I have two sisters (there once was three) and one brother. There are quite a few step brothers and sisters. I also have quite a few nieces and nephews that range in all ages.
My Husband (Mickey):
In all fairness to my husband, we have had a pretty good marriage. We've been married for 26 years. All couples have problems and we have our share too. We both love and care deeply for one another. With both of us raising kids, working, coming home tired, we fell into a routine of discussing what we needed to and going to bed. We never had to deal with a chronic illness before, therefore neither one of us were prepared for what my needs would be.
My husband, is a fixer. With a rare, chronic illness there's really nothing to fix (no quick fix). With SM, doctors won't operate until you're paralyzed or your syrinx encompasses the entire spinal cord, compromising the flow of cerebral spinal fluid.
When I came home from the hospital, he had everything I would need to manage inside the home, on my own (he works through the day). He had purchased a recliner that will place you in a standing position, because the doctor, or therapist, suggested that something like this might be helpful. He made sure there was also a snack table for meals eaten in the Living Room. He got a high chair for the kitchen so I could sit while cooking or cleaning (a time before I realized these things made the pain and tremors worse). Standing was a major issue because the tremors were out of control. He also had everything, and more, the doctor or therapist had recommended for the bathroom.
He did everything possible to make sure I felt safe and comfortable in my home.
Over time, he's added numerous things and moved furniture around or to another room, in order to make it easier for me to maneuver through the house. If somethings not working out, he'll fix it, move it, make it or buy it to make sure I'm comfortable. The best things, not to downplay anything else, were building ramps at all the exits, putting safety rails inside the shower and attaching the mirror to the wall, in the bathroom.
He's made so many adjustments in his life to accommodate my illness and inability to do anything too strenuous, or anything that would cause an increase in pain and several other symptoms.
- He has taken on all the household chores. I try to do my own laundry if someone takes my laundry bag to and from the garage.
- He does the yard work and gathers and takes out the trash. We have a pick-up once a week.
- He already did all the grocery shopping so nothing changed in this area.
- We both worked before and now it's just him that has to wake up early and go to work. I do wake up with him in the morning and I still contribute my regular amount to the household fund we use to pay our bills from.
- Every morning, he makes me a caramel macchiato, brings me an icepack and most mornings he has to help me get to a sitting position.
- He picks up the newest DVD's each week so I have something "new" to watch.
- He keeps track of, and pays all the bills.
- He has to do all the driving if we go anywhere, or whenever I have a doctor's appointment. He goes in with me which is terrific. I have an average of 5 appointments a month.
- He takes care of dropping off my scripts and picking up my meds each month.
- And, anything else I can't remember at this time, but basically, he does it all.
In the beginning, Mickey was having such a hard time with cleaning the house. I was use to being too particular with (dusting, mopping, vacuuming and cleaning the walls) everything and believed that everything should be in it's place. No mess, no clutter. I was frustrated with his way of cleaning but I couldn't do anything about it. His motto is "a house should look lived in". I say, lived in but not trashed!. LOL
One weekend, I called my daughter, my nieces and told my son, that I needed help. I really needed someone to help clean my house because it was so dirty. I ordered pizza and everybody (except my daughter) did a wonderful job of cleaning my house the way I was use to seeing it. At least my house was clean again since I had learned my lesson that it was something I couldn't do without needing to go to the ER or my PCP for better pain meds. Most times, over doing it puts me in bed anywhere from 2 to 4 days, screaming from the pain.
After that, my husband told me that I didn't need to call for help. He knew how to clean and he'd take care of it (you know, the things us women make sure are done when cleaning). All I can say is he tries but I'm embarrassed to invite company over. I do have one friend that comes over but most of the time, we sit outside on the porch and talk until, either my voice goes out or my tremors and pain get worse. Heaven forbid if she were to ever ask to use the bathroom. Talk about embarrassment, I don't even want to think about it. It really took a lot of adjustment on my part to just let go.
Actually, there was another friend (early on in my illness) who use to visit every Thursday, before she started working. I must give him credit, he did make sure the living area (not my bedroom) was clean every Thursday. My son does the bathroom and sometimes he would do it, sometimes not.
I can, and do, understand how he could be so extremely overwhelmed, and tired, with all that he's doing, that it becomes easy to put what I'm going through at the back of his mind.
I also understand why we spend so much time apart, even when he's home in the evenings and on weekends. We don't watch the same type of programs on television and we each have our own computers (in different rooms).
I don't understand why he doesn't provide a listening ear, encouragement, words of comfort or a shoulder to cry on when I'm having a really rough time, and depression is high. I would say that I've experienced approximately 7-10 occurrences over a two year period. I think it's not such a major deal and it shouldn't be that difficult. However, I'm not walking in his shoes.
He's not a natural caregiver. That makes so much difference. For instance, I am a caregiver by nature. It doesn't bother me at all to listen to others, provide encouragement, comfort and basically "be there". He'll be the first one to tell you, that's just not who he is. He's never been a "people person" and could care less about sitting home alone all day, while I love spending time with others.
The bottom line is: He does what he can, in his way. I accept him for who he is, and not who I want him to be. He can't provide the encouragement and emotional support I need, however, I'm completely thankful and appreciative of everything he does provide. It's not as if I don't have other options.
There are so many husbands and wives, all over the world, that leave the marriage because they can't handle dealing with, or being with, a sick (or sickly) person. Some may leave because they can't handle the words "chronic illness".
I'm thankful my family is here with me and using whatever talents or gifts they have. I need to recognize the gifts each of us has, and not push for more than GOD has given any one person the skills to manage. I need to recognize that GOD's gifts are where we find them, not who we find them in. I need to separate the fact that Mickey is my husband so I can continue to recognize that he does all that he can with the gifts he does have.
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