Feeling Defeat

This past week has been a challenge for me. On Monday night I ended up getting a headache, which turned into a migraine. By Tuesday morning I couldn't even find the energy I needed to push myself out of bed that morning. I had to call in sick to work, which I hate doing, especially as I am trying to save my sick days for if my insurance ever approves the Spinraza treatment. The headache lasted off and on all week at different levels, but luckily I only missed the one day of work. With that, I overall just didn't feel that great throughout the week. I did start feeling better by the weekend, but still not to 100%. I was hoping it would only get better from there, as I had a big weekend coming up the following weekend. I wanted to finish all of my homework during the week. Unfortunately, that didn't happen and I was left with a project to finish and another paper to write by the end of today.

Lately, I have been feeling a little overwhelmed trying to balance work and school, exercise, all things related to dealing with insurance, friends, and personal time. I feel like by the time I get home from work I am too tired to do anything else. I don't know if it is just my mindset or if I am that tired and need to rest. I also was trying to completely cut caffeine out of my diet. Someone told me that with SMA it takes more energy to do everything, because if you think about it, your muscles are having to fight harder just to move. And with that being said, it is okay to cut back on activities.

Well, which activities am I supposed to cut out? All of these are important to me. I have lost motivation for school, probably because I have gone almost a year now without a break. Luckily in a couple weeks I have a one week break and I'm hoping that will be enough. On the other hand, I am so close to being finished, I don't want to take time off. Not only that, but I would also lose my grant and have to reconfigure my student loans. I have to work because that is how I am paying for my car and everything else. Plus, I just started working a job I actually like working not too long ago. Exercise is important for me so I can hopefully slow down or prevent any progression. Taking an hour for myself at least once a week and talking with friends keeps me from going crazy. Dealing with insurance related things is important, because all I have ever wanted is to be able to gain strength and if I can start being treated, that will become a reality instead of a fantasy. As far as dealing with insurance goes, someone told me I need to be talking to them a lot if I want to get anywhere. I should be thinking of it like it is my life I am fighting for, which I am. To let go of any of these things, I would feel like I'm just giving up, and I don't give up.

Sometimes I feel completely defeated, while other days I feel like I can do anything. Some days I feel like the SMA is in complete control, even though I know that's not true. On those days, I have found having support and reaching out has been extremely helpful. I am part of a community that knows exactly what I'm going through and something about that just helps me to feel better when I am feeling defeat. Not only do I have support from people in my support group, but also from family and friends. No matter your situation, I think it is important for you to build support all around you to help you through bad times and to be there to celebrate good times.