I am a junior in high school and am currently working on a project in my Anatomy class. Each student gets "diagnosed" with a chronic condition, and so for the next three months, I will be doing research on what it is like to be living with Multiple Sclerosis and how to deal with the physical and emotional aspects of it. First of all, I really hope you are doing well despite everything that has happened.
I was wondering if I could ask you some questions about MS and how things have changed since your diagnosis. My questions are below and I am looking forward to hearing from you! Sorry in advance if some of my questions are too personal; it is okay if you do not feel comfortable sharing.
1. Aside from the relapses, how has MS affected your daily routine? Are there activities that you cannot do anymore because of MS?
2. What kinds of nutritions do you have to look out for? Has MS affected your diet?
3. How long do the relapses usually last for? If on medication/therapy, will relapses never occur?
4. How has your physical and emotional state changed since your diagnosis?
5. Have your life goals changed throughout these past few years? Has MS affected these goals and if so, in what way?
Thank you so much for your time,
Trust me, these aren't too personal. I just had to sit in the office of one of my instructors and tell her why I can't sit still and have trouble concentrating in class. It's not really something that you want to HAVE to talk about face to face. It's kind of embarrasing when I'm doing a skill and my instructor asks me a question and I know the words I want to use, but I just can't force them to come out of my mouth. Happened to me last Wednesday. I was horrified but she was really nice about it and asked me questions and prompted me for reply.
1. Daily routine: I had to readjust things like shower time because of fatigue. If I take a shower in the morning then I feel like I need a nap by the time I'm out. Somehow that doesn't help at night and I pretty much only sleep about 3-4 hours a night. I can pretty much still do everything that I could physically do before, but it's harder for me. A lot of people don't get it, because they can't see it.
2. I didn't eat a very strict diet before I was diagnosed, now I eat a lot healther and try to watch my diet. I haven't really had any dietary changes other than I noticed that wheat products upset my digestive tract so I just don't eat them.
3. My first relapse was about a year ago. It included numbness and tingling in my face that progressed to feeling like it was literally on fire. Light a match and stick it to your face, on fire. But only on the right side. Since it didn't interfere with my mobility I still went to school and pretended (poorly) that everything was okay. Right now I take Betaseron (interferon beta1-b) and have not had any relapses on this medication. I dont' really like the medication-it's an injection and causes bruising, redness, soreness, and some discomfort at the site. My neurologist and I have looked at the different medications and he feels that this one is the best for me, despite the side effects.
4. Physical state: pretty much the same other than I hurt almost all the time. My emotional state however; poor. I don't know if it's the MS, the medication side effects, or what else, but depression has hit me pretty hard. I take an antidepressant for it, but I haven't noticed that it has helped me yet. I'm hoping to see some changes soon. The depression makes the MS feel worse and the MS makes the depression feel worse. Not a good synergistic effect.
5. Before I was diagnosed, I was applying to nursing school. I got the diagnosis, then I got my acceptance letter a few months later. I'm in my second semester. I thought I wanted to be this awesome nurse with a CNM(certified nurse midwife). Now, I'm just trying to finish school. I have a three year old and a husband and I want to contribute to my family. My major goal is to stay as mobile as possible for as long as possible so that I can actually participate in my family. I would like to have more children, but I don't know if I will be able to or not.
I hope this helped and you can ask me more questions if you need to.