Showing posts with label Sleep. Show all posts
Showing posts with label Sleep. Show all posts

Thursday, February 25, 2016

Rest And Be Thankful... An Update

Photo by David Ralph Johnson
"Rest and be thankful."   ~William Wadsworth

I have so much to be thankful for these days. Even in the midst of all that is going on with me health-wise, there is never a moment that I am not thankful for all that I have. On two separate occasions now, my neurologist as taken the time to ask me how I am doing mentally. It's an odd moment when a doctor gets quiet and asks you if you ever think about harming yourself, if you are ready to "give up". A moment packed full of emotion - alarm, embarrassment, defensiveness, worry, confusion.. But even with all of that going on, there is a clear and very focused "me" that says, "No, it's simply not an option." I'm thankful for that. I'm thankful that even in my darkest moments I long for life. I long for my family and my friends. I long to live my days, my moments with the man that I love with all of my heart. These things keep me moving forward. These are the things I take rest in.

I've not yet taken the time to really let people know what has been going on with me the past few months. I've eluded to it in my blog, on facebook and in messages to friends, but I've not really been too public about the nitty gritty. Not so much because I don't want people to know. More because we (myself and my medical team) really have not known. And until things become clear, I would rather not worry people. But, as is usual with these situations, it seems to be dragging on so I thought this would be a good time to give a bit of an update.

Last September, after tapering for months, I finally made it "off" prednisone. The first time since becoming ill in 2009. It was a horrible tapering with an even worse outcome. But I was determined to see what happened. I was determined to see if my body could figure things out on it's own. I wanted to know if I could "recover". Quite often when going off a medication, there is a period where things get worse before they get better. I wanted to know if this would be the case with steroids. Well, for me, it was not. I ended up creating an inflammation process, a kind of domino effect, where all of my tendons and muscles were affected. Wherever there was a tendon...I had tendonitis. I could barely walk. Then it crept into my muscle tissue, causing some rather serious conditions, mainly in my left shoulder. Of which I have had various treatments that have been unsuccessful.

Then it began to affect me neurologically. My doctors immediately put me on higher doses of chemo and steroids. For those of you who understand the medication regimen, my cocktail consists of Cellcept, Methotrexate, Hydroxycholorquine, Prednisone and a host of other medications for symptomatic treatment. A total of 37 pills a day and weekly injections.

These symptoms are quite frightening. I began having weakness and numbness in both arms and legs. It then moved into my torso and my face. This was also accompanied by extreme nerve pain all over, but especially in my legs. Nerve pain that would immediately wake me up out of a deep sleep or prevent me from sleeping altogether. Some days better than others. Some days difficult to even stand upright. This, combined with all the tendon and muscle pain, the fatigue, the headaches, the GI problems - well, it became overwhelming. That's what led to the hospitalization in January. It is also what kicked off all the extensive testing, of which I am still doing.

The number one suspect - MS. It's not the first time they have suspected this. Over the years I have been tested and the results have been inconclusive. I have had one "bad" spinal tap and two "good", although they have not been completely clean. I have five lesions on my brain that have remained unchanged over the years. My neurological exams have declined and the nerve conduction tests have slightly decreased, with some new issues. But nothing that conclusively says that MS is the culprit.

So this is where I am at right now. My team of doctors are working together to decided who should take the lead at this point. If there is no new diagnosis to be added, then my neurologist does not want to be the one deciding which medication I should be on. They all agree that something needs to change. The problem with that is that any "new" medication is going to be quite risky for me. It's a step up (or down, depending on how you look at it) on the scale of possible negative side effects and complications. They're just more dangerous to my already compromised immune system.

I'm still in a holding pattern. Things got a bit delayed the past two weeks when my rheumatologist got ill and was out for two weeks. My team has been good to communicate with me every few days, for that I am extremely thankful. It makes a huge difference to know I'm not lost on the radar. There have also been a number of other things that have kept me going during this time.


And...then there is YOU. My family and friends. Those near and those far who have continually checked up on me. Those of you who have "liked" my posts on facebook, commented on my artwork, BOUGHT my artwork, sent me messages and cards, stopped by for visits and basically supported me every step of the way. For me, oftentimes captive to these four walls, this outpouring of kindness has literally been what brings me through each day.

I am so thankful for you. I hope you know that. I hope you know how important you are to me and how much I cherish your friendship and care of me. I was completely bewildered (and overjoyed) by your response to my need for a new bed. Within less than a month, my dream became a reality because of you. And let me tell you, I could write another thousand words about how helpful this new bed is. Immediately I noticed a change. Immediately I was able to get more hours of restful sleep. Immediately I noticed a difference in my waking hours because of that sleep. All because of the compassion of family and friends. You purchased my artwork and in turn, you gave me rest. What a beautiful thing. Truly, truly beautiful and I thank you with all of my heart.

This has been a tough one, that's for sure. And where I go from here is a somewhat worrisome for me. But this I know - I can do anything with my family and friends beside me. To really know that you are there.

This I take rest in.




Wednesday, April 18, 2012

What I Wish I'd Said...

View from the couch.

Today is “one of those days”. Seems I’ve been having quite a few of those days in a row here lately. I’ve been seeing a physical therapist for some neck and back issues as of late. So at least I have a few new techniques in that area that give me some relief. But overall, the body simply is not cooperating. Joint pain that feels like it’s connecting the joints in my entire body like some sort of electrical “connect the dots”, completing a circuit that makes me feel like I’m on fire.  Add a little neurological numbness and I’m pretty much a bumbling lethargic mess! Oh….and did I mention GI issues that make whatever I put in my mouth feel like a game of Russian roulette?  I think you get the picture.

So after seeing my family off for the day, I decided there would be no denying this one. I unplugged the land line, put my cell phone on vibrate and hid it under a pillow in the other room (not really sure why I didn’t just shut it off…maybe I’m into the drama of it all?) and curled up on the couch. I avoid the bed during the days when I really need to sleep because Maggie, our biggest dog, will not attempt to sleep with me on the couch, and I really did not want to be disturbed. I have a tendency to sleep very lightly during the day, which can be frustrating.

I’m awake to report that I slept very soundly. From 9am to 11:30, I was completely out! In fact, I had a couple of those kinds of dreams where I tried to wake up and just could not move.  It felt good.  As I lay there slowly waking up, I began to think about a friend that had recently contacted me via email in regards to the frustrations she has been feeling because of her illness. Not feeling so well myself here as of late, my response was caring, but brief. There was a lot I wanted to say, but could not muster up the energy.  So in my waking, I thought about those things that I wished I would have said.

In her note, she made this comment, “There are days when I feel like life is just passing me by…” If I could pick out one fear that was most prevalent in my thinking the first two years of my illness, this was it. Life was literally passing me by, and it scared me to death. I was on long term disability, but still officially an employee of the Department of Human Services, and I felt that each passing second put me further out of touch from the job that I loved.  It just so happened that all my dearest friends were also my coworkers. Over an hour away and into the city, I worried that the distance would slowly take the dearest people from my life.  Not being able to hold a paint brush, I panicked that the talent I had worked so long to perfect would no longer be a gift I held. My children were either relying on the other adults in their life or fending for themselves. New things were being learned out there, my friends were going on retreats without me, my children no longer depended on me…life was passing me by. I lay there in my hospital room day after day begging for things to end, worrying that if I did not get over this illness I would never know happiness – real happiness – again. This was not the life I intended.

So now, here I lay, almost four years later. In the quiet of my home, sun breaking through the clouds, feeling really, really sick and I am completely at peace. And I think about what has gone on in my life between those days of endless worry and fear and these peace filled moments.  In some ways I’ve gotten better physically. I’m not nearly in the hospital as much. In other ways, I’ve gotten worse. I’ve added two new conditions and host of new symptoms. I’ve also had a major heart surgery that didn’t go so well.  The physical therapy I am receiving is to help me deal with issues that will never go away, in fact, they will only get worse.

But I love my life. This life.

You see, I felt as though my life were passing me by because I thought I knew what my life looked like. So if I’m not living that life, then I must be missing it.

I think that from a very young age we start to put together, piece by piece, the structure that we believe makes up a happy life. A long list of what is acceptable and what is not. These are good things…these are bad things. We label, we sort, and we check them off. One by one, creating the life that we believe makes us happy.  One by one, creating a picture of ourselves, building our preconceived egos.

I remember the moment I spoke to my boss on the phone, agreeing that the time had come for me to give up my position. A career I dearly loved.  A group of people that had become my closest friends. A future I built my dreams on.  A financial security my family depended on. The only analogy that even came close to what I was feeling during those days was the analogy of stepping off a cliff with the ridiculous hope that something would magically appear out of thin air and catch me. The kind of stuff you only see in cartoons.  A far cry from reality.

I didn’t realize it then, but in those moments of stepping off that cliff, I had begun the long journey of learning how to let go. Sometimes we hold so tightly to the list that we fail to see the reality that is before us. We spend our days forcing a round peg into a hole that does not even exist anymore. Life is continually changing. Every second there is a new you – based on what is happening right here, right now.  We have a choice. We can either listen to what the present moment is telling us or we can fight against it, holding on to our list as if they can save us, forcing our pegs into holes that no longer exist.

Or…we can learn to listen.

Listening to the present moment does not mean giving up. It does not mean letting go of things that can really make you happy and settling for second best. It means listening to your reality and opening up your life to endless possibilities. The potential and paths to happiness  - to true inner peace – that you never even knew existed.

Look at it this way. Last week my car was making an odd sound that made me feel quite uncomfortable to drive. My husband did a great deal of research and found out that the sound was due to bad bearings in the front driver’s side tire. He took the wheel apart, bought the tools and parts needed, put things back together and the sound disappeared. I now drive in comfort, content in the knowing that fixing the bearing made me feel better. Now let’s say that next week when I am driving the car I hear another odd sound. In my mind, I know what makes me feel better. So I ask my husband to please fix the front driver’s side wheel bearings…again. No need to do any research, I know what the problem is, and I know what makes me feel more comfortable driving.

Sound silly? Yes! In fact, it sounds a little unsafe. But how often we do this in our very lives! In the case of the car, we are more than willing to think things like – chances this is the same issue are pretty slim, I better see what else might have changed – or, it’s winter time now, maybe the cold has had some sort of impact – or, maybe the car is getting old and certain things go wrong as a car ages – the list is really endless because time changes things. And what made things comfortable in the past may not necessarily work today.  If we fail to listen to reality, then the car may never work well again.

The same goes for you and I. If we fail to listen to the present moment, we won’t know the truth of the matter if it comes knocking at our very door.

Today was just one of those days. I knew it when I woke up and I listened to my body. I understand that we do not all have the opportunity to listen so carefully and respond so appropriately. I can’t even most of the time. Family responsibilities, doctor’s appointments, new grandbabies…they all push caring for myself aside at times.  But the longer I deny my truth, the more uneasy and less peaceful life becomes. And if I deny it long enough, the consequences can be life threatening.

By listening to what this moment brings, by living my life open to change and letting go of my assumptions of happiness, I find myself in a quiet place of peace. Knowing that having compassion for myself is the greatest gift I can give – to me and to those I love.  And in the end, I find a contentment that, quite often, just makes me happy. 

Wednesday, April 4, 2012

When Sleep Eludes Me

Sleep never comes very easily for me, but some nights are just worse than others.  I find that if I can keep my mind clear of stories (“What am I going to do? I can’t do this anymore! How will I function tomorrow? I’m never going to get any sleep…”) I do much better.  Letting go of the pressure I put on myself, I often just fall asleep. And then there are nights like last night, where the normal inability to sleep is compounded by an upcoming event that is causing me to be anxious.  Left unchecked, I can create the most miserable of nights!

This morning, after a cup of coffee and some moments of quiet, I have had time to think back on the drama of my sleep…or the lack thereof. In my daily reading, author Mark Nepo talked about the causes of why we hurt ourselves and those around us.  There are obviously many causes, but this quote resonated deeply within me,
“For it is out of fear that we feel the need to isolate ourselves or to control others, and it is often in the act of elevating ourselves that we hurt one another, not to mention ourselves. When not afraid, when in a moment of peace, we feel quite a different need. We feel a sudden requirement to connect and belong to other living things, and it is then in an act of true embrace that we love one another.”
Last night, during the hours in which I should have been sleeping, I spent a lot of time in fear. Fear that created feelings of inadequacy, fear that created the desire to control certain situations in my life, fear that made my heart race and left me in the constant hum of panic.  Fear that created an environment impossible for sleep and eventually gave me a very painful headache.

I can tell you, that in this picture, I was in a complete moment of peace.  Nature does this to me. Whether I am standing in the ocean, walking in the forest or sitting at the edge of a field – I DO feel the sudden requirement to connect and belong, and this connection always creates intense moments of love for the world around me and all those in it.

What I fail to recognize in the moments when my mind is left unchecked is that those opportunities for peace are available to me EVEN within the darkest of nights. Even in those moments of restlessness and pain. Even when events are beyond my control! This morning, after reading the quote, I was finally able to let go of my fear.  And in that letting go, I no longer feel inadequate; I no longer need to control the upcoming circumstances…I no longer feel threatened.  Those that seemed against me now are the recipients of my desire to connect and to love.

How much better this feels! How much relief is mine in the letting go! How much better it is to love than to fear!!

Success will not always be mine. I’m sure that in the zone of half asleep and half awake, I will succumb to the craziness of my fears yet again. But it’s not about perfection, is it? It’s about learning from our mistakes, forgiving and loving. And this we can do at any moment we choose, in any space we find ourselves and with anyone. 

Blessed moments of peace be yours.