Or I can't clean the kitchen up and have to leave it for the morning. These are almost laughable to be upset about as I write them. But you have to understand it wasn't that long ago I was working 10 hours and then coming home and cooking dinner and interacting with the fam and all that and going to bed around 10:30. It just freakin' hurts so bad now I can't even physically get some things done as my legs just won't go another step. So what I talked about in the opening is the conclusion you come to when you think about it. I'm talking about becoming non ambulatory. Yes I am still on my feet and I still can do short trips to the store, go to the movies and things like that and for that I am VERY grateful considering I've had MS for 10 years now. But when you think where you were 5 years ago, where you are now, and what it will more than likely be like if I progress the next 5 like I have the last 5, that's when you can get scared.

No one wants to go into a wheelchair. And I'm really not scared of just that anymore. I used to be, but as I always say, the only 'good' thing about this disease is that it usually gives you plenty of time to prepare for stuff like that to happen; at least in my case. It's all the other shit that comes with it. We have regular cars. We have a regular house that's on the smallish side. We don't live in a plat with a flat yard. We don't have stair lifts. I still 100% take care of myself. All that shit will change, as some are all too aware, when you sit down for good. So all of the sudden you start to worry about money and all of that. But it really does screw up what good might happen today if you dwell on what may come. You see I really don't know if that's the inevitable conclusion of this. I've heard that over time MS can slow down. So maybe I will stay on my feet. I sure as hell won't be able to do many trips up and down the stairs if much more happens, but you stay upright as long as you can to be sure. So I'm reaching the same conclusion I ALWAYS reach in terms of progression. You just have to live one day at a time. Cliche I know but it's a cliche for a reason. And I'm am capable of living that way; MS has surely taught me that. But our fail safe motto is "prepare for the worst and hope for the best". Those are truly words to live by but I don't even want to prepare for that! But I have to and I have to find out what my options are if it happens. Not to dwell on, but just so it becomes an intellectual issue I'm prepared for if it happens and not an emotional one.

So, yes, my inevitable conclusion is that I am losing function in terms of endurance, energy and leg strength and may end up in a wheelchair. Those nerves just aren't firing fully and that's what it takes to keep your muscle mass up. No two ways about it really. When your legs have had enough by about noon, you know things are happening. But it is different than before when you'd have an attack and lose a bunch of function in a hurry. This is soooo different. Just a slow descent and you actually wax and wane and lose strength and build some back. But those are really games I play with myself. I get lazy in my exercise regimen and then get back into it and have a small bounce in function. Those are good things and even though the net effect is still loss, living a day at a time allows you to feel victorious even though it's just a head game. It is SO hard to stay motivated to exercise when you have to do it way past the point of pain just to get any benefit. And this is from a guy that would run on Xmas day in a blizzard when I was healthy. But throw in lots of pain and it's different. But I won't give up. It's hard to fight when you know you're not going to win. There's no getting past MS, there's no 'over it', there's no winning. At least not once you start to progress progressively :-). So the motivation that most sick people use, getting better and getting back to what you were, does not apply here. You have to really want to enjoy the diminished function that you are capable of having to even do it I suppose. It's a strange, unique dynamic and I've often verbalized it on here. I think I refer to it as 'exercising so things suck less'. Hard to stay motivated with that mind set year after year after year.

On to the tough one I'm dealing with. Not just what to do with yourself, but what life has to offer in terms of creating a new life for myself in this condition. The hard thing is that I still want and desire everything I always have. But, to be frank, most of that is out of reach. And it's not just the sports and that type of stuff. I mean yes I'm aging, but those who know me know that I was the middle aged guy that could 'hang with the young punks' in all things physical and even show them up. I've literally always been in great shape and would wake board all day long even when I was 5 years into this all and would stop only when I had to pee! But that really doesn't matter and only makes it harder to get over. I've always talked about the dangers of lamenting the past, but that's not where I'm at right now. I need to figure out what in life is going to interest me enough to where I WANT to get up in the morning and get started on it. Writing comes to mind, but shit, I just don't know how to get started. My friend in Washington, Mark who has already sat down, cooks and I simply love looking on Facebook at what he is going to make for dinner! He seems to really enjoy it and I suppose I could start that as a hobby. But really it just hurts to stand long enough to actually do some really cooking. I guess I'll have to use my Dr. stool and scoot around the kitchen.

I don't know, this post seems to have fizzled out as I'm writing it in terms of how much of my thoughts it has taken over. It sure feels a lot more 'grand' than it's coming across. But it is important, if you don't want to fall into the depression trap, to find something that trips your trigger. It just doesn't cut it just reading and watching TV and turning mushy. I don't hardly even turn the TV on during the day unless there is some good sport on. You'd think it would be easy to get over things you want to do that you can't anymore. It's kind of simple, you can't do it so get over it! But it's hard as the shows you watch, the people you're with, all do the things you want to do so since it's not an option to just check out of life, you just have to find your thing. So it sounds like I'm going to try cooking on for size. I've been learning, but not refining the craft whatsoever!

So the purpose of this blog remains the same. It allows me to verbalize what I internalize. It gets it out and shines a light on it and thus (in my mind anyway!) must be put into action. That's the approach anyone who deals with anything should try on for size. You can go to therapy all day long. You can psychoanalyze with a therapist until you're blue in the face. But until everyone knows about it and gets used to it (whatever it is) or doesn't, it's still there. I've come to the conclusion that, once again in my case anyway, I can't get over it until it's out in the open. Therapists are great for throwing you a lifeline I think, but to me, there's no substitute for just getting it out, hashing it out amongst friends and laughing about it later. That oh so socially profound movie Crocodile Dundee had a great line in it that says what I'm trying to say best. When trying to be sensitive to someone dealing with an issue the girl tells him she's seeing a shrink. He responds by saying "I didn't know she was nuts" to which his love interest in the movie explains how she's just working through some issues, to which he replies "hasn't she got any mates?". That's what it's like for me. If you're ashamed of a problem and you feel like you can only tell your therapist, it's still in the closet. You tell your friends and you've opened up. When it's still a secret, it's still a secret. And secrets are sources of shame if you dare not speak of them. But when you shine a light on them it usually turns out that most people thought it was no big deal anyway. And if they're appalled at whatever it was and simply can't be your friend anymore? Well then that's really how it should be since you don't want your friendship to be so fragile that if they knew this one thing about you they'd abandon you. So Lew's school of therapy says shine a light on the issue and it will either go away or diminish; it can't hurt you anymore once everyone knows!

Since I feel like I'm rambling, I'm going to close this post off. In the never ending pursuit of happiness that I'm on, I found a quote from that socially relevant giant, Charlie Chaplin. "To truly laugh, you must be able to take your pain and play with it". In other words, we all need to do a little bit of getting over ourselves.


  1. Nice Lew. I like your version of therapy. Sometimes the next "thing" will find you, so always keep your eyes open. In the meantime, all that cooking will make your family happy!
    Love, Rhonda

  2. "Writing comes to mind, but shit, I just don't know how to get started." You already did. And you did it well.

    Stupid disease.


  3. Sounds like you're still you, Lew! I miss all you guys, but I really don't miss doing the pharma studies. It was pretty disillusioning. Anyways, keep it up!

    - Lyle

  4. Hey Lew, I agree with your writing and talking philosophy. The act of having to put your random thoughts into actual words, always helps me. You write beautifully btw... keep up the good work!

  5. Nice post. You pretty much summed up most of my feelings. I am a little ahead of you, and fought the wheelchair for far too long. Once I got in, I found I could move around outside the house soooo much faster.

    It's really tough, as you pointed out, going from a person who could do anything physically (I never hired a mechanic, plumber, electrician, etc.) to being relegated to reading books and watching TV. It's a real punch in the gut to your sense of self worth.

    Hang in there (like you have any choice), and keep up the blog. It's always a pleasure to read.

    Sport (Steve)

  6. I have been going through similar thought processes as my body becomes a different beast than it has been in past. What that all entails and means to the over all person of ME, is the part I am still struggling to understand right now.

    This post of yours has helped me, I hope getting it all out on paper/text has helped you too in some way.

    I know this is late as a response sorry.

  7. I am shocked your doc has not suggested Campath, Cytoxan in Pulsed format, or a steroid regimen like mine. Damn it man, don't just roll over. My docs refuse to call any of the patients PPMS until they are waaaaaaay far gone because they don't want to screw a patient out of a trial or treatment insurance would cover but not if it was PPMS.

    Please dont listen to just this guy. Get a second opinion.

    Praying for you bro...Chris

  8. I am 48 and have been diagnosed with progressive MS since Apr 2010. I too went for healthy and active struggling to walk. I just wanted to say .. use the devices to help you. I walk with a cane because without a cane I can only walk short distances. I would rather remain active and use a cane than decrease my activity and not use one. The same goes for a wheelchair. When the time comes that a wheelchair is necessary to let me live my life than a wheelchair it is .. I will do as much as possible without it, but I will not sacrifice a trip or working in my lab or anything if I can do it using a wheelchair to save my legs and energy. These things are just tools to help us like glasses to help us see. So hang in there and use the tools we are lucky enough to have to their fullest extent!

  9. please keep writing! Seriously. Yours is the only ms blog worth reading.

  10. My name is George (not anonymous). I don't know why I came to your blog, I guess I just needed another perspective on life.

    Your blog inspired me, your fight has lifted me. Thank you Lew. I hope you keep fighting - one day at a time.

  11. Hi. Bit concerned as to why your last post was over 6 months ago. Have you heard of Professor Jelinek and his book Overcoming multiple sclerosis? If not, may i suggest you take a read of it. As part of managing your MS, i don't know if you tried to change your diet significantly. I could write more, but my main message is - please find and read that book.

  12. Lew
    What's happened? It's been more than a year since you've blogged? I hope you are doing Ok! Your Blogs have been inspirational and I like your writing style. I have a sister your age and a daughter 23, each with MS, and so know much of what you talk about. I don't get to your site often, but it has over time, always been an interesting read. Your perspective on and acceptance of your physical state at a point in time, generally has provided me with a sense of calm. I will miss that next read session! Take Care and 'Happy Cooking'.

  13. Hey Lew,
    This Is a Anne Brinker. I saw someone just made a post on November 9, 2012. Do you still read posts to your blog? If you do I would love to hear from you. I'm not doing too well myself.


I've figured out how to get everyone to be able to post on here.