Fighting my body

My body is majorly fighting getting back into running.

Its been fighting the running, and largely succeeding, but for the past couple of weeks I've been determined not to let it win and my body, more specifically the MS, is not happy. Last week, I fought and struggled to make it through one mile, which was hard because once upon a time one mile felt like cake. This week, I'm pushing farther and the MS is pushing back. On Monday, I got up to run and my calves were already beginning to cramp up. I'm stretching and I can tell I'm going to be in for a 'fun time' when I hit the pavement.

True to its word, once I started running, my body threw a full fledged MS style hissy fit. Not only did my legs cramp up painfully but my arms as well. Coming up on the one mile mark, my body really started complaining and it wasn't happy at all when I pushed it for another quarter mile before I switched to walking. This morning's run was a little better, despite adamantly not wanting to get out of bed... it was 31˚ outside. It accepted the mile somewhat graciously, it was okay with the extra quarter all though it started its usual complaining right before I reached the end of that stretch, but when I pushed it an extra quarter to make my total a grand mile and a half... the conniption fit started and my legs seized up excruciatingly.

I have to say I'd forgotten just how much of a fit the MS can raise when it doesn't like what I'm doing. The first time I started working out after my diagnosis, the left side of my body went numb for a month. This time it's not neuropathy, which is pretty easy to ignore once you get used to it, but painful muscle cramps and spasms which are less easy to ignore. It is really difficult to work up the motivation to engage in an activity when you know it's going to hurt... a lot.

So while the fatigue has lifted and it is now possible for me to get up at 5 in the morning, it takes a lot of will to drag myself out of bed and into my running gear. I know this will pass if I stay consistent, but it's going to be a long month of miserable runs before my body and the MS starts to accept that I'm the one in charge and I say I'm going to run.

Tysabri Infusion #2

Last week I had my second Tysabri infusion. A lot of people have been asking me if there has been any change or difference since I started treatment, and for the most part there hasn't been... Of course I've only been doing this for two months and from what I've been told it takes anywhere from three to six months for there to be a noticeable difference. However, that being said, I was realizing this week as I once again try to get back into a running routine that the mind numbing fatigue is finally starting to lift.

One of the hardest things trying to get back into running had been the complete inability to drag my sorry butt out of bed in the mornings. The desire was there, but the body and mind was so not willing and in the end won the struggle. It's a small thing, but noticeable this week when the alarm goes off at 5 am and I can actually move. Now it's 5 am, the sun isn't up and it's freezing outside, so I'm not leaping out of bed excited to freeze my tuckass off, but I can get going a lot easier. It's a step in the right direction.

Unfortunately, with the fatigue haze lifting, I'm discovering to my dismay how far back I went in my recovery. I got hit with a three ton load of bricks for a few months and it shows. In many ways it feels like I'm starting over. One small consolation in this is that if I hadn't made so many strides forwards before the relapse hit, when it finally lifted I'd be a lot worse off. It doesn't always help when I'm stumbling my way through the mile I'd conquered two years ago, but hopefully it will motivate me to get back to where I'd been.

Other benefits to the lifting haze, I've discovered that I have a brain! It's a nice brain, I've always been fond of it, I even have pictures of it... but for a really long time it went on vacation or something because it sure wasn't where it was supposed to be. With its return, hopefully well rested with lots of good pictures and stories to tell from its vacation, my ability to write has tagged along. As I prepare for my fifth trek into NaNoWriMo-land, I can actually feel that part of my brain flexing its tiny little muscles and I'm actually able to come up with and maintain a plot.

So, to make a long story short... two months in and there is a tiny little glimmer of hope that a medication is actually going to help.

ASD

So today I met with a group of ladies who all have a child or children on the autism spectrum. It's the first time I'd really connected with other people as a parent of children with autism, working as a behavior coach I always had to maintain a professional distance. Meeting with this group, I never realized how isolating it can feel to be a parent who's kids aren't 'normal'. It's just what we deal with, but it was really nice talking to others who have had some of the same issues from problems with the schools to dealing with shut downs and melt downs. 

I think that the biggest feeling I came away with is that I'm not crazy, especially when it comes to issues with the school. My children have needs that more often than not aren't being addressed, and with my youngest the school is refusing to acknowledge that he's even ASD except that it's plain as day to anyone who knows the spectrum and spends more than twenty minutes with him.

It's both heartening and disheartening to know that my family isn't alone in some of the experiences we've had; heartening because others have gone through it as well but at the same time the road we all face is long and hard and there's no end insight.

Over all it was a great experience, I even met a woman who's child goes to the same school as mine. She's also experiencing some of the same issues with said school. I see now that there is a fountain of information and support that I hadn't been aware of, and maybe this group can help sift through some of that and going forward have better services for my kids.

Some days I question the wisdom of leaving my job. Today really solidified that it was a good decision.

Hitting the road

This morning I went for my first run in many weeks.

As summer came to a close, I was hit hard by fatigue followed closely by a nasty virus that is still lingering.  Dealing with all that brought my workouts and running to a screeching halt, which as in turn brought on a pretty vicious cycle. Feeling like crap has made my motivation to go and workout non-existent, but not working out has brought on more MS symptoms like pain and spasticity which in turn decreases the motivation even more. It's a pretty hard cycle to break.

The run this morning went pretty well. Not spectacular or fast but not terrible either, I was able to go for two miles only having to stop and rest for half a mile. I just have to be mindful of not pushing too hard or too fast or else I risk crashing again. I'm hoping that with the Tysabri on board, I won't get as derailed by MS related issues as I got this summer but it takes time to build up the medication in my system.

In the meantime, I need to sign up for another race. Having a race on the calendar just seems to help focus my training because there is a specific purpose to the work. Registration for the Platte River Half-Marathon 2014 should be opening in November and I'm seriously concidering signing up again. It will be my third time running the race and my fifth half. My average completion time is about three hours, and this time I really want to shave it down to two and a half hours. I also want to be able to run the entire time without having to stop and walk portions, if I can run the entire half-marathon that would be a sign that I am ready to then tackle a full marathon. I just need to remain consistant and dedicated in my training, something has in the past been a struggle.

After my run today, I'm feeling pretty good. More energetic than I've been feeling lately. I wouldn't be surprised if my body throws up a few roadblocks over the next couple of days, the MS likes to do that when I start doing things differently. I just have to push through even when the motivation isn't there and know that if the MS rebels, it's only temporary.

Insanity prevails

Starting today the Health Care Marketplaces opened up across the country, these market places or exchanges were set up as apart of the Affordable Care Act, or Obamacare as it's more commonly known. Starting today, our Federal Government has shut down all because one side has decided to hold our nation hostage because of the ACA. 

I don't profess to know or understand all of the elements associated with the ACA, I'm sure that there are aspects that aren't so good just as I'm sure that all the negative aspects the opponents keep throwing out aren't as bad as they're made to seem. 

What I do know is that before the ACA went into law, someone like me stood to find themselves without medical coverage just because I have MS. It's not profitable for an insurance company to cover someone like me because they would actually have to spend money providing the coverage I would be paying for. The system as it's been, has always been set up so the rich and powerful get richer and more powerful while others suffer. Good or bad, the ACA levels the field a bit, and people like me with chronic illnesses have a chance to get the coverage that pays for the treatment we need.

And agree or disagree, our government shouldn't be shut down because of one side's refusal to accept that the ACA was signed into law.