*It took me a long time to decide whether or not to post this entry. Parts of it may be hurtful to some people and that's not my intention. The whole reason I started this blog was to have an outlet for the physical and emotional stress MS puts on my life along with a place to just express some of my rambling thoughts.*
**I know that there are people in the world that deal with far more serious injuries and illness than I do and they do it much more class and courage than I.**
Take this summer for instance. It seems all I do is lounge around the house in an attempt to stay cool. The one thing I struggle with most as a result from my MS is fatigue. The heat of the summer always makes it worse and this summer has been the worst since that first summer after my diagnosis six years ago. WOW, SIX YEARS!!! God has been so good to me these past six years, but with the heat of the summer I just kind of disappear from society. While everyone else is out participating in the world by working, going on vacations, hiking, swimming, jogging, biking, and whatever else there is to do out there, I am stuck inside trying to stay cool. My comfort zone is at about 73.5 degrees and sometimes even just a half degree change in the temperature can start the phases of discomfort. The heat zaps my energy away in no time flat. This year we basically had two or three weeks of spring and then the summer heat moved in. The past month has been down right ridiculous and as my dear friend Denisa put it, it's "stupid hot outside" with temperatures above 100 degrees most of the month of July. The heat not only drains my energy, but it also completely reinvents my sleep schedule. I sleep all day and I'm up all night. So with the exception of a few weeks, my summer has pretty much consisted of my laying in bed all day with the lights off and the fans blowing over me and not emerging until the sun goes down. Even then it's still too hot to really do much. Thus my life is not any more interesting than a speck of dust.
There just doesn't seem to be much to write about other than my daily struggle with the disease. I just can't put my brain in that mode of dwelling on the negative, even though I'm sure it would be therapeutic since there isn't really anyone I can talk to about it. My friends haven't been the best at being supportive through this and I can't really blame them. It's not that they aren't good friends, but they just don't want to hear about all the negative aspects and I think they easily forget that I really do have this horrible disease because I don't have "visible" symptoms. They don't realize that we are pretty similar. They talk about their families and about the latest thing their kids have done, because their families are the biggest, everyday thing in their lives. If I don't talk about how I'm doing with my MS then I most often don't have much to talk about, because that's my everyday. I don't have a kid or husband/boyfriend to help make life interesting. I don't go out to clubs or bars to meet new people. The truth is I've never told anyone how I'm really doing. I've heard my friends comment several times on people who "always have something wrong" or are "paranoid." They don't exactly make me believe they really want to hear how I'm doing. As for the other people in my life, either they are obviously not interested, don't want to hear it, or they already worry too much and I just don't feel like I can add to that. I know and am willing to admit that part of these perceptions and feelings are from the depression that often goes along with MS and at times I am a little bit jealous of the lives my friends have. I never ever thought that my life would be what it is and what it is not. Also, I have not talked to my friends about these feelings because that's a conversation I just don't know how to have. Like I said at the top of this thing, it isn't my intention to hurt anyone's feelings. I just need to have an outlet where I'm not being judged, where people aren't thinking I just want attention or sympathy. The fact is this life is much harder than I ever thought it would be.
For now I have to be content and at peace. I will overcome this. I have not and will not give up or give in no matter how hard it gets. It's just hard to block it out all day every day, and every now and then I have to exhale and empty the tank that's been holding it all in. I know that I'm not alone on this journey and that God is always with me, which is enough. As for everyone else, I think eventually we'll figure out how to do this dance.
RLJ
