Wednesday, October 1, 2008

It's hard

I am having a hard time facing the realization that I have MS. I am very blessed to not be having any symptoms right now (I'll be getting my blurry vision checked soon.) but that is what makes it hard for me to understand that there is something wrong. I have mentioned it before but I really hate Monday, Wednesday and Friday's because of my shots. It's just such a strong reminder that I am not normal. I pray that these shots do what they are suppose to. I pray that I will always be as physically strong as I am now or stronger. I pray that I will mentally be okay. I pray that someday there will be a miracle and when I get my MRI I will be that miracle patient whose MS has just vanished.




The shots do seem to be a reminder that we have this thing living inside. I've known of folks who look at the injections as a way to empower themselves and do something for the future.

It does take a while before MS and the shots begin to feel 'normal', but it does happen. Keep expressing your feelings and seeking support. It gets easier.

Bald Ben said...


I stumbled upon your blog here and have been reading your thoughts. I too am relatively new to the MS blogging community, but have found it to be amazingly powerful, far more than I had ever anticipated.

While I am a man, I have to say I sympathize with many of your parenting issues. I was diagnosed in March of 2005 and last Oct 12th my wife gave birth to our twin boys. As I have been known to say, proof of God and He has a dark sense of humor….

While it is the greatest thing that has ever happened to me, I often times feel very inadequate. I feel as if I might not be holding up my end of the bargain. Early morning feedings, midnight wakings, etc. often times fall on my wife’s shoulders because I can't trust my hands or I am just so exhausted. Conversely, my wife will need a little R&R (which is understandable) and on some occasions I feel taken advantage of. It's a no win situation sometimes. While I realize it is easier said than done, I find the only way to avoid trouble is to keep the lines of communication wide open. (I should take my own advice, as this morning found me ready to loose it. That’s another story.)

Acceptance of the disease is a much larger issue, but for me it was almost a blessing. I had so many mysterious illnesses over the years and no answers, that when the news of MS came down the line it was almost a relief. I had a face to the monster. Now I needed to figure out how I fight it. It isn’t easy, I suppose it never will be, but I find keeping things in perspective is the only way to keep a bead of sanity.

Everyone has some sort of problem, albeit MS, Cancer, ALS, Migraine, Asthma, or simply a stubbed toe. All of these things hurt in one way or another. Imagine that moment of slamming your toe into the chair. It is the worst pain you ever felt, at least for that split second. I try (try is the key word here) I try to remember that no matter how bad it is for me, there is always someone out there who is a little worse off. I don’t take pleasure in that, I try to humble myself with that thought. It doesn’t always work, but be thankful for the amazing things you do have. Not to be trite, I realize platitudes may not be what you are looking for. I know I never am. Yet here we are. None of us asked for this, I don’t believe that if any of us were given the option of leaving MS behind that we would think twice, but we don’t have those luxuries. It can be terribly depressing, but I try to laugh as often as I can.

Look at your boy and see what he sees. What we see as so mundane and common, is brand new to him. The most average thing sparks the deepest sense of wonder in him, as it does with my boys. This is the greatest gift I could have been given: to be able to see the world anew, despite the way my hands might be tied. Be well. Take a look at my blog if you get a chance.

Bald Ben

P.S. Sorry this is kinda long...Economy of words is not my strong suit.

Tori said...

You have a warrior's spirit and miracles do happen, so continue believing in the power of healing.