I am dealing with the part of this disease that a lot deal with. The inability and fear of getting out, coupled with feeling like you have been abandoned. I don’t even understand why I feel the need to write about it again, maybe someone else needs to know that others have these feelings.
The process of getting in the car, then traveling somewhere, and not being able to get home or even get back into my car: That is a real fear!
I hit a low a few weekends back. I had nothing to do; mind you, I did not say there was not things that could have been done. There were plenty of things needing done, but I had no one there in case things went bad. I was left completely alone on Saturday, the husband went out of state to visit his family and spend the day in the mountains looking at leaves changing their color. Oh, I could have gone outside and raked some, but the question would be: if I did would I have paid attention to how long I would be out there and pulling on my back? What would I have done if I could not get back into the house? Or, to make the job quicker I could have used a leaf blower. The last time I used it my arms and back went completely numb, but that was before surgery. I was too chicken to try it. I could have hit the malls, but just one level of it can, and has, put me down for days. It is the ‘not knowing’.
Yep, that ‘not knowing‘ is part of the reason I just stayed inside, on my couch. Yes, I am home each day while he is at work, and yes, there have been days I have taken to the bed downstairs in the guest room because I couldn’t get the body to cooperate just to go up the stairs. There have been days that I let a load of clothes sour, because there was no way I was going to go back down those stairs to dry them.
It is the ‘not knowing’ that really gets to me.
It is also, the quiet that gets to me. I have manufactured noise to get me through a day. I have a fish tank that gives off a range of noises; and if that is not enough, there is the TV.
But that weekend really was the pits. I wanted to see Fall happening; I wanted out of my prison! I know that I could not have traveled for that trip easily. But there was no suggestion of them changing their plans so that I could have a visit with someone besides my four walls. Now, don’t get me wrong, I am glad that the husband got to visit his family. Truly I think it’s great. The ‘but’ was that my feelings were not even considered. The last time I was able to see any of my family was when the father was in the hospital. I don’t call that a visit! Now, my father cannot travel, it is too dangerous for him. My mom and sister were going to make a trip down; but life happen and they could not do it. In a way it makes me pity myself that my freedom is lost.
You really, truly don’t know what you have until it is not there anymore. Your mobility is a must in your everyday. It is not like it was for our grandparents who might have lived within walking distance of their parents, siblings or children.
This week I will have things I need to do with my daughter, but I am afraid that I will be more trouble than it would be worth to help her move into a new home. I want to help but she is working on a tight time frame. She’ll not be able to chauffeur me around if I get into trouble. She won’t have a place, besides the car, for me to take a break; but I will help.
This inability and fear seems to be growing stronger. I try to keep it to myself and I try to work through it privately. My family has never discussed how my illness affects them, and I am too chicken to ask them. I don’t want to know because of my fear. If I were to know, then I might be angry, or saddened, or ashamed. All I know is that the two things I have suggested that we change has been nixed very strongly. Heck, I am even too afraid to walk to the mail box, the driveway is steep. If I were to slip on a gum ball (sweet gum tree’s offering) I would definitely not be able to recover my balance. The pine needles are getting deep and treacherous. So how am I even to walk down to check the mailbox?
Now, you might be thinking why doesn’t she go out with friends? The truth of the matter is that I have no close friends. My father was in the Air Force and we lived in 15 or more different homes before I graduated high school. Then a few years back, the husband’s job moved us again, then once again it moved him (I refused to move that time since he was so close to retiring). My life revolved around the children as a stay at home mom, you never have time to make new friends when you are sitting behind a wheel or volunteering.
Maybe it sounds like I am making excuses for my isolation. Heck, I don’t know the answer to that one myself. Right now in this instant I do know that I am mad, feeling sorry for myself, and afraid. I don’t even have the gumption to work on the paint by numbers I have sitting around. And no, this is not depression, it’s being angry at my situation.
To make matters worse, I need help Christmas shopping. I like ‘the getting out into the stores’. I like to see the displays. For our whole marriage I have handled this chore, believe me it was easier than taking the husband with me. He hates spending money and the few times he went with me was a total waste of time and emotions. Maybe that was a mistake, because I really need him to step up and get me into stores but he has always been pampered and his sports watching took precedence. Now just the suggesting that he take me, by me, causes the frustration to grow.
I know from reading other blogs out there that I am doing way better than some others, just this knowing makes me feel guilty for the way I feel. There are many that are chair bound and need assistance with daily living. I can’t seem to wrap my mind around that being a possibility for me. If that were the case for me, how much more fear and frustration could I handle? Lordy, I have no clue how I would handle life.
I have written about this topic before and so I’ll help you with these links: