I saw this ad for a sweatshirt on Multiple Sclerosis Awareness Facebook page. This all resonated with me deeply. The line that got me the most was, “I dream of a person I was.”
I say this to myself in some form or another on a daily basis. “I wish I was who I was.” “I miss the old me.” “I just want to be the person I was.”
It is both the MS damage and the recovery from the HSCT that is causing me to live a disabled life, but I keep praying and hoping it will all get better. I am constantly tired, and too exhausted to perform a normal day’s activities. With three small kids at home, that is very hard to deal with. More than half the time, I go to bed before my kids do and I just have to trust that they will actually go to bed. It is just what I have to do when my husband is not home. He works away from home one to two weeks out of the month, and it is exhausting.
Even when we plan to do events, it is so obvious that I am so far from who I used to be, I don’t even recognize me. I don’t do the planning, the driving, or most of the prep work, but I am the one who is too tired to walk around the park, or walk into the store to shop. How has this become my life, I find myself asking.
I am a different person than I was and I need to figure out how to accept that completely. Or do I? I don’t know which would be better, honestly. Would if feel like giving up if I never expected to be able to do things? Or would it be less sad for me when I just can’t go any further when I’m trying to do something?
The thing that worries me the most, is that I feel the optimistic, always happy Rachel disappearing. I no longer wake up happy to get up and do things. When I wake I often think to myself, ‘why bother getting out of bed at all?’ This is not the personality I used to have.
I am thinking it is worse to lose my basic personality than my physical abilities because that is something I have control over. But how do you keep yourself from getting really depressed when you get a series of illnesses so bad you can’t do anything for a month?
Through all this, I promise to not give up! I still want to figure out how to get closer to the Rachel I used to be and I am think my health will still improve from the transplant. I know that adjustment and change are simply hard.
What has made me feel good, is that no matter how I am functioning and no matter what the level at which I’m able to help out, my family is still happy that I was able to come home for Christmas. And they can help out with the kids so that I can relax more than usual. No matter how much I feel I’m becoming a grump, family and Christmas time still makes me happy! 🙂