Okay, seriously, something's got to give.

Anytime I feel as though I’m making some headway, I’m starting to feel better on a more consistent basis, wanting to go out and actually do things, and then I start to backslide. 

The numbness is coming back. I’ve noticed it starting up a little this past week, but it comes and goes. The more tired I am, the more pronounced the numbness is in my left hand. Last night I went out with some friends, and when I got home, the numbness was not only really pronounced in my left hand, it was starting up in my left forearm. Once again, I was tired, it was late... but it’s still there today. In addition to the numbness I’ve started stumbling more, running into things, and generally not feeling very coordinated. I’ve started inverting letters when I type, making more errors, typos, etc...

I’m not feeling very encouraged by this new series of events. I’ve not missed any dosages on my medication, I just don’t know what else to do. One of these days, things are going to even out.

Spring Cannot Come Soon Enough

I am so sick of winter, seriously, winter can end just about any time. Unfortunately, here in Colorado, we still have a few more weeks of ‘Spring’ snow storms coming and dumping all sorts of snow. What sucks even more is when we get one of these snow storms on the back of a nice, sunny, 70º day. I mean really, now we’re just getting rude.

This winter was my first with MS, and well… Is there a manager around because I’d like to lodge a complaint.

I learned this winter that my body doesn’t like sub freezing temperatures any more than it liked the super hot, sun scorching days we had in the summer. Go figure. Where the heat makes me feel like I’m moving around in pudding, and after any small action or movement, I have to go take a nap afterwards. The cold, on the other hand, makes my joints and muscles hurt and it’s just not fun being in my own skin.

What I want is spring. Just a few weeks were I don’t feel like someone is jabbing sharp things into my body, and right before getting up to use the bathroom is exhausting. In Colorado, spring generally is  only a few weeks, and I want them to start now so I can enjoy them while I can. Because, ‘round here, Mother Nature likes to play sick jokes and sometimes the snow keeps coming right up until May, then the thermostat switches the other way and starts baking.

*   *   *   *

This August will mark my one year anniversary being diagnosed with MS. Perhaps I should have a party, with cake… or maybe Guinness, lots and lots of Guinness, along with Jeremy’s black and tan brownies.

Mmmmm.... Black and tan brownies....

I wonder what’s for breakfast.

What some cheese with that whine?

I don’t like whining; I especially don’t like feelings as though all I do is whine about having MS. It sucks, we all know it, time to move on. However, every so often, a little bit of whining is good for you. When you have MS, it’s all about doing things that are good and beneficial for yourself. If people don’t like it… well I know of a bridge they can all go jump off of.

Today, I feel like bringing out a little whine. Keep in mind, you can’t just bring out any old whine. If your gonna whine, make it a good vintage full of body, with the hint of sarcasm and just a few top notes of snark. 

I have to say, when your actually feeling good for a change, nothing takes the air out of your tires faster than waking up to a handful of pills and an injection. I think that the hardest part of this whole longevity issue is the fact that in order to keep things in check, I have to continue to take medications; even on days when I feel okay. Nothing says that there’s something wrong with you more than the daily hoards of medications you have to take in order to be well or stay well. 

I tried throwing my hands up in the air, saying “Screw this, I’d rather deal with this on my own”, but the end result landed me in the hospital. It’s hard to say if it was my rebellion against my medication or the fact that I was severely taxed and stressed at my job that was the culprit; it could have easily been a combination of both. But, I once again have to wonder at the benefits of taking medications that, on a whole don’t seem to be working. The only thing keeping me going every morning when I face the line up of pill bottles is the fear of ending up back in the hospital. While I’ve gained back most of what was lost before, I still do not have sensitivity in the finger tips of my left hand and some in my right. What more could I lose if I have another major relapse? I suppose staying on the medication is supposed to prevent a relapse from happening, but what I wouldn’t give to not wake up to my reminder that I have MS, even if it was just for one day.

Enjoy the little things

Ever since I had to stop working after my relapse, I’ve become a hermit. I stay home most of the time, I rarely go out anymore. Now, all this is fine sometimes being a hermit isn’t a bad thing, but sometimes I’ve found it more difficult to get up the energy and desire to go out and do something fun.

For the longest time, even before I had to stop working, I’d wanted to have hot pink highlights in my hair. At nearly 33, you would think that I’d gotten all the silly, ‘lets dye my hair weird colors’, out of my system. Since being diagnoses with MS, and more recently having the relapse, it’s become more important to me to enjoy the little things and not let myself be held back by the perceptions of how a married 30-something mom of 2 should behave. 

You just have to be a little silly every now and again; it’s good for you.

So, I now have a head full of very bright pink hair, and to use a bad pun; I’m tickled pink. The funny thing is that the simple (okay maybe not THAT simple) process of dying my hair has perked me up. I don’t necessarily want to stay cooped up inside all day. No matter how much you can say that you do something  drastic (say dye your hair a color so bright you glow at night) just to entertain yourself; you really want to put it on display. 

Sometimes you have to do something just a little crazy to jolt you out of a rut. Life isn’t all about living in a cave.

Here Today, Gone Tomorrow

One of the things I hate about MS is how one day I could feel good, almost normal, and then by the next day I feel like crap. It’s one of the most annoying aspects of this crappy disease. 

For Example:

Yesterday I felt good, almost great, and it was nice. For the first time in a very long time, I didn’t wake up in the morning still feeling tired. I was able to work on my novel, some illustrations, and some freelance articles, in addition to doing the laundry and dishes. I was even up to cooking dinner. However, today is a totally different story as I feel yet another cold coming on, my muscles keep getting tighter and tighter, and I’m feeling pretty miserable over all.

Having MS feels like your imprisoned by your body. Yesterday I was allowed out after a long time of being shut up, given the opportunity to enjoy things, then today I’m shut back up in the prison. 

The key to surviving life with MS is to not take the good days for granted, because  you don’t know how long they’ll last or when you’ll have them again. However, it’s really hard when you get little teasers of what it feels like to feel well only to have them taken away once you’ve wetted your appetite. 

I’ve only had MS for less than a year, and I keep hearing about how things should eventually improve, and my good days will become more frequent and last longer;  but I’m starting to wonder if it’s ever going to happen for me. Seven months of not feeling well, is taking it’s toll. It’s hard to see the value of taking handfuls of pill every day, shooting myself up with meds, and going to therapies 2 to 4 times a week. There is no magic pill that takes away the symptoms and leaves me feeling good, but damn I wish there was because I’m starting to forget what it feels like not to feel crapy.