Here I thought I was going to get a semi-coherent blog post in sometime in the near future. Well...I kind of got there..except for the fact that I don't even know where to start. There are still a lot of things going on with my health and my energy levels. No matter how hard I try I just can not seem to do everything I want to in a given day. Part of the problem is that I have incredibly unrealistic expectations for myself. Case in point, I wanted and expected to be able to make it to Mass this morning despite the fact that I didn't sleep until 3:30 AM at the earliest. The biggest problem here is the fact that my energy levels are lower and my pain levels are higher when I don't get my required amount of sleep. Eight hours is on the low end of my sleep requirements. I can only go one or two nights in a row on eight hours and then I start to crash. The only reason I know that is 1) I've tried to go on less than eight hours of sleep and it ain't pretty and 2) I've tried more than two days in a row on eight hours which also isn't desireable.
Ugh. I'm doing everything I can. I want to have all of my homework done and do well in my classes this semester. So far I have made my dream a reality. But the problem is I can't stop now. See, the end of the semester is just about six (or so) weeks away. That means I'm getting closer to summer. Finally. I can't tell you how much I am looking forward to being able to do more things on my days off and also just to have a simpler life. I can devote more time to things I enjoy rather than things I absolutely have to do. Meaning, I can go on some road trips and enjoy more of a social life. At least, that's my goal. But I have to cool it with the way I am expecting my body to tolerate everything. My body has made it abundantly clear that it can only handle so much. That means, so much activity, so much food, so much sleep deprivation etc. The older I get, the less my body can tolerate in those respects. I thought about maybe trying to exercsie more. I still feel that it's a good idea. But, I have to make sure that when I exercise I don't overdo it. Meaning, I can't let my heart rate get too terribly high and I also can not push my muscles too far. If I expect my muscles to do more than they are able to, I begin to have burning and shaking. Not good.
There are days when even daily life seems like way more than I can handle. Sometimes I get reminded of difficult times in the past and I come close to losing it. For example, a few nights ago I ended up going through a bunch of old facebook posts and completely lost it. Not just crying, I'm talking bawling, nose running, fast breathing crying. Not fun. I know that sometimes I do that to myself by doing things like that to make it happen. But sometimes I also don't realize that my emotions are going to take control. As a general rule I am a very sensitive and emotional person. See, it's doesn't take much for me to start crying. My emotions become even more intense when my health is really bad and when I am crashing. I seriously thought I was coming close to crashing tonight at work. Thankfully, it didn't happen and the spell passed, but I wonder sometimes. How long will this hold off until I actually end up having a full-blown crash again? I dread energy crashes. See, I haven't had a really traumatic or serious energy crash since I came to live with my grandparents again. There are probably many different reasons for that. Some of them being the fact that I am very careful about what I am eating and careful to ensure that I eat enough, I am more diligent about ensuring I am getting enough liquid intake, I have access to better medical care, and a host of other reasons.
And, I remember the fact that I posted recently about talking to Dr. P about a possible diagnosis of Mitochondrial Disease. I still need to do that. Actually, I still need to call to make an appointment to discuss this particular issue with him as well as go through lab results. I really feel like I need to get some sort of care plan worked out to prevent energy crashes and also to ensure that I have the best levels of pain control and energy that are humanly possible. I can deal with pain, in fact I have been in pain all day every day for probably around three years now. The fact is though, in order to avoid energy crashes, I need to try to get my pain levels managed at least a little bit. See, pain makes my body work harder for many different reasons. My heart rate and blood pressure increase with pain. I think for the most part this is the reason that both are pretty much always on the higher side. Honestly it makes a great deal of sense because it has been proven that pain increases both heart rate and blood pressure. I am still somewhat apprehensive about talking with Dr. P about this issue. The reason for this is mostly the fact that I feel I will have to be very direct with him and tell him exactly why I want a diagnosis and why I believe Mitochondrial Disease may be the answer. Again, it's not because there is a cure or effective treatment for Mito, because the fact is neither of those really exists. It's mainly to give myself peace of mind and also to keep on top of advances in Mitochondrial research so that I am able to advocate for myself, I may have access to more help, and if someday a cure or more effective treatments do come, I can use them.
Honestly this whole situation is bittersweet. I truly am doing my best to be happy and enjoy life. The big problem is there is a lot standing in my way. Part of the problem is I am partially in control of my own happiness. But, my attitude tends to be quite negative at times. When I am dealing with all of these issues it is difficult to put a smile on my face and be positive. I get tired of dealing with all of this and on top of being exhausting it is also frustrating. I don't reveal my illness to many people because I am afraid. I am afraid that they will not believe me and also I am afraid they will see me differently than they would if I was not sick. Many days I wonder if my dreams will ever come true. Sometimes I feel like I will never get married because a) no guy will like me b) Even if a guy does like me, once he finds out about my illness he will run away and c) I'm afraid of trusting a guy. Yeah...I want to get married and have children some day. I truly feel that it will happen someday despite all of this. Every night I pray to God that at least some of my dreams will become a reality. I want so much to make sure that God knows that He is number one in my life. He is the one who made my life possible, created me, and gave me and my life meaning. He has a purpose for having me on this earth, otherwise I wouldn't be here. That makes me feel very loved. But, I sometimes wonder if my hopes and dreams are not a part of God's plan for me. Unfortunately, at this point there is no way for me to know.
So for now all I can do is keep plugging away, keep praying, be proactive and try to have the most positive attitude that is possible. Tomorrow I have to be up somewhat early to go to another town about half an hour away for school, so I really need to get in the shower and get ready for bed. I am so grateful that I have this blog because it's a place that I can truly unload.
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