Ya know, living out in no where land is hard. There really aren't any services available. I have been looking up support for caregivers and there really isn't much. Yeah, there are some elderly care, memory loss this and that but come on, I am not even 30! We are a young couple with a rare disease affecting us. Times like this living in a huge city would help. I have been searching for blogs of younger couples facing illnesses. I can't seem to find many. What about the earlier stages of HD.... where are those people hiding out?
It's hard to talk about how I feel with family members or friends. Why? Because they DON"T get it. They just don't. And it's hard to be supportive about something you don't even understand. And you know what, If I hear someone say, "Oh it's going to be ok" I might strangle them. Really. Isn't that about the dumbest thing to say to someone who is obviously hurting? You might as well just say, "You know, I don't care and in 5 mins I will have forgotten all about your problem." So no, I don't waste much time venting or sharing with those close. I'd rather talk to a stranger who blogs on the Internet, at least they can relate. And.... it's not always fair to share with those close to us. They know him too. It is kind of like 'talking behind his back'. They are his relatives and friends as well. I stay so bottled up.... then I blow up. The last few months have been different though. Maybe I'm depressed. I don't know. But, of course I don't have medical insurance so I won't be going to my Dr. Oh how the world works...
Bless your heart, B. While we didn't know that my husband had HD when we were your age, we were having a lot of problems that may well have been attributed to it. We lived under the cloud of the possibility for many years (since I was in my late 20s or early 30s). Even though our ages are different from yours (I'm 47, and my husband is 53), you are right. It is a very lonely disease. Very lonely. People cannot even begin to understand the brutalness of this disease, nor how brutally long it is. The thought of it all is so overwhelming. And no one wants to be that story. Even at my age, it makes me feel old before my time and like my life is over. Those are my thoughts on my worst days. Other days, I remind myself to just breathe and to take one day at a time. On good days I try to remind myself not to borrow tomorrow's problems, and then I remind myself of all the good in my life. Some days, this list starts out pretty bizarrely as I reach to pull myself out of the pit of despair grabbing at any crazy story that is not mine.
ReplyDeleteI, too, have looked to the internet with a certain anonymity to connect with others who may understand. I've also thought the same thing about not feeling comfortable to really express my thoughts where those who have tested positive will be there and read it. Like you, I know some days are rough. I may want talk about that without feeling like I have to temper it so as not to burden someone with the disease with what their caregiver may be going through. I figure they have their own burdens.
I have a blog, too, a very neglected blog right now. I am hoping to post more after the holidays. I thought it was important to journal the process. Maybe it could even help someone else to know that they are not out there alone. I try not to make it all about HD. I'm trying so hard to not let that define me and be the sum total of my life.
Feel free to keep in touch. I will add your blog to my list to check.
~Topaz