MS Life

Welcome to MSLIFE If you are new to this blog, please read from the bottom up so that it will make sense to you. This is the latest blog, not the earliest.

I have made a terrible mistake and it is costing me today and I don’t know for how long. OVERKILL!!!

I was so damn stubborn about fighting MS that it is now wreaking havoc on me. I fell asleep in my office chair, not unusual for me. At 6:39, after a night in the chair, I woke up shaking and jerking. I stood up to use the bathroom and found my feet were wet. I tried to move and slipped and fell onto the floor. My husband didn’t hear me because he was where he should be, upstairs in bed.

I crawled over to my office chair and tried the old trick of using the chair to stand up by crawling up it; the chair rolled away. I fell again hitting my chin on the floor which reverberated in my neck. I made it up this time. I wobbled on my feet and felt myself wanting to go down again but quickly sat on the office chair to prevent it.

I looked at my surroundings and realized that I had lost control of my bladder during the night. That’s why the floor was wet and the bottom of my nightgown was wet, and its part of the reason that I fell. The other reason is that my legs were not holding me up very well.

I knew I had to get to the bathroom or get in bed. I sleep on the convertible sofa when I know I’m going to have one of those nights, which are most nights. My husband had set up the bed for me so I knew it was open because I had taken a nap earlier in the day (yesterday) in it. I saw the walker as there is one almost everywhere in the house, and wobbled over to it feeling my legs wanting to give out again. It’s a feeling like someone stands behind you and suddenly they kick out your knees from behind.

Half way to my walker, I felt it; I went painfully down hard on one knee. The walker was within reach so I crawled up it and leaned heavily on it. This walker has a lid you lift up on the seat where you stash your stuff, so I collected what I needed to get rid of out of the office and what I wanted in the other room.

I made it into the kitchen and dropped off my glass and my coffee cup at which point, my other knee brought me back down to my knees. As I crawled back up, I noted that the sun was coming up. The dogs stirred in their house but I ignored then knowing my husband would hear them and come down and take care of them.

I continued on my way to the sleeper sofa and dropped off the rest of my things. I realized I no longer needed the bathroom probably didn’t in the first place and looked at my makeshift bed. I have a perfectly grand hospital bed upstairs but knew I could not make it up the stairs. I knew I should clean up but again I could not make it up the stairs to the shower.

Indecisively, I stood wobbling and jerking (myoclonic jerks) and wondered if I had any appointments today. I knew I had to go back to my office and my date book; so I turned my back on the now appealing bed and started back through the kitchen and into my office. I checked my calendar and was happy to see I had no outside appointments. This meant that I could go back to bed and sleep for a while without interruption.

I sat down in my office chair and decided I had to write this down before I forgot to do so. I wanted a cup of coffee but the dogs were up and yapping to get out. I knew my husband would be down shortly to take care of them then I could ask him to make me up a coffee.

Sure enough, I heard him come down the stairs to release the dogs to the outdoors. I asked him for a coffee. We have a Keurig machine so one was ready in no time. He found me sitting here in my nightgown with a sweater and the hood pulled over my head; usual garb for being at home. My back was turned away from him and I saw his arm reach over and place the coffee in my coffee warmer and turned it on. He didn’t say a word to me and walked away.

Shortly, I heard him going back up the stairs to bed. He sleeps till he is ready to get up. He had let the dogs back in but I ignored them and kept typing on my laptop. I had my coffee and my weekday had begun.

I sat here and typed also ignoring the pain in my knees and the jerks and as I sat here I realized that there was much to be done even though I didn’t have any appointments. It overwhelmed me and now I’m typing in real time.

I have decided to take a break and check on an overnight trade I placed. I will be back and explain about what needs doing and why I’m so anxious to get this blog typed.

I turned and faced the other computer, the keyboard isn’t working for some odd reason, and realized that before I fell asleep last night I was playing a card game called “spider”. It was still up so I decided to finish it before checking on the trade.

Hi again, it is now 1:21 pm. I fell asleep at the computer. However, I’ve been upstairs, showered and changed so that accounts for some of the time lost.

I have no idea where I left off in this blog and you know what? I’m not going to bother reading back until it comes time to proof it. I would rather start from here.

I am feeling better now that I had some more sleep even though it was still in my chair with my soiled nightgown. Everything is ship shape and so am I as far as cleanliness goes, but it’s not as far as emotionally.

I am here to tell you about my life as an MS patient. The reason this all started was because there were no books that satisfied my curiosity 5, 10, 15 years ago about the disease. It was all very technical. Even today, there are some books worth reading but still the focus is on “What is MS” and blah blah. There are also chapters upon chapters about the different treatments for MS and chapters upon chapters about the various types of MS. Once you’ve read them once in one book, you don’t need to keep reading about it in other books although there are differing opinions etc.

Then there are the holistic books, the self-cure books, the “all in your head” books, the “go to a foreign country” books, and so on. All of these books are worth reading!!! But they were not the book that I was looking for, at least back then.

Recently books have come out about the disease where people talk about their lives with MS. For the most part, these books talk about the misery of it, the unquestionable fatigue issues, the family issues, etc. These books are all worth reading as well. Yet still, it was not the book I was looking for.

The book I’m looking for is being typed as I type. What I wanted to know was what is it? “Huh”, you are asking yourselves. Really, what is it? What happens to you? What happens from the moment you get up to the moment you go to bed? What is your daily existence with it? What can I expect? What are the doctors visits like? What happens to different people with different lesions? How are we the same and how are we different? Why are some in wheelchairs and others not? All the curiosities of the disease are what I was after. In other words for me, I wanted to know what to expect! Now I know.

There is no book that can tell you what to expect because there is no such thing with Multiple Sclerosis. It is uniquely different in each one of us. Sure there are similarities, but in the day-to-day living activities of each one of us, the variations in how we react to stimuli are as different as a face of everyone we meet. No one of us is the same. So how can there be a book that tells us what to expect? There can only be books on what each person’s life is like living with MS. There is no right book or wrong book. There is no book.

I am here to admit to you this day that what happened to me this morning was completely unexpected. I have lost control of my bladder before, that’s nothing new, but this falling over suddenly and without provocation came out of left field. The crawling up to stand, then the falling over again twice was beyond my comprehension.

I have been feeling as though I will suddenly fall and catch myself in the last week or so, but to actually fall was terrifying for me because I could not control it. When it happens once, okay, but it happened again and may have happened even more had it not been for the walker to hold me up.

Okay now. The purpose of this blog is to be able to say that “I am enabled by my disability to lead my life like yours, only different. That I am in fact ENABLED by my disability to look at life differently and I’m given the opportunity to be creative on how to handle any given situation.”

What happened left me crying like a child, hurting over my “boo boos”, and having nowhere to turn for help except from the strength from within. I had to literally pull myself together to get on with my day and do the many things I had on a list to do. I did none of them. Instead, after my shower I came down here and continued working on this blog.

This is the book I want on a bookshelf. This is the book that will be on a bookshelf because I command it of myself. For the first time I felt like my attitude towards it all was overkill to the nth degree because sometimes you just can’t or just don’t feel like turning it around and turning it into something positive. Today, I was little girl lost. Later I became a woman in charge of my life. Tonight, I will be as I always am, looking for the positive slant of things.

So tonight I say to you, because it’s taken me all day to write this, that sometimes I can overkill a subject to a point where I can actually do myself some harm. Tonight I say to you, it’s okay to be little girl lost or little boy lost. Sometimes there is no positive slant on things. They simply are.

Tonight I say to you, I was little girl lost this morning, but tonight I found my positive slant. Things are what they are. I am a sick person with Multiple Sclerosis.

Yet tonight I say to you “so what!” Let’s keep going and see it to the end. “So What!!!”