A resources book for those newly diagnosed with Multiple Sclerosis written from a layman's point of view.
Take the journey of discovery while living with this disabling and chronic disease. The ups and downs and the obstacles encountered are average for someone who does not live with MS. But, what is needed to help cope with an unpredictable illness? This autobiographical novel will answer many questions in a clear and easy to understand manner. A variety of resources are made available and along with a glossary of commonly used terms. Interviews with patients, caregivers and healthcare professionals give a good glimpse into the illness from all sides. Come take the journey to find out about Bad Nerves.
Excerpt
Spring: A Typical Good Day
I can hear the birds chirping. As I look out the window, I can see the dogwood tree in the yard. It’s fuzzy, but I can see it. Then it hits me. I begin to rub my nose profusely, try to scratch the inside of my ear and rub my eyes. I am having a hard time dealing with seasonal allergies. This is a daily occurrence. Once I am able to breathe, I try to stand up. So from the time I opened my eyes to the time I actually try to get out of bed is about 10-15 minutes. My poor husband listens to this and rarely says anything. He is fortunate enough not to have seasonal allergies. Trying to clear my nasal passages is a bother.
Today is a good day because I can actually see the tree in the yard. Yesterday, that was not the case. So, I try to swing my legs to the floor. Hmmm. I’m telling them to move, but they aren’t listening. So, it’s going to be one of those days. Okay. Since I am already in a sitting position, I prop the pillows up behind me. I reach over to the night stand and grab the TV remotes.
Within the next 15 minutes, my husband comes into the room. “Get up lazy bum.” he says jokingly.
“I am up. It’s a bedroom day. The legs aren’t working.” I reply.
“Okay. Do you want to go to the bathroom now or do you want to use the potty?”
“I want to try to go to the bathroom. Besides, I want to go ahead and wash up. While I’m in the bathroom, will you put the bench in front of the sink for me, please?” I ask.
“Sure.” He walks around to my side of the bed which is closest to the bathroom. All I have to do is get around the corner and the door to the bathroom is right there. It is not a long distance. He leans down and I follow our routine. I reach up and put my arms around his neck. But I decide to do something different.
“Let me try this. I’m going to scoot to the end of the bed and that should make it easier, plus it won’t be so hard on your back.” I suggest.
“Okay. I’ll stand here and watch to make sure everything is okay.” He says and steps back. I really love the fact that he lets me try things on my own before he tries to help. He allows me to have some level of independence.
It takes me a few minutes because I have to physically move my legs with my hands, but I finally make it to the foot of the bed, where is he standing. “Good girl. You are tired, aren’t you?”
“Yes, but… I… don’t….want… to… use the potty, I want to use the toilet.” I say out of breath.
“Okay, can you sit and rest for a minute? I’m going to go check on this file and then I’ll be right back.” He says when I nod my head in the affirmative.
As I sit on the bed, I plan, how I will get to the bathroom and then the sink. I know that it is a short distance and pivoting will take a lot of the work out of it. True to his word, my Carl comes in the room, “Are you ready?”
“Yup. Let’s do this!” I say with excitement
He walks over to me and leans forward. I suggest that he turn his back to me once I’m up and then as he walks my legs will drag behind. He does this and backs me into the bathroom and I sit on the toilet.
“Thank you. I’ll yell for you when I’m ready to get washed up.”
“What? You don’t want me to see you or something?”
“Exactly. Now, get out. I need privacy, Sir.” I respond jokingly.
“Fine, don’t call me when you fall in.” he says as he walks out of the room.
I’m left alone and I begin to think of the best way to get to the sink. I realize that he can get me there the same way and once seated on the shower bench, I can turn myself around. It will take some doing, but I can do it. Then I can bathe myself and once done he can help me get back into bed.
While sitting there, I make a mental ‘to do list’. I have to get my laptop to put this in my journal. I need to remind him to take something out for dinner. Have Carl bring me the phone so I can call the people about the heat and the bills. Make a doctor’s appointment. Call my friend and let her know that if my legs don’t decide to work, that we won’t be going to the meeting tonight and I’ll have to see what tomorrow brings. I also need to remind Carl to go ahead and start the laundry. Once the clothes are dried, if he brings them to me, I can go ahead and fold them and he can hang the things that need hanging. If he puts the hangers on the bed, I can put them on the hangers, he’ll just have to place them in the closet.
When I’m done, I yell, “Carl! I’m done!”
Within a few minutes, he walks into the room. “Oh, it’s okay to see you now, huh?”
“Yup. Can you look in the top drawer and get me a clean pair of underwear and a bra, please. I’ll call you again when I’m done.”
“Okay. Are you sure? As a matter of fact, I’m going to sit here and watch TV while you bathe and I’ll turn my back, so I can’t see you.” he says sarcastically.
“Okay, and you better not peak!” I say playfully.
He gets the items I ask for and places them on the vanity counter next to the sink. I reach beneath the counter and grab my toiletries (shower gel, toothpaste and baby oil). I use my hands to turn my legs around so I can face the counter. This makes it easier for me to reach the sink. Once I finish bathing, I say, “Okay, Carl, I’m ready.”
He walks over and leans down so I can put my arms around his neck. Then once I am standing he turns around so that I am leaning on his back and he backs me up to the bed. I sit on the foot of the bed and scoot myself up to the head of the bed where I get under the covers using my hands to maneuver my legs. I am so tired when I’m done.
“I know you have some things that you want to take care of, but rest for a while first. That took a lot out of you. Tell me what you want me to do.”
So I remind him to take something out for dinner, start the laundry and bring me my laptop and the phone. Since he wants to make sure I rest, he leaves to handle the first two assignments and doesn’t bring the phone or my laptop until he returns. I hate when he does that. But, I understand. He says that I’m ‘stubborn’. I say I’m ‘strong willed and independent’.
The rest of the day progresses along slowly since I am confined to the bed. Things that I would normally do, I have to wait for someone to do them for me. As on I put clothes on hangers I sit in the bed, I exercise my legs as much as I can and pray that the movement will come back. If it doesn’t, then I’ll call the doc in a couple of days for an appointment.
Okay, my movement did not return, so I have spent the day sitting up in bed. I folded a couple loads of laundry and placed clothes on hangers for Carl to put in the closet. Most were his shirts anyway. Maybe tomorrow will be a better day.
A New Day
So, yesterday, I woke up and had no movement in my legs. Today is a new day. I open my eyes and I can see clearly. That is a good start. I can wiggle my toes. Another good sign. I stretch and I can move my legs. Yay! I’m back. I sit on the side of the bed and reach over to get my laptop as I am rubbing my nose and eyes, trying to breathe. Finally, I am finished with my morning nasal congestion and can focus on my plans for the rest of the day. Since Carl and I did the laundry yesterday, all I really have to do is some light cleaning and cook dinner. But, I want to be careful because I’m already tired and I just woke up. My legs feel like they weigh 50lbs each. My left arm is tingling and my back feels like someone has been punching me for hours. At least I can see clearly with both eyes today. Yesterday, I could see, but not clearly. Things were fuzzy.
I know that because I am past exhausted that I have to pace myself. I decided to sit up and take care of sitting tasks first, then go get something to eat. By then, it should be after 11am and I can hold it down. I hate that my stomach does that and I have to wait so long before I can eat anything. That is, if I want to keep it inside my body so that I can digest it. Anyway, Carl hears me moving and comes into the room. “How do you feel? You didn’t sleep well last night.”
“I’m sorry if I disturbed you.” I comment apologetically.
“No, it’s okay. I could tell you were in pain because you moaned and tossed and turned all night. So, I want you to get some rest today. Take it easy, LaRosa. I mean it. What do you want to eat?”
“In a few minutes, can you bring me some cereal? The legs are working today, so I can get to the bathroom on my own. I’m not going to take a shower, just do a bird bath because I’m exhausted and I don’t want to risk falling again. See, I’m trying to be safe and smart about things.” I say with a huge smile.
He leaves the room and a few minutes later he comes in with the cereal. I have already gone to the bathroom and am about to bathe. I sit and eat the cereal, although it’s a little too early. But since he went through the trouble to get it for me, I go ahead and eat it. I don’t want him to think I’m ungrateful. Besides, I need to rest for a minute and this gives me a break without looking like I’m taking a break. Once I’m done with the food, I find something to wear and bathe. I sit and rest for a few minutes before gathering the breakfast dishes and leaving the room.
When I walk into the living room, he is watching TV. The studio light is on, so I know he is back and forth. I take a closer look and realize that he is reviewing a video that was done when the kids were small. “Hey, I haven’t seen that in years.”
“Yeah. I found this and some other tapes and decided that I’m doing to put them on DVD. I was just going through them. The quality on DVD is so much better and no one uses VHS anymore. Plus it will be easier to store them. Do you have any blank DVD’s?” he inquires.
“Yup. If you look in the bottom drawer of my night stand, there is a brand new spindle of DVD’s. You can open it and get a few. Leave me some because I have to get all this music off my system to make room for some other things.”
“Oh, so you’ve been holding out on me, huh?”
“No, I just got them a few days ago when I went to the store. If you had gone with me, I would have bought you a spindle, but since you didn’t I only got one for me. I did not know you needed DVD’s.”
“Yeah, right. Whatever Rosie, whatever.” Came is playful reply
I sit down for a few minutes and it turns into hours. When I realize what time it is, it is after noon. I still have to take something out for dinner. Jasmine and Marilyn will be coming home soon and I know they’ll be hungry. Just then, my cell phone buzzes. It is Jasmine saying that she wants pizza and that they are ordering the pizza to be delivered. She also says that they are leaving work early and want to know if Carl can come pick them up in an hour. I relay the message and continue to rest. He leaves to get the girls within about 45 minutes since we do not live far from their job at Six Flags. When he leaves, I go into the kitchen to get the paper plates for the pizza. I don’t feel like washing any dishes and I know the girls won’t either. Carl rarely washes dishes, so paper is the way to go.
After we eat, the girls clean the kitchen and I slowly make my way back to my bedroom. Once I sit on the bed, I realize that I did not get any cleaning done and I basically sat around all day. Even though I rested, my legs still feel like they each weigh 50 lbs, my left arm is still tingling and my back is still killing me. I’m going to give it a few days and if I don’t feel better, I’m going to have to see the doc, for sure. I do another bird bath, thinking that I will be able to take a shower in the morning and get into bed. I turn the TV to my favorite channel and the next thing I know, it is morning.
Professional Reviews
Great Insight!
A must for anyone who lives with someone with MS or even knows someone. A must read for every one!!!
