I’m sitting here noticing that I need to clean my keyboard. I can do that! I focus on what I can do and not on what I can’t do. If I sat around bemoaning all the things that I can’t do, just give me a shovel so that I can dig a hole six feet deep that I can crawl into. Only problem would be is how would I get the dirt filled up after I’m in the hole. That I can’t do.
Living with Multiple Sclerosis is not a death sentence. It is not something to despair over. It can lead to a shorter life depending on the type of MS one has, and actually; it may lead to a shorter life for those with other variables of MS, but not by much.
What is significant about MS/Multiple Sclerosis, is all the things we can’t do as time goes by. You don’t get a diagnosis of MS and all of a sudden you are bedridden or significantly impacted in an obvious way. Many people have MS and still work. Many people, inclusive of those I know; you would never be able to tell they have the disease. Many people, including myself, have advanced into severity but still go on taking care of the house and other activities like yard work, etc.
Let me show you an example.
I started this pond last year. My husband dug out the slate for me and put them in piles around the hole that I dug. My husband helped define the hole for me.
This was my baby. It was something I wanted to do on my own so that I could feel a sense of accomplishment. It was something I could do. It took me nearly two years to do it, but I did it. I carried each one of those rocks from one part of our very large yard to the pond. Along the way, there were things I couldn’t do, and I gladly turned it over to my husband. Although he was very concerned about my falling, which I did often, he left me alone when I wanted to do it alone. He did put his foot down a few times and insisted I come into the house but he balanced his concern with my determination to do this.
It wasn’t easy. It took forever and many small steps to carry stones. I couldn’t use a big cart so I piled rocks into my shirt and carried them that way across the yard. I averaged about three trips in an hour and the rest of the time, I laid the rocks into position. I still have a ton of rocks to go, but at least it looks like a pond.
There were many falls, one where I had to lay there a couple of hours before help came along. It was okay. I turned over on my back, watched the clouds and made up a melody in my head. When I was asked how long I had been laying there, I white lied. What would be the point in worrying anyone when I was hurting? The hurt did not come from the fall but from my legs, which started last year.
At that time I thought that perhaps my legs hurt because I wasn’t doing enough on my legs. I wanted to work them out. It didn’t work.
I focused not on building the pond, but on picking up a rock, putting it in my shirt, then picking up the next rock, and so forth. Then I focused on the long walk back to the pond, or at least it seemed like a couple of miles.
The pond was the ultimate goal but the pond gets built by a lot of small steps. I focused on those small steps and broke those small steps even further. I landed up with mini steps. Those I could do even if it took me all day to do what someone else could do in one hour.
This past weekend, I was like a child excited about going to a candy store. We went to the pond store where I purchased six Koi fish. I tried fish last year, but the pond’s habitat wasn’t mature enough. I waited a lot longer before I finally deemed the pond habitable for fish.
My Take on This
Multiple Sclerosis is a disease that when you first hear the diagnosis your head spins with envisioning the changes that will happen in your life. Yes, they are disturbing and yes, it seems calamitous. It leads, for many of us, to debilitating lifestyle changes…gradually unless you Progressive MS.
I’ve had MS for 30 years, if not longer. I still work around the house and in my yard. I still walk with a cane or walker. I am using my wheelchair a lot more frequently these days. I have more than likely moved into progressive but I’m not asking if I have. I don’t care to know. It’s enough knowing that I have Congestive Heart Failure now. That is something to worry about. I’m trying not to. The prognosis for that is about five to ten years, but my internist said he knows of some who have lived longer.
If one thing doesn’t get you, something else will. It’s the nature of life. We all die.
It’s how we live that’s important. It’s what we leave behind that counts. We live on with the memories we gift people. I concentrate on quality not quantity. I concentrate on embracing the difficulties of the day not on defending myself from those difficulties.
Multiple Sclerosis is not a death sentence. It is just one of those incredibly difficult and painful things that some of us are burdened with.
I want to leave this blog behind as my gift to the MS world. It is concise, brutally honest, happy, sad, uplifting, and depressing. It is the whole of what MS is in “my” life. It’s different for everyone. In the long run, I want readers to feel that they have gained a lot of information (not the technical stuff), about what life is for one person with MS.
My motto is “MS does not define me. I define what MS is in my life.”
I’ve been in the hospital for about a week and find myself on yet another difficult road–par for the course.
I’ve learned some news from Doctors that stopped me dead in my tracks, so to speak.
Adjustments must be made. Things to do, people to see and hug. Wrong turns corrected–or not. It’s up to them. I’m happy with whatever the results may be because I know that my roads have been tumultuous and littered with debris from many storms, but I’ve crawled through them coming out on the other side with my decisions if not always clear to others, damn clear to me.
I live my life to inspire and to be inspired. I’ve not the time nor the energy to sweat the small things.
It’s funny how people don’t always walk ahead, stop, turn around, to see how far they’ve come. Remember how children run ahead? They turn around to see what’s keeping you? You try to stop them from running too far ahead for fear of danger, but they skip along unaware of such nonsense. They are fearless, excited, and if they fall or hurt themselves, they cry for a bit and then are merrily along their way with their “boo boos” kissed away.
That’s what my life has been like with the exception that there was no one to kiss my “boo boos” away. I kissed them myself. I’m still kissing them, but some things just can’t be kissed away.
This is a big “boo boo.”
My intention is to run ahead, turn around, and smile at how far I’ve come. I already know there are people left behind, but that has been their choice…..a horse to water and all that.
Once I’ve patted myself on the back for having come this far, I will turn around and look ahead instead, yet again, eagerly trying to see what’s around the next corner.
I will never grow up and I’m glad I won’t. Instead I will skip along holding onto other’s hands, or not, and when I’m so tired that I finally fall down to the ground wanting to be picked up by a parent to carry me to my bed, I will nestle in the arms of God who has been there all along even though He chose not to show Himself. (Whew, that was a long sentence.)
“Difficult roads lead to beautiful destinations.” I love this quote and have no idea who wrote it. I’m fortunate enough to have found these destinations late in life with profound love in my heart.
With quiet fortitude, patience, indulgence, and insistence on wearing “rose colored glasses” when viewing me skipping along, my husband, David Obert, has been the flower in my hand.
I’ve been away at the ball, dancing around and around with multiple Doctors at one facility or another for over a month. I danced to their tunes for a while but I didn’t like the music they were playing. I decided to cue up my own music and they looked around in confusion. I held my arms out and waited to see if anyone would take me up on the next dance. I decided I had enough of listening to everyone. It was time for me to take control of the ball (pun intended).
Having Multiple Sclerosis is a tough situation. I admit that. We are all hit with one thing or another medically. I listened to every Doctor that walked into my room. It seemed that every Doctor belonged to a group such as Gastroenterology group or Cardiology group and so forth. I never knew which Doctor belonged to each group because I wasn’t seeing the same Doctor twice until I had been there long enough for them to start their rotation over again.
I learned that I had Congestive Heart Failure (CHF). What a scary thought. In the periphery of my eyes I could see the cloaked black figure carrying, is it a scythe? Oh no, now what?
Conversation with self:
Am I going to die?
Of course you’re going to die! Everyone dies.
But is it imminent?
Well it’s imminent for everyone in a way. One could walk out a door and get hit by a car and never know what hit them!
Okay, alright, but do I have to know about it in advance? I’d rather be a person who walks out the door blissfully unaware that the next second I’ll be laying splattered on the ground.
Are you sure about that? Wouldn’t you rather know so that you can get your affairs in order?
No! Well, maybe yes. I don’t know. Stop interrupting my thoughts!!!
Okay. Just trying to help.
Fear is compounded when you don’t know the facts. The longer you lay there watching people coming and going stopping to poke and prod at you, change bags on your pole, hand you a cup of pills making sure you swallow them, the more you lose yourself in fear. If you live a life floating around a dance hall with a partner you don’t know, the more you begin to wilt like a wallflower at the dance.
I threw my dance card down on the floor and stomped on it. Look out. I was about to have a tantrum.
I asked for my laptop and started bugging people for copies of reports. I looked up everything I could about CHF. I started asking intelligent questions and getting intelligent answers. When they tried to speak above my head, I shifted around in my bed as though I was about to get up and use the commode by my bedside. That brought their attention immediately back to me. Then they remembered they were speaking to a patient not a colleague.
I insisted on viewing the tests they were performing on me, if at all possible. I would ask, “What’s that.” I would usually get a response. I learned a lot. I learned a lot about what I wish I didn’t know after a bit.
I learned I had additional problems that had to be dealt with as well. Add a little UTI (urinary tract infection) to the whole mess of things. It’s no wonder why I’m so short of breath.
Every year that slips by I have to contend with more and more medical issues, as I watch in disbelief. I laid in bed contemplating life. I felt myself slip down a spiral of depression although my face never showed it. In fact, the staff commented how they loved coming into my room because I was always so cheerful and attentive to them. But behind that smile and my eyes there was my body moaning and groaning on the floor with a blanket wrapped around me. I would occasionally sit up in the dark room and stare at nothing. I couldn’t sleep.
I was alone in my depression chamber. I wanted to be alone. I didn’t want anyone else in there thinking they knew how I felt. I didn’t want someone trying to put words into my mouth about how I was feeling when in fact, I wasn’t feeling that way at all. People try to be kind, but in truth, they are selfish. They like to hear themselves talk and they think they have some empathetic reason to justify their speaking to me with garbage words. Women are particularly insistent that they know how you feel.
What you need is someone to listen, when and if you’re ready to talk. You don’t want someone to tell you to start talking, or expect you to throw yourself at them in tears blubbering about all that is wrong. Instead, your friends or family start yammering at you about what they THINK they know. What happens then? You are the one who has to be patient and allow them to talk. You sit there and listen patiently to them in order not to seem rude or cause hurt feelings. Suddenly you’re not the patient anymore. They are. They just don’t see it. They are voicing how they would feel given the same situation. I’m not them. I’m not like anyone I know.
How dare anyone compare my life to theirs as though to say “been there, done that.” Of course I know that’s not what they’re saying, but in reality, it feels that way and undermines rather than comforts a person who is already overwhelmed.
Depression is common to people with Multiple Sclerosis. It’s also common to a huge percentage of the human population. Some know that they have it, others don’t. Some know they have it but won’t admit to it, and others do admit it. Some are ashamed of it, others talk about it the same way they talk about having any other malady in their life.
I used to be ashamed of it. I hated having to put it down on medical forms because it’s the first thing Doctors ask women. “Have you been under any stress lately?” Aw come on. Stress? Why only lately?
Everyone who is breathing in this world is under stress. I repeat, everyone. There is good stress and bad stress, but they are all stress factors. These Doctors look at you with expectancy in their faces waiting for you to spill the beans. Once you do, they then go on to explain, “Eureka! This is why you’re sick or think you’re sick.” That’s why I didn’t want to put that down on any medical forms. I eventually got over it.
I have PTSD, post traumatic stress syndrome. It’s put me in the psychiatric ward of a hospital a couple of times. I have a particularly severe form of it. I have taken medications to control it for nearly 30 years now. I had a childhood that was severe. When I told some people a tiny portion of my history, they looked at me in disbelief. They looked at me as though I lied. Even my sisters don’t remember many things that happened because it didn’t happen to them. We were separated by age groups where we were at and my life did not commingle with theirs. We have some similar harrowing stories but I was older. A lot more happened to me and my memory is more clearer.
I stopped talking about my growing-up years. I made an exception to some but spoke of it in a very broad way. Sadly, those ears that I whispered to, listened but did not hear. Somehow, I was at fault in their eyes. To them, I had total control of my teen years and the years I led in my twenties. They have no idea how out of control I was. That I was immature emotionally for my years and that the only decisions I made were based on one reason and one reason only, what was good for them. It was, in fact, the only good thing I did during that time. Yet this is unforgivable to them.
I have been swallowed whole by past memories. I’ve spent long and lonely years alone travelling around the country with no home. I longed for yesterday when I was whole for just a moment in time. I have hurt and been hurt by people and by my own worst enemy, me. I have suffered by my own hands and thoughts.
I lived a life of people not believing me. Not my past history nor my present history. While visiting doctors explaining bizarre symptoms, I could see in their eyes that I had to be malingering. Why in the world did no one believe me? Why did doctors assign it to stress instead of testing me? Why did other people just decide not to believe anything I said before I ever even opened up my mouth? They built a preconceived story about me that no explanation I gave changed. They don’t even know a smidgen of the story and they don’t want to know. All they want to know is —why? Even when they know why, I come out dirty, filthy and unforgivable.
Depression is a real illness just like any other diagnosis. If you don’t get it taken care of, you will get worse. If you don’t admit it to yourself first, then you won’t get better. If you don’t reach out for help, no help will be given to you. You know when you have depression. You don’t at first, but then it dawns on you. It’s at that point that you need to seek help.
I tried to get help the wrong way. I believed in people. I believed that if I was open and up front with them, it would ease my pain. But no! Of course not! Their pain was so much worse than mine. Like I said. They had predetermined who I was and nothing I said was going to change their minds. They treat neighbors and coworkers better than I.
People in life were able to manipulate me for a long time. I was always a highly intelligent person but at the same time, a very immature person emotionally. I wanted love so badly that I would allow myself to be berated and stomped on if only for just a whisper of a smile, a hand held out at the ballroom dance floor from someone looking at me with love in their eyes.
I didn’t want to dance the tango at the hospital or in my life. I wanted to waltz. I didn’t want the push and pull, the “I love you’s and then the I don’t love you’s.” Worse yet, “I love you but…..” The setting of conditions.
I took control of my decidedly difficult time this past couple of months. I’ve also taken control of other medical issues including depression. It rears its ugly head up now and then, such as now. I know what to do about it.
I choose to dance with the “Man In The Moon” from a previous blog who looks down on me and never gives me conditions to live up to or challenges the very core of the person that I am. He accepts me in the darkness of the night and invites the stars to shed some light so that I can see my way to him.
I prefer the night and the beautiful peace of solitude creatively spending my time with my God-given gifts than to sit around and wonder about people. I don’t have time for the games that people play and I’m not putting up with it. I haven’t put up with it for years with the exception of one, whom I’ve finally let go. I refuse to reach out to anyone anymore. They know where I am.
During times like these, you come to value what’s truly important. People once were, and with the exception of a few, they no longer are.
Do I sound like a bitch or cruel? Perhaps. It’s not in my plans to give it another thought other than getting it out here on paper to make myself read if not heard. If no one listens to the words I am speaking through my writing, that’s okay too.
I go to the night where I can see the light of the pure soul that I was and that I’ve regained. I’ve dusted it off and shoved it inside next to my literally broken heart and my metaphorically broken one as well.
Sometimes you meet someone and for some inexplicable reason, you click with that person. Has that ever happened to you? It doesn’t matter whether they have Multiple Sclerosis or not. In the world of mutual admiration, illness takes a back seat.
At the same time, sometimes you meet someone and for some reason they rub you the wrong way. Getting to know them better, you realize that what you first felt is still how you feel weeks or months later. Has that ever happened to you?
Then there are strangers whom you haven’t met. You know what I mean? For instance, people walking towards you on the sidewalk. You smile at them and they don’t smile back? You’ve seen them. I’m sure you have. Or are you the type of person that doesn’t smile at strangers? I smile at them all the time, when I’m out that is, which isn’t very often. These people look at you and they will react one way or another.
It is evident that something is wrong with you. Either you are walking with a cane, leaning on someone’s arm, in a wheelchair, or walking like you’re drunk and hanging on the wall of a building. I know you understand all these scenarios.
I smile. It’s simply my nature to smile when I catch someone’s eyes. That’s a weird expression, isn’t it? (Catch someone’s eyes.)
So okay, I smile at people and some will smile back and others won’t. Some people will even respond to your smile by uttering a greeting of one kind or another such as, “Good morning.” Other’s make a point of trying not to look at you. You can see them glance your way, and then they quickly avert their eyes to something else. Still there are others who don’t look up at all. They resolutely stare down at their feet as they walk.
Sometimes the people that you meet have a predetermined impression about you based on your outward appearance. Aren’t we all guilty of that? The color of your skin, how fat or skinny you are, tall or short, the way you walk and talk, their perceived intellect of you, pretty or ugly, and the list goes on. All of these values that people judge each other are subjective, meaning that it is an individual’s perception of these values.
So what am I going on and on about? I’m not sure!!! Let me try and remember. You know what this is like. Sheesh!
Okay, I’m back. Have to type fast before it runs away from me again to hide in the dark recesses of my mind, as though playing hide-and-seek with me.
I’m addressing how we react to people when we first see each other and the powerful impressions that are imprinted in heads. Because of those impressions, we make a value judgement. Right?
This is highly unlikely with people with MS (Multiple Sclerosis) since many of us are in wheelchairs, but it’s for the others who read this blog as well. Then again, some of us with MS also think this way. Think about it. We see someone in a wheelchair coming towards us. Do we say hello or not? What if the person in the wheelchair is hanging over the side (exaggeration here) and drooling? Were we going to say hi but changed our minds? Why did we change our mind? We probably made a judgement decision. We may not be aware that we did, but we probably did.
We complain about people judging us but I bet if you analyze yourself, you too are judging others. Practice what you preach? Yes, I think so. I know that I am guilty of it but if I become aware that I’m doing it, I make an immediate attitude adjustment or at least try to.
I don’t want people judging me because the symptoms of Multiple Sclerosis can be very obvious, as in my case. What right do I have to judge others whether I’m in a wheelchair or not?
Being ill does not give us justification to throw away decent human principles. Having Multiple Sclerosis or any other disease does not give us the right to expect more from society at large than when we ordinarily would expect to receive. Now I’m talking respect and moral issues. What’s that old saying by ??? I know it’s in the Bible but it’s in other places as well, even older than the Bible.
“The Golden Rule or law of reciprocity is the principle of treating others as one would wish to be treated oneself. It is a maxim of altruism seen in many human religions and human cultures. The maxim may appear as either a positive or negative injunction governing conduct: ” (I looked this up in Wiki.)
So let’s not kid ourselves. If you want to be treated with kindness, then be kind. If you want that smile when you walk down the street, smile at them. If you don’t want others to treat you with disdain, don’t do it to others.
If you expect more than what you give, it ain’t gonna happen. I’ve found the opposite to be true. If you give more than what you receive, oftentimes you are met with disappointment. That’s no reason to clump people into a Rolodex file under “people I don’t like”.
A good thing we can do for ourselves in every day living is to treat others how we would like to be treated. It’s difficult but it’s a positive thing to do and it’s medicinal. Don’t fill your heart with bitterness towards others who treat us unkind. Instead treat others who are unkind as if they have a disease and they need help! Then give them the attention that you would like to receive as an ill person. Remember that what you give is what you’ll get, if not in this world in some other world.
MY TAKE ON THIS:
I don’t know what got into me to write the above. I think it’s because we went out the other day and I encountered two different types of people. One didn’t meet my eyes, another did and smiled. There was another person, now that I think about it, who just stared down at the ground. I felt sorry for them.
My first impulse was to feel indignant at the person who saw me but didn’t smile and the other person who saw me then glanced away. Then I got to thinking about why I felt this way. I suppose I’m telling you what I told myself when I hollered at myself inside my head. I do that a lot. Holler at me inside my head.
So take this particular blog for what it is. A reminder to self to be nicer to people and not to expect special treatment just because I’m ill–and not to judge people by their cover because I don’t want them judging me either.
Ah, the new year is upon us. Should we celebrate it or not?
It looms before me and if it was anything like last year, I think I’ll press the reset button on my life and hope it takes me back to before last year began. Six surgeries! I almost tremble at the thought of what this year might bring.
Actually, now that I think about it, I don’t fear the new year. I anticipate it just like I anticipate anything new. It’s like a Christmas gift that one gets where you open the package slowly in anticipation of what it might prove to be.
Just like Multiple Sclerosis. You just don’t know what the year will be like, but isn’t hat true of anything? Rather than fear the new year, I think I will embrace it as it unfolds, like a lover where you run kisses up and down his face until you get the reaction you want. LOL.
I’m sitting here thinking, bring it on! I know I can handle anything this new year will bring me. Perhaps I will get lucky and face only great things. Maybe I won’t be so lucky and have a predominantly difficult year. That’s okay too. I’ve proven that I can handle many things that I thought I couldn’t.
Add to all the physical problems were the emotional ones to do with family. It was a traumatic year for my family which of course, rolled on to me. When they hurt, I hurt. When I hurt, they don’t. Seems a bit uneven doesn’t it? I don’t care. It is what it is. Their pain is mine, at least it affects me as though it happened to me physically.
The ambiguity of life is common to all living things. None of us knows what will happen to us even within the scope of my favorite five minutes, the one that is happening right now. For instance, I spill this cup of coffee all over my computer keyboard and in the process I burn my hand. I don’t care about the hand. I grab something to wipe the keyboard down with or flip it upside down hoping I caught it in time so that the coffee didn’t have the chance to drip down between the keys. Dream on. I’ve never been that lucky. I move way too slow to catch it in time.
This leads to a ruined keyboard. I can’t get through a day without a keyboard since I’m primarily a desktop user. What to do? I could order one online, but I would have to wait a day or two, if not longer, to get a keyboard in the house. I could use my husband’s keyboard, but then he’d be without his and he works on his computer daily like I do. I don’t like it when my battles seep into his daily life, although we all know it does. However, this is something I can do something about. Let his computer alone and deal with my own problem.
This then leads to, should I buy one sight unseen or should I go down to a store? The last one I bought was sight unseen. It turned out to be a nice keyboard, as keyboards go. Should I get the same one? Nah. Things change during the course of a year. Technology changes and I’m addicted to the latest and greatest. Going out to check out the keyboards has a two-fold advantage. I get out of the house, and of course, I get to check out the latest and greatest.
I find my old keyboard and compare it to the newer keyboards. They vary in price and in function. To wired or go wireless? To go with a mouse included or not? You get the idea. One event sets off a series of other events. Should I look ahead and plan for every possible outcome or should I deal with what is happening right in front of me right now?
I can’t sit around and worry about every possible outcome while my keyboard is getting ruined and everything else that is in the way of the path of spilled coffee. I need to take action right now for what is happening right now. I need to mop up the spilled milk, then assess my wet keyboard and so forth. If I take things sequentially and logically, I can deal with it one step at a time. If I think about it and weight all the possible things I can do, in the meantime, what started out as a bad event grows into a destructive event instead of a minor one.
Okay, so all this leads me to think this about the new year. Not to worry. Not to fear. Not even to plan. Planning assumes too many things which turns into worries.
I don’t make resolutions because I have too much respect for myself to set myself up for failure. If I do well with something I would like to improve, this is good. I think that most things that need improvement will take more than one year to take effect.
I will go my merry way, as merry as I can be, that is. One step forward leads to another step forward and eventual destination. Along the way, there will definitely be falls, perhaps some broken bones along with tears of consternation, anger, sadness. This is the story of life.
All of us can lead a life of being disabled or we can choose a life of being enabled. My disabilities does not disable me nor does it define me. My ATTITUDE is what can disable me.
I hope you are doing as well as you can be in this imperfect world of ours.
I’ve been in and out of here due to medical issues. I’ve had six surgeries this year. Ugh. I have one more I need to schedule. I’m hoping that this will be put off until next year although with the symptoms I am having that makes it apparent that I have a problem, I don’t think so.
It seems to me as I head off to another birthday which gets me nearer to becoming a pile of ashes in an urn, that my body is racing to get there. My brain/intellect screams NO! I’m not ready. At this point, my body seems to be winning. You all know me and know that I will not go until I say it’s time to go.
I don’t fear dying. I’m rather looking forward to it so that I can find out once and for all, “Is there life after death?” It would be great if I could figure out a way to let you all know that there is or isn’t. I could be an irritating fly that is demanding your attention. How I communicate with you would be a conundrum though. Maybe I could fly on the letters of a typing keyboard?
Nah, that wouldn’t work. You would be so busy trying to swat me that you wouldn’t know that there was a pattern to my stopping and going. What if you swatted me before I could show you my pattern? Then there would be a new begging question, “Is there life after death of a fly?”
Please be patient with me. I am going to stop for now. I will soon have enough strength to give you a decent article in here.