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.

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.

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.

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:

1.  Know where you are going and the kind of trail you will be on.
2. With no exception; every rock, tree root, and divot in the trail WILL try to trip you.
3. 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.
4. 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.
5. 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.
6. 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.
7. Leave your mopey, whiney, preteen at home. There’s only room enough on the trail for one complainer and you called dibs.
8. 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.
9. 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.
10. 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.
11. 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.

Yellowstone: A Week of Sightseeing, Critters, and Milestones

Last week my family and I went on a week long camping trip to Yellowstone National Park. We had started planning the trip back in December, and after my relapse in January, there was some concern as to whether or not I’d be able to go. However, I was excited to go and I wasn’t going to let what happened to me stop me from going on a trip I’d been looking forward to going.

As it turns out, going to Yellowstone was a great and much needed experience for me and for my recovery. The way my family and I travel is to go flat out and see and do as much as possible because going on a vacation is a luxury for us; Yellowstone was no exception.

Dragonfly. Taken on our hike.

On our first day in the park, I went on my first hiking trip; a one mile trek to see a potentially interesting site. My husband and kids were great, letting me set the pace. Being a photographer has it’s advantages because I would stop to photograph something and also give myself an excuse to stop and rest. We made it to the lake, which wasn’t as interesting as I’d hoped, but I was proud of myself for making it on our hike.

We saw this guy on our way back.

The rest of the week was like our first day. We’d go around checking out the sites, hike, and try to see as much as we possibly could see. My body took the activity well, which I found surprising. I started to realize that some of the limitations I’ve had were self imposed; I was too scared to push myself, scared of how I would feel, scared of the pain. 

There is still pain, but I think a part of it was the normal aches and pains of someone out of shape and not used to physical activity. There were MS related limitations, a major one being heat. Yellowstone’s weather was cool, consistently in the 60’s or 70’s; however body temperatures rise with activity and in high altitudes the sun beats down intensely. There were a few times when I was overcome by heat, and a couple of times I pushed myself to potentially dangerous levels.

This was taken at Mammoth Hot Springs.
This site was off the beaten path, and required a significant hike to reach

Still, I think this trip has started some wheels in motion that I can’t stop. I know now that I can’t use MS as an excuse for not being physically active, that I can and should exercise, and while I have to take heat into consideration, I can (with some strategies) work with that as well.

Yes, there will be pain...

Yes, there will be fatigue...

My body still cannot take continual strain and activity, I have to listen to by body and know when to stop; I will have to give myself time to rest.

I’ve already accepted that pain will always be apart of my life, and I’ve made the conscious decision to live with it and not allow it to get in the way of what I want to do in life.

Yellowstone was a fun week. I did push my body hard, maybe too hard, but all in all the whole trip was successful, fun, and it marked a new chapter in my life with MS. 

This picture is my favorite. The Grand Prismatic Pool. I climbed up the side of a hill, no path at all, to get this shot.

Oh, and the critters? We saw quite a few of those as well, including a moose that was something I really wanted to find and whose search facilitated a lot of the hikes we went on...

We met with success on our 'moose hunt' on the last day.
This gal we saw with her calf having breakfast.