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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Do you know your Vitamin D?

I just read an article about Vitamin D. My niece a cancer survivor visited with her cancer doctor and he told her that she had extremely low Vitamin D levels. That could be the explanation for some of her symptoms.

I am aware of the need of sufficient Vitamin D  and the role it plays in Osteoporosis. I read the speculation on MS and Vitamin D. Multiple Sclerosis is more frequent in the northern tier of the earth where there is seasonally limited  sunshine, thereby a lack of Vitamin D.

I do have Osteoporosis. My osteoporosis is a consequence of living past menopause, not being physically active for many years due to Multiple Sclerosis [MS] and some things beyond my control. I take Vitamin D and Boneva for osteoporosis, my doctor says I am on the low-end of normal. That is a norm for me, I am on the low-end of normal in a lot of things.

This article says irritability is a symptom of Vitamin D deficiency, that would explain some things.  I have been like a bear  the last while, I am always growling about something. depression and anxiety are listed as a symptoms.

Many people who are deficient in vitamin D said that in the beginning, they thought their anxiety was caused by something else. Many of these people have been trying to treat depression and/or anxiety with antidepressants and other medications, but it turned out to be unsuccessful. In other words, if your mood problems are caused by vitamin D deficiency, the only way to treat these issues is to treat vitamin D deficiency first.    vitaminddeficiencysymptomsguide

 I have SAD [Seasonal Affect Disorder]. I need to be in the sun for my mental health and for the well-being of those around me. I live in Montana, the winters here are long. Not so dark, just too cold to play outside much. If I don’t have a sunny window I can sit in, then ………….BEWARE.  So I chalk my grumpiness to SAD, maybe it’s tied to both. Because I am a survivor of menopause and don’t make the Vitamin D like I used to and I am on the low-end of normal, Vitamin D deficiency could be the culprit. Then, because I don’t get out in the sun enough, my SAD could be the culprit. Maybe it is a destructive combination of the two. I have to explore this with the neurologist when I see her again.
With the concerns of skin cancer, there is a high use of sun block it even comes in clothes. With all of this sun blocking is there a decrease in the Vitamin D available to us? I can’t help but wonder. Are there more reports of diseases that are linked to Vitamin D deficiency? I would guess so.

Vitamin D is very important for overall health. It takes part in several important processes that take place in the body, some of which are closely related to the immune system. Numerous researches have proven that vitamin D is helpful in preventing diabetes, multiple sclerosis, cardiovascular disease, rickets, osteoporosis, osteomalacia, and certain types of cancer. It is also used as a part of therapy in patients who suffer from these problems.     vitaminddeficiencysymptomsguide

There are many things cited in this article including muscle cramps and fatigue, diabetes and cancer to weight retention.  Check your symptoms and check your Vitamin D.

http://www.vitaminddeficiencysymptomsguide.com/

I knew there was a word for it!

I knew there was a word for it.

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I was browsing this morning and found this blog.  http://fixmsnow.wordpress.com/2013/03/15/my-mid-ms-crisis/

There the word was, the one that I had been trying to find. There isn’t a decent one in the dictionary, at least that comes close to describing the crushing fatigues that MS brings with it. When you say ” I’m tired”. The response I have always received is something to the effect of “go lay down for a while” or “you will feel better after a good night sleep.

Unless you have been here you can’t understand that even your cells are exhausted. It is difficult to smile, engage in conversation or even to have an independent thought. It takes far too much energy.

My niece that has a heart condition stemming from the aggressive chemo that saved her life 20 years ago, has these episodes when her heart function is low or disrupted. She understands and does not try to be “helpful”.  She just agrees that it is the shits. If one weren’t so tired they would give one anyway

MS just installs this part and parcel into the body and mind.

It is too bad that there have been no words to describe this total lack of energy. Now there is a word that will have to do til another comes along. This one says it all.

We develop strategies  to accomplish what we want. We just keep plugging along, trying to not totally disappear into the background.

I will keep doing what I have to to to keep going. Today it will be to make bread and go putter in the sunshine. I have a LOT to do.

Now I’m tired again.

What makes me mis-a-tick

I opened the New Post window and had a brain fart. My brain was empty. I clicked on the link for inspiration. Here is what I saw.

What was the one experience that completely changed your life? What happened? How did it change your life?

Here is what spilled out of my brain.

In 1993 I was working as Office/Credit Manager at a floor covering company in Utah. I had been battling month-long headaches and believed that stress was at the root.

I was the mother and step-mother of 8 children, ours was a blended family. The range in ages was, in 1993, 37 to 22. We had stepped into grand-parenthood reluctantly but were enjoying them. It is hard to say we were ecstatic for grandchildren because their parents chose to put the cart before the horse, so to speak. Now, it is acceptable, it is almost expected. kind of like trying on a pair of shoes for a month or so, if they pinch – give them back. You are left with the blisters but they soon pop.

I went to work one morning, the weather had started to break and spring was in the air. I hadn’t been feeling up to par, no headache this time, I chalked it up to spring fever. Mid morning I had to go out into the warehouse to clarify something with the warehouse workers. I ran into the corner of my desk….. muttering something, I’m sure was proclaiming doom from on-hi for the desk…. I went on toward the warehouse. Just a few steps later, I tripped. Then my vision tightened and I could not stand. I don’t remember how I got home, but I did.

A call to my neurologist , that had been treating me for headaches and occipital neuritis before an insurance change, resulted in he would not see me because the insurance would not pay him. He referred me to another neurologist that would do a MRI the next day.

Sitting in the waiting room after the reading of the MRI was tortuous. Chuck, my husband of 20 plus years did not accompany me in to the exam room. This was his nature. He would go with me to all important doctor visits, just not go into the exam room. As I sat there waiting for the doctor to make his appearance, I was trying to put a name on this thing. I had strange little problems that I had taken to the doctors for years. I had been declared a neurotic house wife and I wondered if my neurosis had finally taken me to places that I didn’t want to go. I just fired the doctors that told me I was neurotic and would not go back to one til something else happened. I did have a doctor for a bad case of tonsillitis few years before and I had a tumor taken off my thyroid a few years before that. I didn’t do without doctors when I needed them.

I remember telling a friend that I hoped the tumor was causing the constant fatigue, I was tired of being tired. It didn’t work, I was still exhausted. Chuck and I went to Disney World, I couldn’t keep up with him. I have very few actual memories of that trip, except the fatigue.

When the doctor did come in, he was grim. I didn’t fear what he had to say, I wanted to know what it was. If it does not have a name, it can’t be fought.

Multiple Sclerosis!!! “go home and be happy that you are not any worse off. There is nothing that we can do for it”

I walked out of that room and told Chuck what the doctor said. That was the longest walk back to the car and drive home. It was SILENT. Each of us lost in our own fears.

We had buried my mother after she died from complications of Multiple Sclerosis twenty years before. She basically asphyxiated on her supper. Was this my fate?

Multiple Sclerosis is not contagious. It doesn’t run in families. We don’t know what causes it, we can’t treat it, just go home and expect to die of choking on my supper like she did.

I fired that doctor!

I found another neurologist, a young woman who sat and listened to my tearful story. She did not doom me to just waste away with a disease that they couldn’t treat. She offered some hope. Slim, but hope nonetheless  First I wasn’t going to die from this disease, few people do. I was going to get sick like every one else. MS as she called it, was a very difficult disease. It wasn’t a death sentence. There is a lot of research, they are getting close to some treatments. The heat could impact it severely, stress has an impact. Don’t let it get the best of you. But. I probably would graduate from relapsing remitting to secondary progressive over time and a wheel chair would be in my future.

I still had the picture of mother gone at 39, choking on her supper.

We had a lot of things to do yet. Our kids were finally raised, Chuck was looking at retirement. We were going to enjoy the rest of our lives in relevant freedom from the everyday expectations of a growing family and jobs. We had just bought a lot in LaVerkin, Utah. We needed to do things.

There goes our retirement to Southern Utah where the temperatures reach the 100 pluses most of the summer. I would be doomed to live in the cold and snow forever.

Then…… the other shoe dropped.

I woke up a week or so later and was so nauseous that I could not stand without vomiting. Vertigo! Then the tremors, first my head then my hand. I could not stop them. I could not drive my stick shift car, I could not drive period. Then the double vision. Then the sensitivity to changes in pressure in the inner ear that would cause excruciating pain.

I did not return to work, I couldn’t make sense of the written word. I was working with numbers, a lot of them. Numbers were a mystery.

I couldn’t walk for more than a few hundred feet at a time. Shopping for groceries was next to impossible. I knew I was through with life as I knew it.

Fast forward 20 years.

Well, I didn’t choke on my supper. I was in a wheel chair occasionally when needed.  It took several years to get to a place that I could control my body enough to function.  A few doses of prednisone at the right time allowed me to continue living well. I am absolutely still relapsing/remitting. I still do not work at a paying job, it is hard to focus for long periods of time. I fatigue easily and have to measure my activities according to my energy level. I go for days or months being able to do more, then inexplicably I can’t seem to gather my thoughts in on place. There are still days that I cannot reconcile my self with life and I get grumpy. Like most conditions of the brain, there are days that I have trouble with my emotions. I don’t have the ability to shake everything off like I used to. Some of that might be that I am getting older and less flexible.

My husband of 38 years succumbed to esophageal cancer in 2007 and I have found another relationship.  He has a friend with MS that is in a wheel chair now,  another friend’s wife has MS and has visible signs of her disability.  He is aware of the possibilities, but he is not able to understand what the effects will be if I have another exacerbation until it happens.  A few years ago MS took the majority of vision in one eye and fogs the other occasionally. It is frustrating, but, I will keep doing what I can for as long as I can.

My daughter and my step-granddaugher have been diagnosed with MS. So much for the “it doesn’t run in families” theroy. I can’t take the injections that are currently available, I couldn’t afford them if I could.

Every day is a challenge, every day is a gift. My life will go on and I will still battle till I can’t any longer. MS was not a death sentence, it was a reminder of my fragility. I have a cane that I can get to when I need it, the wheel chair is in the basement ready to serve me if the time comes again. Meanwhile, if you find me clinging to the wall or I don’t seem to remember who you are, just excuse my fragility and come talk to me.