Since coming to terms with having MS, I've been... appreciating my mobility. For many people with MS, mobility is something that slowly deteriorates as the condition progresses; if your nerves aren't working right they can't send all the correct signals that make your body function as it should.
If you don't use it, you lose it... and as hard as it was to get going, I see how important it has been that I've gotten my activity levels up and how keeping those levels high can play a key role is staving off mobility loss in the future. The stronger hold I get over my body, the harder it will be to lose control of it... at least thats what I've been telling myself.
Which brings me to my latest... adventure.
The more active I've become that more active I want to get, and the more I want to challenge myself. Five years ago, WAY before I was diagnosed or even thought there was a possibility I would every have MS, I registered to do the 50 mile, two day, walk into D.C. I worked hard and trained to do the walk however I fell short of my fundraising requirements and was unable to participate.
The irony isn't lost on me...
Coming up in June there is a Bike MS challenge. The challenge is to ride either two-days/150 miles or one day/40 miles and I had been thinking for a while that if I could get myself into good physical condition that I should try and tackle one of those rides. Initially I was thinking of trying it out next year but I have since been compelled to push myself to make a run of it this year, opting for the one day/40 mile ride.
The goal of the challenge is to raise awareness and money for MS and that, in and of itself, is a worthy feat. However, for me, this ride is something way more important. One of the worst things about having MS is feeling helpless. You're at the mercy of your own body and whether or not it's going to cooperate, and there isn't anything you can really do to fight. Riding this challenge, for me, is my way of combating MS. It feels like I'm doing more than just living one day at a time, that I'm contributing... something.
So, I'm signed up to ride provided that I can meet my fundraising goal this time around. I have good reason to believe that I will and it isn't just the increased motivation of having MS...
When I posted on Facebook my idea to train and ride in Bike MS I was greeted by overwhelming support; everyone was cheering me on and encouraging me to sign up and go for it. What surprised me and touched me the most were my co-workers who... without prompting... asked if they could join me and form a team and help support me on the ride.
Outside of family, I don't think I have ever felt so supported. I am so blessed that I work with such an amazing team of people and I know that with their help and the help of my family I'm going to not only be able to meet this challenge... I will concur it and will have done my part, as small as it maybe, towards finding a cure.
Anyone who would like to contribute towards my ride can do so at:
My Bike MS page
Tuesday, April 19, 2011
Wednesday, March 23, 2011
Getting Busy Living
When I was diagnosed with MS almost two years ago I spent a lot of time feeling very sorry for myself. I felt like life as I knew it was over and all I was in for was slowing becoming disabled. However, a series of events unfolded over the past year that started changing my perspective.
The biggest event was when I ended up in the hospital last winter and had the very real concern that I would be disabled; losing the feeling in my hands, unable to go back to my job. That was a really hard time for me, because I didn't know what I was going to do. I couldn't go on disability, I had a finite period of time where I was still getting paid by the school and then unemployment which would pay next to nothing. I had to think about what I wanted to do from that point on; find my new place in the world.
So, I dyed my hair pink and set off to find... myself and amazingly enough I found it back in the school district that I had left when I relapsed. I went to work for a school who's programing I believed in 100% working with amazing kids, where I am apart of a team where my voice and my thoughts actually matter. My work is hard and stressful but rewarding, I get to work with the best group of people I've ever worked with, and... I get to keep my pink hair!
For years I've believed that everything happens for a reason. Good or bad, there is a purpose to the events that happen in your life; even if that purpose isn't known right away. I could go through a litany of event that brought me to where I am now, but I think that it's kind of obvious if you really think about it.
I started this blog to write about what it was like living with MS, but what it became more about whining about having MS than living. Over the past six months I stopped whining and really started living; which explains the significant gap between this post and the last.
Just recently, I had an experience where there was a strong likely hood that I was going to have be in difficult position where I wasn't comfortable nor felt qualified to be in. I remember feeling a rush of panic at the idea but right after the panic I felt calm. In that moment I'd accepted that if it came down to it, I'd step up and take the reins no matter how hard it was going to be because that was what had to be done. Fortunately, I didn't have to be put into that situation, but it reminded me of other times I was put in almost impossible situations.
Its sad to say, but I've been through a lot worse than being diagnosed with MS and every time I pulled through, no matter how difficult or impossible things felt at the time. Looking back, I couldn't say how I managed to pull through because I'm not in those moments anymore, I can only say that I hunkered down and did what had to be done going one day at a time because that was the only thing I could do. It occurs to me that I'd forgotten about that part of myself; the part that pushes through no matter how hard things get.
I spent a year and a half being angry and depressed about the diagnosis and during that time I was sinking. I think going into the hospital showed me what my future was going to be like if I stayed in that 'pour me' mindset and I didn't like what I saw. So, I started to fight back more productively, and little by little I started taking back what MS was stealing away.
At the start of this year I started taking more drastic steps in my determination not to cede any more ground to this condition. I'd gotten back everything I'd lost the previous year but it was time to step it up a few notices starting with my weight. I joined Weight Watchers, began working out, and started losing weight. Initially, the MS rebelled and tried throwing up blocks against the changes I was making but I pushed through and have gotten to a point where I have almost no symptoms of MS at all. I've lost 30 pounds so far and I have been more active in the past three months that I'd been in years.
Its taken nearly two years but I am finally living with MS... or more accurately, MS is living with me because I'm going to be the one calling all the shots in this relationship.
The biggest event was when I ended up in the hospital last winter and had the very real concern that I would be disabled; losing the feeling in my hands, unable to go back to my job. That was a really hard time for me, because I didn't know what I was going to do. I couldn't go on disability, I had a finite period of time where I was still getting paid by the school and then unemployment which would pay next to nothing. I had to think about what I wanted to do from that point on; find my new place in the world.
So, I dyed my hair pink and set off to find... myself and amazingly enough I found it back in the school district that I had left when I relapsed. I went to work for a school who's programing I believed in 100% working with amazing kids, where I am apart of a team where my voice and my thoughts actually matter. My work is hard and stressful but rewarding, I get to work with the best group of people I've ever worked with, and... I get to keep my pink hair!
For years I've believed that everything happens for a reason. Good or bad, there is a purpose to the events that happen in your life; even if that purpose isn't known right away. I could go through a litany of event that brought me to where I am now, but I think that it's kind of obvious if you really think about it.
I started this blog to write about what it was like living with MS, but what it became more about whining about having MS than living. Over the past six months I stopped whining and really started living; which explains the significant gap between this post and the last.
Just recently, I had an experience where there was a strong likely hood that I was going to have be in difficult position where I wasn't comfortable nor felt qualified to be in. I remember feeling a rush of panic at the idea but right after the panic I felt calm. In that moment I'd accepted that if it came down to it, I'd step up and take the reins no matter how hard it was going to be because that was what had to be done. Fortunately, I didn't have to be put into that situation, but it reminded me of other times I was put in almost impossible situations.
Its sad to say, but I've been through a lot worse than being diagnosed with MS and every time I pulled through, no matter how difficult or impossible things felt at the time. Looking back, I couldn't say how I managed to pull through because I'm not in those moments anymore, I can only say that I hunkered down and did what had to be done going one day at a time because that was the only thing I could do. It occurs to me that I'd forgotten about that part of myself; the part that pushes through no matter how hard things get.
I spent a year and a half being angry and depressed about the diagnosis and during that time I was sinking. I think going into the hospital showed me what my future was going to be like if I stayed in that 'pour me' mindset and I didn't like what I saw. So, I started to fight back more productively, and little by little I started taking back what MS was stealing away.
At the start of this year I started taking more drastic steps in my determination not to cede any more ground to this condition. I'd gotten back everything I'd lost the previous year but it was time to step it up a few notices starting with my weight. I joined Weight Watchers, began working out, and started losing weight. Initially, the MS rebelled and tried throwing up blocks against the changes I was making but I pushed through and have gotten to a point where I have almost no symptoms of MS at all. I've lost 30 pounds so far and I have been more active in the past three months that I'd been in years.
Its taken nearly two years but I am finally living with MS... or more accurately, MS is living with me because I'm going to be the one calling all the shots in this relationship.
Monday, September 20, 2010
Proving Myself
Going back to work has been the best thing I could have done. It means that I'm not letting MS win and take over my life; even though I have to deal with more unpleasant symptoms. One thing I've noticed about working with MS, I feel though I work twice as hard as I did before I was diagnosed.
I think that it can be easy for people to assume that you are limited by your disability; sometimes they go out their way to do things for you, or just think you aren't able to do the same things they can. What most people don't know is that when you have a disability, you tend to work harder to prove to the people around you and even to yourself that you aren't limited by your condition.
Even though I have MS, I don't want to be just someone with MS. It's hard sometimes, when I start to hurt or I'm really tired, to admit that I'm feeling weakness due to MS. It's hard because I don't want the people I work with to worry that I'm making myself sick by working too hard, or the work is too much for me. A lot the time I try to bear the brunt of what I'm feeling so I don't worry the people around me.
I know that I don't have to push myself as hard as I do to prove myself to my coworkers, but it feels as though I still need to prove myself to myself.
I think that it can be easy for people to assume that you are limited by your disability; sometimes they go out their way to do things for you, or just think you aren't able to do the same things they can. What most people don't know is that when you have a disability, you tend to work harder to prove to the people around you and even to yourself that you aren't limited by your condition.
Even though I have MS, I don't want to be just someone with MS. It's hard sometimes, when I start to hurt or I'm really tired, to admit that I'm feeling weakness due to MS. It's hard because I don't want the people I work with to worry that I'm making myself sick by working too hard, or the work is too much for me. A lot the time I try to bear the brunt of what I'm feeling so I don't worry the people around me.
I know that I don't have to push myself as hard as I do to prove myself to my coworkers, but it feels as though I still need to prove myself to myself.
Sunday, August 29, 2010
Medication
Before MS, I rarely saw a doctor or took medication of any kind. In fact, it was telling about how bad I was feeling if I took so much as an Advil for a headache. Now, however, I've taken more medication in one year than I think I've taken my entire life.
That is one of the hardest things about having a chronic condition, the medication. You take it because you know that it's supposed to help, even if you can't see or feel the benefits; but at the same time its a constant reminder that you're sick even when you're not feeling bad.
Every time I reorder my Copaxone, which is the disease modifying drug, I'm asked if I ever stop taking it if I feel better. I always answer the same way, "No", but honestly the better I start to feel the harder it becomes to want to take the medication.
For one thing, it's an injection, there is absolutely nothing pleasant about having to stick a needle into yourself every day.
Secondly, the fricken shots hurt! I can give myself the injection fine, but the site reactions that occur right after the shot is administered can be downright painful. Not only that, if I don't do it just right I'm left with all kinds of bruises that last weeks at a time.
So yes, I do struggle to take my medication when I feel better, but I challenge anyone to fine someone who doesn't.
Try as I might to push MS to the back of my mind, and more often than not I'm successful, but every time I open a bottle of pills or prep myself for an injection, the reasons why make themselves known front and center in my mind.
Last year I said "screw it" and stopped taking everything, a few months later I was in the hospital. Was it because I stopped taking my meds? Or was it because I was over stressed, run down, and still reeling from the diagnosis?
The world may never know.
Apart of me, once again, wants to say "screw it what am I really gaining from all of this anyway?" I just want to lead a normal life that doesn't include having to shoot up every day or take enough medication to stock a pharmacy. The only thing that stops me from quitting the drugs is the memory of ending up in the hospital while they pushed this medication that made me feel like shit but was supposed to boost the good parts of my immune system that wasn't attacking my nerves.
I just can't see how it's possible to completely push the fact that I have MS to the back of my mind when I have a daily reminder that it's there.
Of all the aspects of this condition I've come to accept, the medication piece is still the hardest for me to completely come to terms with.
That is one of the hardest things about having a chronic condition, the medication. You take it because you know that it's supposed to help, even if you can't see or feel the benefits; but at the same time its a constant reminder that you're sick even when you're not feeling bad.
Every time I reorder my Copaxone, which is the disease modifying drug, I'm asked if I ever stop taking it if I feel better. I always answer the same way, "No", but honestly the better I start to feel the harder it becomes to want to take the medication.
For one thing, it's an injection, there is absolutely nothing pleasant about having to stick a needle into yourself every day.
Secondly, the fricken shots hurt! I can give myself the injection fine, but the site reactions that occur right after the shot is administered can be downright painful. Not only that, if I don't do it just right I'm left with all kinds of bruises that last weeks at a time.
So yes, I do struggle to take my medication when I feel better, but I challenge anyone to fine someone who doesn't.
Try as I might to push MS to the back of my mind, and more often than not I'm successful, but every time I open a bottle of pills or prep myself for an injection, the reasons why make themselves known front and center in my mind.
Last year I said "screw it" and stopped taking everything, a few months later I was in the hospital. Was it because I stopped taking my meds? Or was it because I was over stressed, run down, and still reeling from the diagnosis?
The world may never know.
Apart of me, once again, wants to say "screw it what am I really gaining from all of this anyway?" I just want to lead a normal life that doesn't include having to shoot up every day or take enough medication to stock a pharmacy. The only thing that stops me from quitting the drugs is the memory of ending up in the hospital while they pushed this medication that made me feel like shit but was supposed to boost the good parts of my immune system that wasn't attacking my nerves.
I just can't see how it's possible to completely push the fact that I have MS to the back of my mind when I have a daily reminder that it's there.
Of all the aspects of this condition I've come to accept, the medication piece is still the hardest for me to completely come to terms with.
Monday, August 2, 2010
Hiking with MS
So, after my sojourn to Yellowstone the other week, I cannot go back to not doing active things because I’m tired, or I hurt, or anything like that; once you’ve spent an entire week camping and hiking you kinda lose the “I have MS” excuse for getting out of activities.
This is good, it means that now I’m home, I can’t revert back to the way things had been for the past year.
That being said, I have a few thoughts on going hiking with MS:
- Know where you are going and the kind of trail you will be on.
- With no exception; every rock, tree root, and divot in the trail WILL try to trip you.
- The wildlife you were so eager to try and see will only come out while you are watching your feet for the aforementioned rock, root, and divot. The moment you look up, they mysteriously vanish.
- Pick the right shoes. This goes way beyond the whole ‘shoe fetish’ issue; any real hiker will say the same thing. However with MS, the wrong shoes can mean the difference between being stiff the next day or completely unable to walk.
- Don’t let the slightly chilly, overcast day fool you; the moment you hit that first steep incline, I don’t care if it’s snowing, you will get overheated.
- It doesn’t matter how great your big, heavy, ultra professional digital camera is or how it takes fantastic, high resolution, pictures; after 7 miles it’s like carrying a 5 pound dumbbell on your shoulder. Next time, opt for the smaller, less professional, camera; it’s not like you’re going to actually get to see any wildlife staring at your feet.
- Leave your mopey, whiney, preteen at home. There’s only room enough on the trail for one complainer and you called dibs.
- Pick a trail that takes you uphill at the beginning of the hike. That way, as you head back, you’ll have gravity helping to propel you forward.
- You’re not as spry as you used to be; just because your son was able to nimbly negotiate a mud bog without falling in doesn’t mean you can too.
- When you get home, call dibs on the first hot bath/shower. Sure everyone else is tired, dirty and sore, but they weren’t the ones who mistakenly wore the wrong shoes or foolishly tried to follow their kid through the mud.
- Finally, while soaking in the tub, and using up the hot water, mentally curse the trail guide you purchased the other day. There really needs to be a guide book that has a 'fat bastard section' rating trails based on how an out of shape, overweight, individual with MS would do on a hike.
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