After my latest adventure, commonly known as the shoulder debacle, I was lucky enough to be accepted into the hospice program. When I first got home, I cried "I can't live like this". I was destined to live out my life with an ostomy. For a person with MS with extremely limited physical ability, including loss of use of hands, let alone not being able to walk to the bathroom to get the necessary supplies to tend to an ostomy, all of this was a death sentence for sure. However, almost 2 years later, I have survived. I could not have survived without hospice and their motto of keeping the patient pain free and comfortable and my husband to take care of me. My hubby goes far above and beyond the typical duties of a husband. So through the ups and downs of every day living, or rather surviving, I am still here. There have been downs when we truly thought I was going to die. To be more specific, I survived a pseudo-bowel obstruction. My hospice nurse is the one who actually worked with the doctor to figure out a medicinal protocol to pull me out of that downturn. So for the past few months I've just been coasting along. Not dead yet but just surviving. As my husband says when I'm at my worst: it's all about quality of life. I have been able to enjoy the company of the few friends who stop in to see me. I have been fortunate enough to be able to partake in some milestones of my family. At one time it was my goal to make it to Michelle's wedding, and I did, and it was lovely. I am now looking forward to my son's wedding. After that there is no other event to look forward to. Truly just surviving and passing time.
As for trying to make note of any further decline caused by the MS, it is hard to say. My right hand works sometimes, but most of the time there is limited use. Just the sheer fact that I've been laying here for almost 2 years has surely added to the loss of use of my legs. But I hadn't been walking for a year, if not more, before I was put in this damned bed. My only goal now is to find a comfortable spot and be able to reach my little table with my water cups and other paraphernalia such as Chapstick and gum. And it's always a priority to be sure my iPad is easily accessible. I would be lost without my iPad. I can't imagine having to while away the hours with just the TV. I suppose I would've wrangled my son or daughter into hooking up a DVD player for me, and I would have a huge cachet of movies to watch. I cannot even hold a book and flip the pages. Maybe there is a gadget out there for disabled people to aid in this.
So today my husband got me up in my power chair in an attempt to give me a change of scenery from the four walls of my bedroom. In the power chair I was able to sit in the living room for a little while and then go to the kitchen to have some ice cream. I struggled with the spoon, but, hey, it was ice cream after all, so I managed. I went back into the living room where I could look out the front window and see what was going on in my neighborhood. I have a tiny neighborhood. There's just five houses on my street, but on this beautiful Sunday there was quite a bit of action out front. I could see my husband trimming the bushes. Cars were coming and going as my neighbors set off on Sunday adventures. One of my neighbors was busy doing yard work. I could hear the neighbors on the next street over just doing whatever they were doing in their yards. I sat there soaking in all the sounds. All I could do was imagine what I would be doing if I could do anything. My feelings overwhelmed me at my own situation. I wanted to go back to my bed. My neck ached, and I couldn't hold my head up anymore. My legs ached as they were already swollen, and being in a sitting position caused them to swell even more. My twisted feet could not lay flat on the foot rest. I wanted to go outside and do something, do anything like I would have done before MS had forced me into this disabled life. I wanted to go back to bed where I was comfortable, and where I could have a good cry.
I don't know what to do anymore to make myself feel useful. I will lay in my bed and enjoy something on my iPad. I will message my daughter and my son. I will try to entertain myself and eat some graham crackers. The day is almost over. Soon it will be nighttime, and I will settle in for the night. I've got to rest up so I can do it all over again tomorrow.
A little piece of me dies every day as I just listen to the sounds of my neighborhood here in my bed in my shalom babayit.
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