I've been struggling with how to write this particular entry for a while. Describing my own experiences is one of the things I find very troublesome about this disease. It's actually quite difficult sometimes to express what's going on without causing alarm, but also without minimizing it too much. I feel like sometimes stating what's going on comes across as complaining. I hate feeling like Debbie Downer. I'm sure this is all in my head because I have the absolute best support group in my family and friends. But I really hate it. I hate that I'm suffering but even more, I hate that the people who love me know I'm suffering. It gets really old. I get sick to death of saying the same things over and over. I don't want to think about it. I don't want to be a bother or cause anyone concern. I just want to be me, not MS.
The internet can be a great resource, but some of the things I want to know just aren't out there. Since being diagnosed one of my biggest questions has been "what can I expect?" I've read WebMd (very useful) and National MS Society (useful as well) and I've talked to my doctors and even a few people who have MS too. But it's such a bizarre disease. The symptoms can vary greatly from one person to another and even from one day to the next with the same person. It's like asking someone what a sunset is like. It varies! Only time will tell.
So, after reading about what MS is, I was sufficiently freaked out. OMG! I'm going to need diapers?! I'm only 34. That does not work for me. What?! I'm going to go blind in one or both eyes?! Holy crap! This felt not like a death sentence, but like a torture sentence. It's been a year since the diagnosis and I'm not in diapers and can still see (albeit just as bad as before ha ha!) so, I thought it might be helpful and reassuring for you if I tell you what my brand of MS is like so you don't assume the worst.
The absolute biggest change this disease has had is psychological. This is a messed up disease. There is no cure. They don't know even what causes it. Pardon my French but I'm scared shitless! I'm scared I'll wake up one day and not be able to move my legs. Or that I'll wake up and be blind. Or worse. There are countless ways this disease can debilitate me. There's no guarantee those things will happen. It's possible I'll go the rest of my life and it will never bother me again. But it's always there. Whispering in my ear. Pulling at my feet. Clawing at my legs. Waiting for the worst possible opportunity to pounce. This disease is a constant reminder that I am not invincible. I am constantly scared my body is going to fail me.
Is there anything unpleasant that you think about every single day? Sometimes several times a day? That's MS for me. Every time I stumble or have a pain or can't remember something I wonder if that moment is the beginning of an exacerbation. It can quickly turn into an obsession. When things are moving along normally, I don't think about the disease. Most of the time, I'm just me, living life and cruising along.
Before I started the treatment I felt like there was a huge object looming over my head getting closer and closer every day and I wasn't doing anything to keep it from dropping on my head. That realization was a big turning point in making the decision to start the treatments. I know that no one knows what the future holds, but having a chronic disease gives a little hint that there's something bad waiting for me and there's a pretty good chance I'll meet up with it. Bleh! I'm a planner. How do I plan with this? It's a cruel joke. I am acutely aware that there's literally no telling what tomorrow has in store for me. This is something I'm trying to come to grips with. I feel like I need to have a backup plan for everything just because I have this MS monkey on my back. I feel like I have to take IT into consideration all the time. What if I get too hot? What if I get worn out? What if I have an episode? Good grief. I think this is what people mean about moving on and coping. It's frustrating. There's not a break from it. IT comes on vacation with us. IT comes on date night with us. IT is there for all the holidays. IT just sits there, hiding, waiting.
I'm grouchy at the MS more lately. Stupid thing! Go on with your bad self. Leave me alone! I know it's because I'm really struggling with the treatments and I'm stressed about the various hiccups that spring up in life. Stress can trigger an exacerbation. So, I find myself stressing about stressing. Gah! I'm constantly reminding myself to chill. I am so thankful for my husband, who is the most laid-back person I think I've ever met. He is definitely my pillar of strength through this debacle.
So, besides the psychological affects, my other chief complaint is my legs and feet. I often get a "pins and needles" feeling in my feet. It's not like when your feet go to sleep. This is more like someone is poking my feet with needles. Sometimes it makes me jump. Most of the time it's just annoying and mildly painful. It doesn't affect my ability to walk though. I'm not quite sure how to describe the problems with my legs. I usually refer to it as "my legs are screaming". When they start acting up, they're very vocal. It's not like an ache in the bone. Sometimes it's the muscles that scream and protest but I think that may be from a lack of exercise. Most of the time when they hurt it's a searing pain in the whole leg. Occaisionally it makes it hard to walk normally, but most of the time I can muddle through it. My feet and legs don't bother me every single day. I think it's maybe a few times a week, especially when I'm exhausted or stressed.
About the treatments...ugh! I'm committed to them and I'm really glad we made the decision that this was definitely what we wanted, because otherwise I'm not sure I'd have the willpower to continue them. I do my shots out of hope. There's no guarantee they'll prevent me from having another exacerbation, but I hold on to the hope that this is going to work. I cling to the hope that this will help me from deteriorating. I am hopeful that there will be better, more effective treatments that are easier to deal with. I hope. I hope. I hope. I hope!!