Saturday, March 27, 2010

captured that healthy feeling if only for a moment

And it was wonderful. No matter how many times I temper my expectations with reality, or even a little pessismism to not allow a big fall, it's clear that any chance at 'getting back' some of your healthy life is the utopian goal. And the only reason I say that is because those times you catch a glimpse of normal health, you can't help yourself. You have to keep your feet on the ground and be realistic, but we all want it no matter how content we are with stopping progression. Now for everone I imagine that's something different. For some people it would to be back working full time and being able to fully engage physically and mentally in whatever activity you want to pick. I had a morning today where I felt absolute peace of mind. Felt really good about the world, felt confident and all that stuff that I used to take for granted. MS is always in the way of that. If you're driving somewhere, you stress about is there going to be a good place to pee. If you're walking somewhere, you stress about being able to make it as far as you want to go. If you're just with people, you hope you have the energy to stay engaged and not start getting dizzy and confused and in pain. That's just how it is for many of us and it really gets in the way of finding your peace of mind and feelings of contentment and feeling just plain happy about being where you are and doing what you're doing.

This morning, and I think once again the exercise is starting to pay off, I captured some of that and I wish I could bottle it up, but also hope there's more to come so I won't have to! For me, one of those things that always made me feel all was right with the world were the weekend mornings. I've always been an early riser and I would spend lots of time focusing on things like exercising or taking all the kids to soccer or something like that. I used to get up at about 7:00am on Saturday or Sunday morning and go play a few hours of racquetball, or go for a good run or something and be done before noon and be fully awake and engaged and feeling wonderful. Well the MS has made it so I haven't had a day like that in I can't tell you how long. I still get up early, but by the time I have the coffee made and things like that, my legs are usually hurting so bad I'm not only not enjoying the morning, but I am definitely not thinking about going forward and doing anything else. It's just a trial to wake up and start moving forward and doing what you want to do.

This morning was awesome. I woke up and the sun was out and I didn't feel all that bad. Well I swing my legs out of bed and hmmmm, they aren't hurting that bad. Cool I think. They will be soon but Sarah has practice this morning and I'll go down and make the coffee and eggs and then find a seat because they are always hurting and I'm always a little dizzy at this point. It didn't happen this time. I just kept 'doing it'; standing the whole time pain free. I made the coffee, no leg pain. I made the eggs, no leg pain. I even had to go down the dreaded basement stairs to pump up her soccer ball. No problem. So then I decide I'm going to offer to be bus driver and collect all her friends and drive; I never do that. By the time I get her ready I usually just want to sit or lie back down. But today I didn't. I went and collected them all. We laughed and joked because I wasn't just thinking about getting back home and getting on the couch! So I dropped them off and sang at the top of my lungs on the way home to some Chili Peppers and just felt 'normal'.

It's that kind of stuff that means more than anything when you think about getting better. Just being able to live life happy and not constantly distracted by your challenges. To take care of myself in the background, but not be obsessed with taking care of myself to just have enough energy to enjoy SOME of the day. No matter how hard I say I'm OK with just not getting worse, and believe me I am; it beats the alternative, in the back of my mind I will always want to get 'better'. I think that's just human nature. Well this morning I did feel better. That's been a long time coming. So the next time you're driving down the street feeling good about life with a smile on your face, take some time and think about how lots of people can't do that anymore. For one second don't take it for granted. Just to be 'normal' is all we want. I don't care if I run the Boston Marathon. I just want to live life not constantly distracted. And, to me, without having done this procedure, I don't know if I'd have had a morning like this morning. So just being able to get up, feed my daughter and take her and her friends to practice a 1/2 hour away just made my flippin' year. Lowered expectations? I think not, feeling healthy is a beautiful thing, it's a gift. Try and make the most of your life if you have your health, you're selling yourself short if you don't. And the next time you are just doing something 'normal' and feeling irritated because something totally insignificant in the grand scheme didn't go your way, just look in the mirror and try and feel how wonderful it is that you have your health. Totally, totally cliche, but it's truly priceless, it really is.

I've put a picture of myself this morning on here because if you can go in public when it's 40 degrees out dressed liked that and still feel good, well then you are just feelin' it! Ha! I feel it's the boots that complete the ensemb', don't you?

Monday, March 22, 2010


I do believe a fair amount of homeostasis has been achieved in my illness. I say that because I simply feel the same and I really do know what to expect from day to day in terms of how much effort I am going to be able to expend and all kinds of stuff that I've now adapted to since things simply aren't changing that much. My buddy Mitch, who just had this done in Brooklyn, had this to say and it says what the progressive MS'er should expect from this perfectly:

"I feel the same as pre-surgery. If I can keep saying that for the next 40 years, I win."

I know I have pounded this point into the ground. It's as much to temper my expectations as it is to let everyone know that this isn't a panacea for MS. Every case is going to be different, and I personally believe much more will be revealed about the role that fixing this condition will play in recovery. I can't say what role that is because I don't know, but I do know that I pay attention to what people who just learn about this post on the internet and nobody will be able to say I'm a purveyor of anything but realistic expectations.

My legs still hurt and I have walking issues all day every day to varying degrees. But they aren't getting worse. They are just there like if I suffered an injury or something like that; an event if you will rather than a process of constant degrading. I've been exercising every other day now for almost 4 weeks. It's been a real mixed bag I'm sad to say as I had HOPED that I could work a bit and start to feel like some repair has taken place. Well I'm a tail of two halves, my upper half and my lower half.

My upper half is responding very well to working out. As those of you who follow this know, I had a pretty badly damaged spinal accessory nerve and it kept me from working out with my upper body for about 9 months. So I know things are working because I have better range of motion and in the 4 short weeks I've been doing it, I've been able to steadily increase the weight I use. This doesn't seem to be the case with my legs. I work them out with the same intensity as my upper body, but it's not having the same effect. I'm still using the same amount of weight as I was when I started; and the same amount of reps. I just don't seem to be building strength. It could just be that it's going to take longer, but I will report on that in a few months because I don't plan on stopping.

My theory about that is what it has always been. My nerves that control my legs are damaged. They are only capable of carrying so much signal because of that damage. And if you didn't know, if you aren't getting good nerve impulse to the muscle, you can't grow/build the muscles. BUT the whole shitty part of MS is that the signal is constantly worsening and that's why we just lose more and more function and muscle as the disease progresses. So if my nerves aren't constantly degrading, I should be able to maintain my current level of function, and maybe just maybe if I keep it up, I will get some strength back. That will be cool, but I don't need to be setting myself up by actually expecting that. I can still walk enough to work full time and be fairly social. I can't take any sightseeing tours or go to museums (unless of course I want to use a power chair, which I have done and will continue to do when needed) or sporting events, but BFD concerning that.

So even though my muscles in my legs don't seem to be building strength, this whole time of non disease activity has gained me some ability. I can take socks off and on while standing. I can dry my feet off without sitting down, and that's really been nice to feel so stable. It is going to be constant maintenance however for the rest of my life. One thing I have found out is that if I don't exercise my legs, they will get weak very fast. I mean every one's do, but this is a little different! So it is up to me to stay in the shape I'm in and I'm very grateful for that. I'll take that 100 times out of 100 when compared to getting weaker despite exercising; which was what was happening before.

On the other hand, it's awesome that I am able to build strength in my upper body. Waiting for that nerve to heal was a definite trial. For that to be done, ie the nerve is healed, is like winning the lottery. I had really thought in the back of my mind that maybe that wasn't going to heal right and I was going to be a tale of one, low functioning half!

So once again my post is kind of blah and boring as not much has changed. That seems to be a recurring theme and I'll just point to my pal Mitch's quote above. He said in one sentence what it's taken me volumes to articulate! It's been up and down of course (imagine that, just like "normal life") and there are times I get bummed about what I can't do. But to not keep adding to that list is wonderful. So yes I will need to stay on top of my exercise probably forever. But I was doing that in my life anyway. I worked out for 20 years when healthy without straying too far off the routine. So I can do this. I don't have as much energy to do it of course, but if I want to keep myself functioning as highly as I can, I just have to. This is still the best thing I've ever done for my MS and there isn't even anything on the radar as far as what's in second place.

So this post is only to let everyone know that my absence on here as of late is not due to something bad happening, it's just that not much is happening in terms of progression or static improvement. I feel like the improvements I've been feeling as of late are mostly due to the exercise. In other words, the disability I still have doesn't feel like 'active MS' anymore, it just feels like (hopefully) leftover damage. So hopefully I just keep boring you all to tears. Bad for laypeople reading this, but great news for anyone with MS!