They say first steps are the hardest... But sometimes you just have to jump in.

On Sunday I got back on my bike for the first time since I was diagnosed. Hobbes was driving me nuts and I figured the best way to appease him was to take him outside to ride bikes. I wasn’t sure how I would do, but I was willing to give it a shot. We ended up taking a bike tour around the neighborhood with Hobbes showing me where he likes to bike and where his friends live.

It felt good to bike again, and we had a lot of fun.

Today it’s warm and sunny out and I decided that I wanted to take a walk. I packed my iPod, sketch book, some pencils, writing journal, and a book. I went out, taking it slow, and after awhile I sat down to sketch. It was so great being outside in the sun, listening to music, and drawing. It almost felt like none of this MS stuff had happened.

I’ve come to the conclusion that I’m tired of talking about MS. 

I’m tired of talking about my health. Somedays are good, somedays are bad, on the good days I’m out and about while on the bad days I’m hibernating. When I feel good, I don’t like being reminded that I have something not right with me. Even coming off a bad episode, when I feel good I want to put the bad episodes behind me. 

I don’t want to look in the mirror anymore and see MS, and I don’t want people to only see that part of me as well. It’s like the nondescript music that plays in a department store; it’s there, you hear it, but it blends into the background and you forget that it’s even playing. I want MS to fade into the background; it’s there, I know it, but I want it to blend into my life. 

This song has been overplayed, and it’s has long worn out it’s interest. It’s time for MS to become the muzak in my life. 

This is the picture I sketched while on my walk.

Making a Comback

So, I’ve come to the conclusion that it is time for me to stop feeling sorry for myself and actually try and deal with the MS instead of letting it take over. For the past eight months, my life has been on hiatus. I’ve not done much, or wanted to do much, I’ve been holding myself back. 

Lately, I’ve started to become fed up with  myself. I’ve been sitting around waiting for something to change, waiting for the MS to settle down, but I’m starting to realize that I could potentially be waiting forever. Change doesn’t happen when you sit around and do nothing. The MS may go into remission or it may not, but sitting around waiting to see if it does doesn’t help anything. All I’m doing is wasting time, and if it isn’t going to go into remission what am I going to do, sit around and be miserable forever? The best thing I can do for myself it to make my body as strong as possible so it can last for as long as possible when/if the MS continues to progress.

So, I’m staging a comeback.

I’m not going to just sit around anymore feeling every ache and pain, wishing that it would just go away. I’m not going to stare forlornly at the array of prescription bottles, lamenting over the number of pills I have to take in a day... week... month. I’m going to have to get used to the lack of feeling in the fingers of my left hand; silver lining, I now have a barometer of how bad the MS gets. I may be verbally impaired but at least I’ll be amusing when I tell someone to wash their dishes in the microwave, or spew obscenities in order to jiggle out a word I lost. That’s just going to be apart of me, and people are just going to have to deal. It's time to start living again.

Empathy

It seems to me that a useful technological development, that has yet to be developed, would be a virtual reality simulator for doctors, giving them the opportunity to experience what their patients have to go through.

I get to go back to my neurologist this month, and as the appointment draws near, I’m feeling very anxious about seeing her. First of all, my symptoms haven’t stopped. The past few weeks I’ve had a lot of pain and discomfort, dizziness, fatigue, but when I tell her she’ll shrug it off as a natural part of having MS.

Well, thats great but it doesn’t change the fact that I’ve been in pain and will be in pain again until this stupid thing stops wreaking havoc through out my body.

I honestly believe that to specialize in one area of medicine or another, doctors should have to walk a day in a patient’s shoes. That way, they would have a little more empathy when a patient walks in and complains that their condition is causing major discomfort and, as a byproduct, upheaval in their lives. Doctors wouldn’t be able to dismiss the patient’s issues as easily.

Since most illness is internal, and outside of giving doctors cancer or diabetes or MS, a virtual reality program designed to simulate all of the symptoms and aspects of life a patient may go through, would be a helpful tool. There is a huge push to research diseases, find cures, develop better medicines, however there really isn’t a push to engender more empathy to the pain and suffering of the patient. 

New treatments are great, better medications are awesome, but the bioengineer or pharmaceutical rep or doctor aren’t going to be the ones taking said medications or treatment. Therefor, they won’t have to suffer the consequences or side effects. A doctor is like a general contemplating a battle strategy; they have to weigh the benefits against the deficits, and it there are more benefits to a course of action the deficits don’t really matter. But say that the patient who is made to feel sick by their medication. Sure, it’s supposed to help in the long run, but what about in the meantime? It’s it fair that life should stop because you’re waiting for the medication to do what ever it is it’s supposed to do?

Since there really isn’t a way to instantly get what you want, you do have to endure a certain amount of discomfort before achieving the desired outcome. This is where empathy on the part of your doctor comes in...

They may have to hurt you to help you, but they don’t have to be heartless bastards in order to treat you.

Living on an Island

Having MS, I often feel like I’m living on an island. When things are going alright, there’s a bridge from the island to the mainland. When things get bad, the bridge is swallowed up by the tide and I’m alone. Dealing with chronic pain is isolating, especially when the pain becomes constant. Unless someone has gone through something similar, there really isn’t anyway others can understand what it’s like. It’s not the pain so much that people cannot relate to, it’s the long road stretching ahead of you where this is life, this is something that will have to be dealt with forever. Somedays will be fine, hopefully the MS will settle down for a while, but ultimately the pain comes back, the achy feeling, the dizziness, the fatigue... it all comes back.

I’m coming up on my one year anniversary of being diagnosed with MS and honestly, I don’t know how I managed through one year, and I’m facing all of the other years yet to come. I know I will, manage, but in the grand scheme of things I’m still at the beginning. I’ve had a pretty rough time of it so far, and I still don’t know what’s yet to come, I don’t know if things will get easier or if there’s harder stuff I’ve yet to endure.

To be brutally truthful, I’m still very angry about what’s happened. I feel robbed, cheated out of a so called normal life. A part of me resents everyone else who doesn’t have this, who doesn’t have to deal with the drugs and the shots and the pain and so on. Because I know that most of the people around me take their good health for granted, it’s normal, it’s expected, our bodies are supposed to work. We only realize when our bodies don’t how good we had it before; I know I did. It’s hard accepting well wishes and sympathy because I can’t help but think that in the back of everyone’s mind, they’re saying “Thank God it’s not me.” And that’s what is so isolating, people cannot imagine a life debilitated by chronic illness, and they really don’t want to.

My therapist asked me today, what would I rather people say to me instead of expressing sympathy, and I honestly didn’t know. I suppose nothing, a silent acknowledgment that it sucks to be me, but there’s really nothing that can be done, so what is there left to say. I suppose what I need is for other people to accept that there is nothing that can be done, and not feel as though there is something they should do. This is life, it’s my life, my burden to bear, and it’s something that I have to bear on my own. I alone have to figure out what this means for me and how I’m going to live with it. Expressions of anger, sadness, pain are not meant to garner sympathy but are the only way I can let out what I’m dealing with. It’s something that for me, I have to express in some way so I can analyze it, mold it around, try to glean some sort of understanding.

Sometimes I feel as though I have a handle on things, I’ve compartmentalized MS as just another part of my over all make-up. Then it rears it’s ugly head and I am reminded that it’s not as easy as one might think to package it up and fit it in somewhere. I’m still not over the shock, I still haven’t entirely accepted that it’s real. I just want to push it aside and forget about it, but it won’t allow it’s self to be forgotten.