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Living cat naps

It used to worry me that my sleep is SO choppy.  All the recent articles on the subject of sleep say we need to sleep undisrupted for a night’s sleep to get the most benefit from it.  This is something I have not been good at the many decades. Now more than ever this is the case.

I have nearly all my life had to waken during the night to relieve myself. Since the effect of this disease on the urinary track. these bathroom trips have become longer. Never easy when it becomes an issue to try to empty, get done and on your way back to bed realize you really haven’t emptied completely so back you go,

In fairness I suppose I should explain something else.While during the day, I can fall asleep during a conversation (Yes, when I am talking!) or with the laptop on my lap, at nighttime, I have restless leg syndrome. For those who have not experienced this, I pray you never do. It begins as a tension in the legs. It escalates  and exactly as it sounds makes you feel you MUST get up and move around. While moving around, the sensation lessons, but seems to recur once that movement stops. For me the feeling also is felt in my arms and my torso and neck. It is an awful feeling that might best be described as leaving me wanting to climb out of my skin. I have used medication which lessened the intensity early on. But didn’t solve it and seem to have lost the effectiveness in time. I used TENS machine, Lidocaine patches, ice packs, baths, showers, exercise before bedtime, and of late exercise while it occurs. i am not sure how, whether the expenditure of energy or the improved circulation from exercising, but this does help to release some of that muscle tension.

Last night I went to bed, truly tired, sleepy. My neck and spine pain had worn me out. Yes I had taken my pain med . First the 4 dogs took turns barking to go out- separately of course.  Add to that a couple of extra trips for myself. Eventually this would repeat a couple of times. Returning to bed each time, it was becoming more clear that this horrible feeling just kept escalating. I tried meditation as well there medication. The torture continued bringing with it a bit of increased anxiety. So out of bed for myself this time. Got on my stationary bike. Now usually  I would turn on a light bright enough to clock myself or keep track of distance. For whatever reason I just got on with a dim light on in the room. I honestly don’t know how long or how far I went on the bike. I just went on it, not working up a sweat but going until muscles were tired out. Not thoroughly exhausted as I didn’t want the muscle spasms to come. Nor did I want to have the burst of energy that can come from a strong workout.

Did it work? It worked well enough. I did go to sleep less tortured. It isn’t easy adjusting to sleep interruption. Much of my life I have lived with it. Trouble falling asleep, trouble staying asleep, and waking in the middle of the night (3 AM almost like clockwork) unable to fall back to sleep until nearly time to get up. I used to hate it all. Now I find myself trying to appreciate anytime I am awake and aware of my surroundings and of the people I love. Of course there are those times when I have been SO exhausted that it nearly brought me to tears to have to get out of bed. But when that comes over me, I begin to count my blessings.In the end what isn’t better by counting our blessings? I remember Bing Crosby singing that song in one of his musicals…White Christmas or one of those holiday movies about the quartet forming an act to save the old colonel’s (or general??) resort in Vermont?  It is an embracing warm innocent thing to do. It re-alligns our perspective. It keeps us in check in prioritizing.

DO I wish I did not have this condition to live with? Of course I’d rather be living a life of my choosing, but I can’t say that my life has less quality in terms of what it has made me aware of, what I have learned. See there comes a point of a totally naked brutal honesty that comes when you deal with a chronic health issue. You can’t fool yourself forever. Eventually life says : Not one more step, not one more word until you find how you are going to handle this. As much as there are days I want to hide away and pull the dirt over me, But there is just too much living to be done than to let that retreat happen.

Living fully requires every access to the knowledge learned from previous experiences as it is within those experiences lies our preparation for what happens today and tomorrow. SO embrace the solutions or the actions that lessen the weight of your burden. DO not be so arrogant as to refuse help when needed. DO not be afraid of what tomorrow brings, know it or not you’ve been groomed for it. And never be afraid to turn to the higher powers that be. It’s odd how in times past people were badgered for not being faithful people. Then it became not cool and uneducated to have a faith and belief you walk in. Well, Regardless of what the world believes I belief in a higher being, who put together the perfect way for us all to find forgiveness for our sins and to turn to inner strength to gather more enlightenment in strength  and courage.  I am not ashamed of my beliefs. I am not ashamed of my faith. AS a nurse I had seen much over the years…and as a patient have seen more. There are things that occur that are not things that can be logically scientifically explained. Some call these occurrences miracles. Others say they’re rare but but explainable if one considers the possibilities. I can tell you though there are things that defy definition- that is all. There is no shame in admitting that when you see it.

In finding a neurologist, we have to accept our roles in the getting an accurate perspective about what we face , what is available for help, and what we choose to do about our deficits.  When I finally found a neurologist,  I thought this would be my neurologist for life or nearly so. That turned out to be pitifully inaccurate. From what I have been told, this is not unusual. Many people will have a number of neurologists as well as other kinds of specialists. When dealing with a chronic illness, you find out how you are doing as a patient, as a former nurse. It isn’t a better life . But a life worth reading requires someone write down that story… or share it by the spoken word.

I found out that our personal heroes, are often those people we would like to emulate. Often the biggest difference between our heroes and ourselves is the initiative necessary to accomplish something for someone else. the allowances we make for ourselves must be measured against the excuses people so often give to get out of something. Sometimes we are just too exhausted. Often we are feeling overwhelmed when it comes to any venture that brings us closer to nature. We say that we don’t have time. We say there are organizations already doing something that we think of as being helpful. Sometimes it is pride that keep people barricading themselves from the use of something meant to simplify our lives. but eventually I tire reading my excuses, my reasons for not diving into a project that might help myself and/or others.

I have always held those who go out and take a morning swim early in the day, alone. There is something uplifting about taking on the challenge first thing in the day. You come out of it feeling invigorated. At least that’s how I felt when I have done it. Perhaps a new summer plan.

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memories falling with the Snow

Besides the wonderland of vision the snow paints, what is it about the magic it brings, especially to the holiday season?
As a child I think so much of it lay in the activities it meant for me, the outdoor activities. Not much could compare to the peace and thrills of ice skating, of sledding, tobogganing, of skiing. And in mentioning these activities, I should clarify that my family could never have afforded the resorts…no these activities were on local ponds and on hills in the countryside (my uncle’s farm, in his fields and on his pond as well as local in town places). Back then plowing didn’t mean scraping down to the road’s surface. There was always a bit of surface covering the roads and with so little traffic, some sledding was right on Main St. And the walks…nothing like a walk in the midst of a beautiful snowfall.
today memories take me back to a time when I read a good book, finished a paper for school and was surprised by a visit from a friend from school. lol These were the days of navy P coats and midi-camel hair ones. My hand me down from a rummage sale- one of many in our town. It felt so warm and cozy. And with this special friend with me what could have been better? We could talk about anything and pretty much did. Of course playful undertones. My heart pounded so loudly I was sure he could hear it. It was a magical evening of innocent joy- with the white crocheted hat and my mittens all smelling of the wet yard as the snowflakes wetted my nose and yes, my eyelashes. This really was and is one of my favorite things. As are the rest of those things in that song! I visit such times when the day beckons me and wonder if I am alone in the memories. It really was life times ago. But is as tender and sweet…bittersweet for being so very far ago and for pathways that have parted. So many smiles, joys, and tears between then and now. These memories are those mellowed and treasured in my mind.

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Been away too long. No excuses only my apology. Truth be told I have been wrestling with a depression born out of the complication from a drug meant to help with ms.  It didn’t. In fact I filled with fluid to the point of respiratory challenge and bizarre BP fluctuations.. At any rate a brief hospitalization put me on a treatment regiment. The issues continue and that’s the short view of recent life here.

My husband arranged for us to go to his uncle’s cottage to join his family for the Fourth of July. I admit I had mixed feelings about it as I have felt all in all crappy. I really didn’t want to be a downer for Ken or for anyone and the fear of crashing meant that could be a strong possibility. But you get so much time, so many  I was going to have when I think of those things opportunities in life… and this was not going to be a regret at the end of my journey. I was going to look back with pride and joy I could find my own little piece of  today!

For days I thought about how I wanted to go for an early morning walk, a kayak ride…but my legs continued to give me a challenge to be able to walk with crutches. This kind of reminder was like a punch in the gut. I would find a way. The RLS was coupling with the paresthesia, and the multiple sclerosis was wreaking havoc in nearly every system it could. My eyes worsened and hand eye coordination was failing with the loss of those movements .I  only imagine this trip as I once was. We had stayed this day, limiting our ventures to on land things- except for a few speedboat rides to pull tubes and the riders determined to hold on. Finally it struck me. I could try it at the very least. I hadn’t swam in over a decade  or nearly so… let alone diving…but that was not even being considered at that point.  Waiting for my husband who was involved in the bocce games, I determined it just was not to be today. After all he rarely got up to New  England to hang with his relatives and play bocce. I was not going to be the wet blanket- but I had absorbed enough sun and wind so I went into the house to get dressed. This was not an easy task at this point. My joints were stiffening, my bones aching and my muscles which were quite spastic were becoming more flaccid and weakened. It was like warring with myself in order to navigate my body out of the clothes I had on and into the clothes that now looked so comfortable. Finally finished I came out and heard my husband ask me if I was coming swimming with him. I thought about how comfortable I was at this moment and nearly said no. Although I knew if I didn’t go for it, it would not be ms keeping me from enjoying a swim today, it would be me who had. And if this was the last time to attempt such a task, it was me who decided that I could not do it from whenever it was I had years ago. If we choose not to live with intention, with gusto, with purpose, with the full measure of enjoyment and fulfillment at our avail, then it is us who have already written ourselves off of the pages of life. Instead I changed and went with him. I cannot believe how close I came to missing this moment.

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The writing stopped…it seems as though life had slowed to a grueling number of hours each day. when thoughts danced through my brain.  Somewhere between the calculated exercise program and the sleep that still alludes me laid my future. Yes it was…no, it is even to this day. What strikes me as strange about the process is how you can toil and push, keep climbing only to get to a place with a different view. Sure It may be more economically sound to have ridden out the rough times and keep my head in the game. But that would not have been me at that time in my life. Why is it that everyone else seem to think that a regularly attended exercise  program ought to have me looking fine in no time. Well , that doesn’t seem to be in reach.

 

Thoughts of actually coming to a decision regarding my health insurance teased and tormented me for months. So today, now begins the slow process of advancement in my enjoying a purposeful life. Sure it’s a challenge that I readily accepted initially. Now though it’s more clear that I would want to be over this part of my recovery. Everyone wanted to ask but were to afraid to ask…somehow for all of the sorrow, grief for the losses (And why the wait

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The Rise

To everything it seems, there is  a smooth time and a rough time. It’s that way in recovery of any sort. Growth is that way, as well. These thoughts visit me so often probably because of the ways I am healing, growing. There is something about being in your 60s… don’t let anyone tell you different. It isn’t all doom and gloom. But it makes you take heed of all you thought about life at that age.

In truth, I feel much younger. Sixty being the new forty sounds pretty good to me. I was looking back over some old photographs of some family members when it occurred to me that while my mom looked older than I do at this age,  she still was very much alive and experiencing life as she might never have were it not for a number of events and people in her life playing the roles they did. Still she managed to do this in a time where that was not thought of much. SO today I have placed myself into a dress, a beautiful  dress I have worn on vacation. You know what I mean. It has a beautiful pink and white flowery pattern floor length. It was given to me by my youngest, my younger daughter. It would be perfect for a walk on the beach. But at this point that is highly unlikely.  A number of recoveries to hurdle first I suppose. She is  far away with her work but I feel her right here when I wear this. And somehow those rolling waves sound closer to my ears while I look into our above ground pool. It isn’t rocket science. People have dressed up or in a certain manner to feel better about themselves. This is not so different. I miss living near the beach. I always thought I’d get back there but here I am in the mountains of PA. There may be better places and there are surely worse. SO while this terrible nerve pain throttles my body right down to my soul, this has been a few moments of distraction perhaps to some. To me it felt more like a focus. I suppose it all depends on one’s perspective. And in that perspective lies a whole universe to explore. This day has been a rise.

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Happening to me?

There are a number of times I remember thinking or saying that.   I remember thinking I had just thought it out loud, so to speak. Sometime it was said in celebratory disbelief at the accomplishment . Other times it was crack in time  and not the best champions coming forward. Pretty forward and that much harder to ci== Do doctors even read these at the tablef Takle  Iotn      tAD     AH THAT’S IT. oNE TOO MANY BOTT  UGH!!! idk HOW THIS HAPPENS. aNY OLD KEYS TYPING IN. cAPS LOCK OFF THEN ON. sTRANGE SOUND.GOODNESS why does it have to be like this? It’s okay- I get it, life is hard. It is supposed to be. And I like a challenge. But this marathon just doesn’t end. No really, it goes on and on. There are the physical incoordinations, stumblings and falls, the  cost of doing various things that felt so good during them but after sitting down that huge cloud  usually just saved for my vision- literally.boring, jjjjjjj  Just like that- a lost random thing somesou set lose in my mind lets it flow right out of my hands andbefore I know it there are letters that don’t make words- just assorted  letters typed out next to each other posing as a word. ugh. The thought in my head never having made it out for whater new word applies. I get lost in what I want to say- whether writing or speaking. That is infuriating. Happens when I speak too. I’ll be having a conversation and a string of disconnected words or phrases hop out of my mouth before I can edit them out. And they aren’t even related to the topic- not remotely.. This is very embarassing and impossible to cover up. Then people are looking at me as I must have lost my mind.They may not be far off on that one.

 

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Seems to me…

In all of this I never was so surprised as to have thought that anything was so unexpected… and yet in a sense it all has been. It is true that with age, time goes much more wwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwww oops nodded off again. There you go that’s unexpected by me. Ha! Unless you’re my husband waiting again for the rest of the thought and knowing that once sleep even in its briefest form touched my brain the slate would be yet again clear of any hope to recover the subject. The words jam up tripping over eachother  in an frantic attempt to be heard before there is no chance.

I’m told the good thing is that from here on out things just gradually slide downhill – with fewer dramatic plunges left to recover from. The bad news is there is no effective  meds at this stage with the praised laurels others receive. That’s okay. I did my part in providing information by trying that  medication. It hadn’t gone as hoped. And now I am through with it. This will be an opinion to be contended with. But it is what it is. It is as it is. I did try to change that. Now it will become someone else’s  mirror. Mine had shattered and is reforming. New horizons or a new view. A new day awaits and I will not keep time at its feet. I will march along to the music in my heart… it is the one that has to matter most .  Tomorrow  a pricking , a reminder that it isn’t ongoing, that this life is finite and t I will  climb the hills to my best of ability.  There really is very little bu Just help me keep my head above. I’m told that all that is  as it is meant to be,  To a better morrow.                                                                                                                                                    this                                                                                                                                                                                                                                                                                                                                                                                                                                             Rejoice in this day                                                                                                                                                                                                                Celebrate the gifts and the struggles…therein lies your character and there  in lies your peace.

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