Daily struggles

 

Today is a day that resembles most days, I am sitting here bemoaning that I have so much to do and I don’t want to do it. Actually that is a lie, I want it done with a wave of the hand so that I can go out do what I really want to do. What I really want to do is go out and be who my mind says I am and not the person that those around me want me to be.

I have been diagnosed with MS , with that diagnosis came much different treatment from every one around me. Granted, those that went through the first years after diagnosis wit me remember how helpless I was at that time. The first years caused me to lose much of my independence, I was part time is a wheel chair and mostly dependent on a cane to walk alone. One of the things that it took me a long time to [and still haven’t completely mastered] understand the depression that comes with MS.

My neurologist told me that all things that happen are not going to be the MS, I still have other things that will affect me. I guess I was doomed to continue on with the Seasonal Affective  Disorder [SAD] and the drive to be outside doing things in the open air. I have always been active, growing a 50 x 50 garden, canning all the harvest we didn’t eat, raising a large family consisting of his mine and ours with all of the inherent challenges  and working full time. As the children were leaving and going on to fulfill their dreams my diagnosis came.

That is off subject, now back to struggles.

When I woke up this morning the sun was shining in it’s brilliant winter way. It is so deceiving, the sun is so inviting and yet it is blow zero out there. I am torn between going out  and shoveling my way out of the driveway so I can go to town tomorrow or staying in and cleaning [I hate that job, especially when I live with a slob (me) that chooses to leave things out] or get on the computer. I guess you see which won out. These decisions only lead to the depression. I can’t do as much as I want, I envision the Wonder Woman that I used to be and am disappointed with what is left. I don’t dwell on that much or I would be crazy, I have learned to forgive my self for not being 20 anymore.

I have people around me that won’t let me do things because of the diagnosis or try to “protect” me. They forget, I am the person that is living inside this body and completely aware of it’s limitations. I am not a dare devil, I don’t want to get hurt but I am still me. I love animals and machinery and digging holes, being outside is the way I survive.

Cleaning house is depressing and THAT is not MS.  Cleaning a house that insists on being dirty is just downright frustrating. Growing a large garden when there is no one but me and an occasional visitor is counter productive. Winter is not conducive to those activities, it is too cold for anyone to be out there for any length of time I am gone to much to take care of it anyway, I have itchy feet I can’t seem to stay home for any length of time.

I am forgetful [MS or age], sometimes and struggle with that. I jump from one project to another, that is defiantly not MS. I have to design a way to stop that but I’ve been working on it for 50 years, still have not found a solution. The only thing that has worked is being a follower, following someone around and allowing them to set the agenda. It is harder to get distracted when you have someone around to keep you focused.

I can’t do as much as I want but that is age not MS.

My new [old] hobby is computer related that invites me to sit in front of the computer and  get lost spending too much time sitting down. I am fully engaged, excited about the possibilities and loose the hours of the day.  How many calories does that burn? I get more exercise going to get a snack. My other winter hobbies are also sit down projects.

The daily struggles are, I guess something that we all have to live with. I want it fixed and I want it fixed NOW.   I am impatient.

OK that is off my chest,  I’ll resume my struggles.

 

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Running away – the girl from nowhere in particular.

In 1994 my husband, Chuck, and I pulled up stakes and ran away from home.

After a truly difficult year of the exacerbation that led to the diagnosis of MS and the end of my neurosis,  we felt the need to change our air.

I was unable to do a lot of the things that we had done together, Chuck needed to fulfill his desire to return to his familial home. Our children had reached the age of majority and we were afraid that at one, maybe two were going to be permanent residents.

Charles W [Chuck] and I met in early 1970, from the first date were constant companions. We were matched emotionally and mentally. He was divorced and I was divorce and looking for compatible companionship. We found it and joined his five children and my one son into the state of Holy Matrimony. Soon there was a set of twin girls added. Our house was full, and had a revolving door for his children, they came and went on their whim or their mothers whim. This is difficult for any relationship, our was no different. We were committed to each other and we survived the children. If nothing else it drew us closer, we became joined at the hip so to speak.

The years of my neurosis [That was doctor speak for my many undiagnosed symptoms] were trying. I had spent many months with constant headaches working full a full-time job and trying to raise our blended family. There were times of unexplained numbness and extreme fatigue that would come out nowhere and be gone into nowhere just as quickly. I had just about given up and accepted the neurosis explanation, when I  forgot how to walk in a straight line. I even asked the diagnosing neurologist if it was terminal neurosis that I had. He assured me that it was MS and I should just go home and be glad that I wasn’t any worse than I was. Easy for him to say. He got fired right there on the spot. I had lived with these unexplained things since before we buried my mother who died from complications of MS  twenty years earlier. I found a good and sympathetic Neurologist. I’ve kept her for all these years. They tell me MS is not inheritable. Tell that to my daughter that was just diagnosed with MS a few years ago.

Anyway, back to running away. I was not able to do a lot of things that we had spent our married lives doing anymore and moving to Montana was a lot better than staying in the city. He had inherited the childhood home of his mother, the Central Hotel in Radersburg. This was our destination.

The hotel was more a boarding house than a hotel by current standards. It was built in about 1867 of hand hewed logs and grafted scavenged buildings. At one time in the heyday of the mining boom the number of guests was in excess of 20 men. This, in a small 6 room space, and the family of 6 lived there.  The only way I can figure the accommodations working out is that they slept in shifts and shared beds.

We bought an adjacent property, the closed grocery store. We re-opened the store and ran it for 10 years.

In Montana driving long distances is not a problem, everything is a long drive away. The closest gas station is 20 miles away, we did OK until the wild fires of 2000. The fires forced the closure of public lands, this stopped the summer traffic for two summers due to fire danger and smokey conditions. Summer traffic was the mainstay of the business, losing that was more than we could tolerate business wise or financially.

Then, cancer joined our family. Esophageal cancer to be precise. What a terrible disease cancer is. My big strong husband of almost 40 years did not have the strength to  fight this demon. His 6 ft., 200 pound frame dwindled to a frail shadow of his former self,  it took him less than two years to lose the battle.

I am happy that he had the opportunity to make it back to the family home, it is too bad that he didn’t live longer to enjoy more of it.

I took his middle daughter to decorate his grave today [Memorial Day], she will be buried alongside us in the family plot of the pioneer cemetery that is the resting place of two of his aunts, his grandparents, one uncle and his sister and brother-in-law. His niece and great nephews  are talking about sites there also.

I became a widow in a place that I was not native to but allowed me to be part of. I am grateful for their quiet acceptance of this vagabond girl from nowhere in particular. [Born in Utah, left at three weeks of age and lived in the back seat of a car always headed to the next grand adventure]

That was 6 years ago, I am still on the great adventure. I do like where I have ended up. I am looking to see what is in store for this girl from nowhere in particular.