Then Was Then This is Now.

that-was-then-this-is-now-quote-coeurblondeHello again,

I wrote a lot about the pains in my legs.  I also wrote about the treatment I had been getting for these pains both bad and good.  I believe I left off with seeing a new Pain Management Doctor under advisement of my Internist.  The plan with the new Doctor was to go ahead and try another shot in my L5-S1 joints of my spine.  He decided to do it bilaterally, meaning that since each disc of the spine has two nerves coming out of it, both right and left sides, that it made more sense to do the shot on both sides.

It’s been about four days since the shot.  I’m feeling better.  It’s not to say that the pain is completely gone, but I’m feeling almost normal again.  I hold my breath each morning when I wake up.  I take tentative steps out of bed hoping that how I felt the previous day is maintaining the status quo.  Sure enough, it has.  Let’s see how long this last.

Between my Internal Doctor adjusting some of my meds to the maximum dosage and the shots, I think I may land up having a decent summer.  I’m so grateful.

Moving on to other bits and pieces of living life with Multiple Sclerosis.

Many of my medical caregivers are impressed with how I’m still standing on my feet, digging ponds in my back yard, and the list goes on.  They are also impressed with my mental attitude given the history of Depression with Post Traumatic Stress Syndrome.  (There was a time I would not have mentioned my mental illness let alone write it for the whole world to see).

I’m not impressed.  For me, I don’t know any other way to live my life but to fight.  It comes natural to me.  My life has been an uphill battle since I was a child, so fighting to live my life my way is the norm.

I don’t want to write about how terrible MS is.  Sure, it is extremely difficult and can be very painful for some.  Not all of us progress the same way.  I’m at a stage where I’m very symptomatic all the time.  This doesn’t mean I want to wallow in it.  I don’t want to use this written venue to spout out how terrible I feel.

I give you the facts.  I tell you everything I’m going through.  However, I don’t pontificate about the woes of it all.  There are times when I do express my deepest thoughts.  What made me cry, what upset me, and so forth.  But again, these are facts.  This is my life.  This is not a venue, at least for me, where I’m expecting claps on the back for being strong or whatever.

For me, this venue is about educating people about Multiple Sclerosis and what can happen to a person along the way.  Armed with this information, they are aware and can be prepared, should these very issues happen to them.

Sure, there are times when I’m miserable, like these past eight months with intractable pain with no relief in sight.  However, for the time being at least, there is relief.  Should the pain return, then we’ll try something else.

I was delighted that I was able to treat my husband to a Father’s Day dinner.  The amazing thing about it was that I was able to sit on a chair without wiggling the whole time trying to find a pain free way of sitting, and that I sat through the entire dinner without having to get up early and wait for my husband outside while he paid the check.

Then was then and now is now.  What happened before is now history and today is a new page in history.  I concentrate on what is important and don’t bemoan what is lost.  There is no point in it.

This isn’t something learned overnight.  I believe that one must go through a learning period of comprehending this.  When you get tired of hearing yourself talk, then you know it’s time to change your perspective.  When you get tired of reading your own words, then it’s time to change something.

I’ve gotten to a point where I just can’t tolerate being by people who are stuck in a rut and won’t take the helping hand in front of them to pull them out.  They insist on staying there believing that everyone else wants to hear them wailing from the rut, that they can’t get out.  I don’t want to hear about it and I don’t want to read about it.

I am not looking for sympathy.  I’m looking for solutions.  I’m grateful when someone comments about how they like reading my words.  I appreciate that because it takes effort and thought to do it.  I give to you with my words in the hopes that you come to understand the life of people like me.

I try to stay in touch with other MSers but not when they drag me down.  I can’t afford to be dragged down.  If they need help and they ask for it, I will gladly give it to them.  I don’t have the strength to try and pull someone out of the rut if they in turn, try to pull me in with them.

We all have our reasons for writing.  They have just as much right to this venue as I do.  This doesn’t mean we have to like each other’s blogs.  Some of these bloggers are excellent writers.  They use their blogs to satisfy their own needs, whether it is like my reasons or for their own reasons.  Kudos to them.

What it all boils down to is if I’m going to spend my time writing, I would like to think that I do it well and that I give people food for thought.  Other writers are also giving people food for thought.  I’m proud of all us bloggers who write about this disease called Multiple Sclerosis.  It’s important that people read all our blogs to see the effect it has on us at various stages of the disease.  How different we all are and yet, how similar we are.

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On Maggie’s Pond

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.

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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 Smile

Something I haven’t talked about is what’s life like these days.  I’m not talking about the medical stuff here, but life!  Day-to-day life which is what the blog is all about.  I’ve been so concentrated on the pain issue that I haven’t talked about anything else.

I dare anyone to blame me for this.

Here is a weird thing.  I decided to buy a 2017 Fiat 500.  Why?  I seldom drive anywhere.  I’m heavily medicated most of the time.  I can’t see worth anything especially at night.  I don’t have deep pockets of money to spend anywhere.  You can’t haul medical equipment in the car.  The trunk is too small.  You can’t even haul passengers in the car unless they are munchkins with teeny tiny legs.  I can’t lift my right leg to get into the car.  Surprisingly, the front seat of the Fiat is higher than your average car.  So what I have do is this.  I found a leg raiser thing-a-ma-jig at a medical supply store.  It looks like a loop on a long wired handle.  You place your foot in it and pull on it with your arms.  It raises your foot up, almost high enough to the level of the Fiat.  It works well enough.

My life is spent running from one Doctor’s office to another.  It’s the highlight of my life.  I get to get dressed in something better than I normally do.  I put on a wig since my hair is shot, and some makeup.  I look okay for the day.  Lastly, I put on my smile that everyone seems to love.  As long as I’m smiling, the world thinks everything is okay with me.

I have cleaners come in every two weeks.  Will hope to move them up to every week when things get better financially.  I’m in the market for a new wheelchair that medicare approves of.    I spend a lot of time researching this.  Have you seen what’s out there?  Unbelievable!!!  One costs as high as $14,000.  Which is, of course, the one I fell in love with.  Anyone care to make a donation?

My Take On This

 All is well with the world around me as long as when they see me, I am smiling.  There is no such thing as showing a face of pain.  If you do, they compare their pain to yours!  At first, early in the disease, I tried to educate people.  I no longer have the desire to do so on a daily basis.  Hence, the reason for the book.

I’ve reached a point in my Multiple Sclerosis where things are sliding downwards and fast.  I fought wheelchairs, but now I spend my nights prowling through websites and watching videos on all that is out there, dying to get my hands on one that works.  

I watch my life changing almost daily and dramatically.  There’s nothing I can do about it.  There is only one thing to do.

I smile.  It makes the people around me feel better and believe it or not, it eventually makes me feel better.

 

I’m So Fricking Tired!

Fatigue.  What is it?  Medicine Net describes it thus:

  • Fatigue (either physical, mental or both) is a symptom that may be difficult for the patient to describe and words like lethargic, exhausted and tired may be used.

The dictionary website describes it as this:

noun
  1. weariness from bodily or mental exertion. a cause of weariness; slow ordeal; exertion:
the fatigue of driving for many hours.
  1. Physiology.  Temporary diminution of the irritability or functioning of organs, tissues, or cells after excessive exertion or stimulation.

What about fatigue in Multiple Sclerosis?  The above MS website has this to say.

Fatigue
People with MS may become more easily worn out after physical activity than usual. In addition to experiencing physical fatigue from doing simple things, people with MS may also experience mental fatigue from depression. There is also a type of fatigue called “lassitude” or “MS fatigue” that many believe to be unique to people with MS, which is generally more severe than normal fatigue. This type of fatigue may happen almost every day and could start early in the morning after a good night’s sleep. Lassitude also often worsens with heat and humidity.

Here is what fatigue means, not a quantified version of what fatigue is.

  • It’s the inability to sleep soundly at night. Yep, you heard me or read me…whatever.
  • You want to sleep but you can’t or maybe you won’t. You start out in bed and you fall asleep, but after an hour or two, you wake up.  Why?
  • Incontinence, must go to the bathroom.
  • Pain, you wake up with it.
  • Brain turmoil, there is too much going on in your head and it won’t let you rest. A sense of having to get something done.
  • You awaken bright-eyed and bushy tailed.
  • For me, I prefer night to day.

When you wake up, whether it’s in the morning or in the middle of the night, you are going to feel tired.  That’s true, but tired and fatigue are two different things.  Tired is due to all of the above, so is fatigue, but fatigue is so much more than that.

You want to go back to bed, but you don’t.  I know.  It’s a conundrum.  It’s habit forming to stay up once you wake up.

Another reason is that you’re too “tired” to go back to bed.  I know, it doesn’t make sense, but those in the know—know.  It takes too much energy to crawl into bed again and go through the whole process of trying to sleep.  This part is fatigue.

It’s easier to just stay up and walk to the computer with coffee in hand than to go through the nightmare of the sleeping process.  However, once you’re at the computer, or watching TV, you fall asleep with your coffee in hand.  You wake up with scalding coffee dripping down you.

You jump awake and you hold your nightgown away from your body to stop the burning, but you don’t go change into something clean.  You wait until everything cools down and you continue doing whatever you were doing until you fall asleep again.

The day becomes a nightmare.

You try to listen to conversations but you feel yourself falling asleep.  You snap awake, but you find yourself sliding down again.  You can’t control it.  If you’re doing something physically active, it’s easier to stay awake, but I’ve found myself falling asleep standing by the sink doing dishes.  You have a form of narcolepsy.

You have no desire or very little desire to do anything.  You force yourself to do things, nonetheless.  At least I do.

I am blessed with artistic abilities in various forms, so that can keep me busy—for a while—then I fall asleep.

You feel compelled to say yes to friends and family to do things with them and yet you have this deep-seated desire to say no.  When it comes time to do this activity, you bail out or you go and try your best to be “there” in the moment.

Fatigue to me is this overwhelming desire to stay in my jammies, which I do anyways most days, and do nothing.  My head is too heavy to lift, so are my arms and legs.  I want to lie prone.  I want to do nothing and think about nothing.  I don’t care about anything.  I am neither here nor there about every conceivable subject.  However, what I just wrote is the last thing I want to do.  I don’t want to lay prone and do nothing.  It’s impossible for me to lay and thing about nothing.  I do care about everything.  I am here and there.

Once again, I’ve written things that may be confusing to people.

I’m not explaining this very well, but I’m here to tell you, yes you, who think that you know what fatigue is, you don’t know anything!!!

You are tired and sometimes feel fatigue.  That’s it.

We are fatigued and sometimes feel tired.  Another ball of wax entirely.

Nothing has happened to me to cause me to write on this subject except that I’m feeling fatigued.  My mind has gone on a hiatus.  It requires rest and quiet.  Not rest in the way of sleeping, but a slowing down of the world at large and being in a place where decisions belong to someone else.  Unfortunately, my world does not slow down.

People think that when you are disabled and a stay-at-home person, that you have all this time on your hands to just do whatever you want or do nothing at all.  To a certain extent, this is true for some.  This is not the description for others.

I will talk about this in my next blog because if I start it here, this blog will be ten pages long.

Hugs to all who read this.  I sincerely appreciate your eyes that touch upon the words written by my shaking hands, the heart that takes to heart the words of confusion and yet cohesive linear paths to what it is I need to say.  Well maybe not so linear.

 

 

 

Are You Playing Games With Me?

Somehow, instinctively, I knew that I should play games.  I don’t know how I knew it, but I did.  Come to find out, after playing games a lot for over a year or so, I happened Candy-Crush-Saga-featuredupon an article that spoke to the cognitive function and the positive impact of game playing.  Unfortunately, I don’t know where the article was on the web that enlightened me because that was many years ago, but let me see what I can find now about it.  Give me a few minutes and I’ll be right back.

Here is an article I found from Multiple Sclerosis Net (https://multiplesclerosis.net/living-with-ms/gaming/).

Unfortunately, she too doesn’t mention where she found her article, but like me, she intuitively found gaming to be helpful.  Here is her article.

 So let me tell you how excited I was to see this news release about video gaming helps those with multiple sclerosis! I did a little happy dance on this, because I’m a total gamer. Not just on the ‘gaming console’ but in the App Store and all that. It seems to help my train of thought going… really challenging me!
So, when I have some free time, which I try to make time for daily, I will play video games on the Xbox or on my tablet. My husband actually noticed that after I started playing more games, that my ‘cog-fog’issues seemed to happen less and less.
Now, if only we could all be professional gamers… ha-ha, but anyways, I’ve also played games on Facebook and on the computer in general, prior to there being easy access to games through apps.
So, back to the study… one of the firsts sentences is what I really wanted to highlight, “Video games targeting cognitive abilities may improve brain function in patients with multiple sclerosis (MS), a new study found. Results, published in the journal Radiology, showed that these games strengthen connections between neurons in the thalamus, a brain region crucial for information processing.”
It seems that they were using specific games to target the ‘cognitive abilities’ in the brain… but I just wanted to share that I’ve personally found that challenging myself here and there just ‘playing’ games has really helped. Especially the brainteasers, the ones that make you think, etc. My thought process has seemed to speed up, with the help of games that ‘keep me on my toes’, where I have to process the information quickly, etc.
Now, when my husband asks me what I’m doing on my tablet, phone, computer… or why I’m playing the Xbox, I say, “Don’t judge me, I’m improving my cognition.” Which, he just laughs and shakes his head at me about it… but you get the idea.
My interest in wanting to play more games has really brought more ‘quality-time’ with my kids because I have two boys that are 7 and almost 10… so this is an activity that we get to participate in together, and they have no idea that it is helping me in some ways.
Also, I’m not saying that ALL games have helped me… just some of them. I mean, it’s hard to say that HALO (my favorite) or Call Of Duty has helped my ‘thought process’, but at least it’s something that I enjoy doing, instead of just sitting around pondering the ‘what-ifs’ in life…
I remember last year, that I attended the Abilities Expo in DC-Metro Area, for MSWorld. Dr. Kantor actually interviewed someone that made a charity, for those with disabilities that like to play video games, but need some sort of assistance, it’s called AbleGamers, the coverage video can be found by clicking here.
Anyways, this was something that I was VERY excited to hear about and I wanted to share with my fellow MS’ers (and fellow gamers) out there.

Let me see what else I can find.  Be right back.

Wow!  From the same site, Multiple Sclerosis Net, I found someone else talking about this same issue, but this time she gives the article specifics.

Cognitive decline – the slowing of our brain’s functioning – is often viewed as the most worrisome of all the possible effects of multiple sclerosis, but treatment options are rarely identified.
According to the National Multiple Sclerosis Society, “Cognitive changes are common in people with MS — approximately half of all people with MS will develop problems with cognition. … In MS, certain functions are more likely to be affected than others:Memory (acquiring, retaining and retrieving new information).
The Multiple Sclerosis Association of America featured cognition in a recent issue of The Motivator, and offers a thorough explanation of the current reasons thought to cause change in Cognitive Issues with Multiple Sclerosis: Research, Strategies and Support. Beyond the physical change due to the demyelination process or brain atrophy, they also suggest polypharmacy (use of multiple drugs that might slow cognition), gut bacteria and/or smoking may contribute to cognitive decline. MSAA cites that the number of people with MS affected by cognitive decline may be up to 70% and there are times I feel like I am in that group.
So I was especially excited to see a press release from the NYU Langone Medical center about their research into ways people with MS can improve their function using online brain training games. Dr. Leigh Charvot presented the results of An Adaptive Computer-Based Cognitive Training Program Improves Cognitive Functioning in Adults with Multiple Sclerosis (MS): Results of a Double-Blind Randomized Active-Placebo-Controlled 12-Week Trial at the recent American Academy of Neurology (AAN) convention in Vancouver.
Dr. Charvet’s team used PositScience’s online program Brain HQ for the study group and the other group used a placebo program. For this study they included 135 people who were already showing cognitive problems associated with their MS. Each participant was encouraged to train on their computer program at least one hour per day, five days per week and there was a technician available to help and also provide direction.They found that people affected by MS who used Brain HQ for one hour per day for the entire 12 week study had a positive increase in cognitive functioning by 29% compared to the placebo group’s 15% improvement. I bet you will agree that is a significant number and is very encouraging. The researchers suggest the improvement rate may be even higher than found in their study, because their placebo group did their activities on average 19 more hours than the test group.
Equally encouraging with these results is that the participants all did their brain activities at home, on their computers. Access to therapy care continues to be a problem for many people, and that can include lack of transportation to appointments outside the home and the high costs of treatment visits. Being able to do this training in the convenience of  home and  on our own schedule takes away part of the access problems.
“Many patients with MS don’t have the time or resources to get to the clinic several times a week for cognitive remediation, and this research shows remotely-supervised cognitive training can be successfully provided to individuals with MS from home,” says senior study author Lauren B. Krupp, MD, professor of neurology and director of the Multiple Sclerosis Comprehensive Care Center. “Future studies will look at which patients with MS might respond most to cognitive remediation, and whether these improvements can be enhanced or sustained over longer periods of time.”
A remaining hurdle for this at home training is the cost – Brain HQ, the program that was used in this study, has a free program that includes access to the introductory activities but they  also offer a subscription program for as little as $8 per month ($96/year). You may not be ready to buy a subscription and the free version allowed me to try their program, which proved to be quite challenging. Although not necessarily studied for MS, there are a number of other online brain training sites – one of the best I’ve found is NeuroNation, run by a group of prestigious neuroscience institutes from around the world. NeuroNation has a comprehensive free program and they also offer a premium program that has a fee to use at about the same price as BrainHQ. If you use any online brain training I would love to know which ones and your opinion as to their effectiveness.
Even though we’re adults, this research shows we need to play more games – especially the ones that will assist our brains in the fight against MS.

The link to this article is https://multiplesclerosis.net/living-with-ms/fun-and-games/

There are many other sites that confirm the benefits of playing games for aging adults, young children with various problems and people with cognitive impairments such as those with us with Multiple Sclerosis.

So I ask you, are you game playing with me?

Diggin’ It

diggin itThis is no time for excuses, I think to myself.  I’m back from surgery for a hernia repair, one of many.  This was a particularly difficult one since it was repairing a repair of a hernia.  I landed up with a swelling, called a seroma, that was the size of a football.  I’m still walking around with a post surgical tube hanging out of my stomach.  At the end of the tube is a small ball that collects post surgical fluid and blood.  I have to empty it out every night and jot down how much was collected.  This will determine when I will be finally rid of this pain in the ass, or should I say stomach.

The reason I’m complaining about excuses is that it’s so easy for me to fall into a lethargic stupor when I come up with a viable excuse to not do anything.  It’s so easy to fill my days with languid perusal of magazines or online sites that have no relevance to my real life.  It’s easy and it’s fun.  I do manage to fix supper every night, albeit late many nights.

Today, I told myself, “this is no time for excuses.”  I am hard talking myself and slapping myself around in order to snap out of my wanna be state of “oh well”.  Like Scarlett O’Hara saying, “Tomorrow is another day.

It worked!  I went out into my back yard and looked at my abandoned koi pond project begun before my surgery.  I decided to work on it, much to the dismay of my husband.  After all, I’m still running around with a tube dangling from my stomach and a whole line of stitches that runs from my waist nearly all the way to my belly button.

Then I took a fall out by the pond.  I landed up half in and half out of the pond.  I found myself laying back and laughing because the pond was full of muddy water from several days of rain.  I was laying in muddy water.

One half of my body argued with the other half of my body.  The one half that was practical and husband-like told me,

“You have no business out here in the first place.  What are you trying to do; cause yourself another injury?  Get inside and clean up.  If you have to do something, do it inside the house where you are safe.”

The other half of my body argued back.

“Feel the mud!  I feel like a kid making a big mud pie.  I’m not hurt so what’s the harm?  Feel how squishy the mud is between my toes?  I lost my sandal somewhere in the water.  It’s not that deep anyway.  It’s probably easier to dig up the dirt anyway even if the water weighs it down.  I can’t tell what I’m digging because I can’t see it, but I can feel it with my feet.  This is so much fun!”

After a couple of hours of “fun”, the other half of me finally won out.  So both sides were now in agreement again.  I dragged my muddy body with my shovel out of the hole and turned around to see what I had accomplished.  I laughed when I saw that one couldn’t tell because of the water in the pond.  But I knew, and with that sense of knowing, I felt proud that I did it even if my body did complain later on and into tomorrow over my aches and pains.

Multiple Sclerosis aside, this was as close to normal as I have felt in quite some time.  I was stubborn, and determined to do what others might think I shouldn’t do.  The world does not revolve around them, it revolved around me today.

 

TRY TO REMEMBER

Im confusedI’ve been seeing the man in the moon into the wee hours of the morning.  Every time I try to sleep, I can only do so for a couple of hours and then I’m up again.  I’m told I have very dark circles under my eyes.  I didn’t need to be told.

My mirror reflects back at me the sight of a woman who appears ill.  If I go through the whole makeup routine, then the mirror reflects back at me a woman who appears ill with too much makeup.

I have been busy with so many things that I don’t have time to think.  In fact, the actual thinking that I can do, is mostly disparate pieces of puzzles, floating around in my brain looking for another piece to lock onto to form an entire picture.  That’s not how my brain works any more.

For those of you interested, I have a favorite app that I use for doing jigsaws on the computer.  It’s called Brainsbreaker.  Click on the word and it will take you to the link.  It’s a great way of taking your mind off things.

There is not much to write about when you don’t go out.  I feel like a recluse.  Having given up my car which I regret doing, I find myself like a bird in a cage, looking forlornly out through the bars.  Even if that bird was let out, his wings have been clipped, so he can no longer fly.  If anything, he could hop around from one location to another, but he would still be a caged bird with just different cage walls to look through.

My life at home, of late, has been one of oil painting, playing games on the computer, Facebook, composing songs then painstakingly putting the notes into the score.  Then repeating the whole process when I add a new instruments to the score.

I also keep busy writing my book and in here, although it doesn’t appear that I’ve done much in here lately.

Confusion, insomnia, incontinence, tremors, spasms (spasticity), optic neuritis, falls, loss of balance, hearing problems, paresthesias, peripheral edema, incredible fatigue, chronic iron deficiency, extreme vitamin D deficiency, congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD),  allergies, and a huge seroma in my gut that will be removed in two weeks.  It’s larger than a football.  Add to that a failed carpal tunnel surgery.  I’m sure I’ve forgotten some things but you get the picture.

This is my life with MS.  My days can be nightmarish and usually, people would get their restorative sleep at night.  Oh no!  The man in the moon wants to go dancing!  I waltz away with him till I am literally drooping in his arms.  I’m sure there is a large blotch on the moon to human eyes if someone knew where to look through a telescope. That would be me in the arms of the ever present moon.  He does hide sometimes.  He has a right to his days.

I’m not complaining.  I sometimes put everything down so that I can take a critical eye to the list.  I wish it were a “To Do” list so that I could scratch things off as I heal.  No.  This list is permanently penned to my refrigerator with indelible ink.

If I complain about anything, it would be the discombobulated thinking that I live with.  I actually have a “To Do” list.  I see something that I can do and I start to do it until something else occurs to me.  So then I need to go do that.  However, before I finish that, something else pops into my head.  This goes on all day.  At the end of the day, I have all these things half finished.

Do I finish them the next day?  More than likely not.  I move on with new things that need doing which adds to the confusion in my home and in my brain.  Oftentimes I look at something and don’t know why I was doing what I was doing to it.  I think, “What in the world?”

My other chief complaint is precisely what I wrote above.  My memory.  I don’t know why it keeps playing games with me.  If it were a separate entity from me standing right in front of me, I would smack it upside its head and tell it to get its act together.

I try to remember things.  Say I’m in the bathroom and think that I need to purchase milk.  I tell myself to write it down on the pad that is on the fridge.  By the time I wash my hands and walk out the door, I have forgotten about it.  I will go to the fridge and stand there wondering why I went there.  I open the door and pull out a can of something or other to drink.  Later on in the day, I will think.  Oh I need to get milk.  The whole thing starts all over again.

The fatigue  This is too comprehensive to talk about right now.  I will tell myself to write about it.  LOL

I hope I remember.

 

 

ENABLE YOURSELF

I read your comment with interest.

It takes most people a very long time to get a diagnosis of MS.  It did me.  What’s interesting is this, what they call normal MRIs can, in fact, be abnormal ones.  It depends on who is reading them.

Have you told your testers that you want a copy of your MRI results sent to you?  I would also ask to receive a copy of the actual films, which you can get on CDs now.  I always get copies of everything from every doctor I go see.  This way, if you go see a Doctor, new or old, and they don’t have a copy of the film or the reports, you can bring yours and allow them to copy it.  Don’t ever just give it to them.  Make sure you get it back.

I used to compare my MRI films with those I found online.

The thing is, as we age, we all get lesions in our brains.  It’s the preponderance of lesions in certain areas of the brain, whether they enhance or not, OVER TIME, that eventually leads to a diagnosis of MS.  Or, if you have the right Doctor, it can also be given as a diagnosis when everything else has been ruled out.

Are you seeing a neurologist?  I hope so.  If you find a nice one, stick to them.  They will be your most helpful doctors.

I’m sorry for your anxiety over the lack of a diagnosis.  We all know what that is like.  Most of us had to wait a long time with the same results, the questions on friends and family faces.  They too start to question you.

As far as your friend on that trip, she probably did not realize how bad off you were until she spent a lot of time with you.  Sad to say, her reaction to you is quite typical of people.  Those people who reject you can be handled in one of two ways.  You can try to educate them or you can just push on and leave them behind.  By doing either one of these things, you have taken control of the situation instead of allowing the situation to take control of you and your feelings.  I believe in this case, I would just push on.  If she contacts you then that’s lovely.  If she doesn’t contact you, that’s okay as well.  Expect more of that and then you won’t be surprised or hurt.  It is the arming of yourself with knowing what happens that protects you from debilitating emotional wounds that people can inflict upon you.

Read MS Life in reverse.  Go to the earliest date and watch the progression.  You will learn a lot in here.  Comment and “like” along the way.  It helps the blog.  Also “Follow” the blog and you will receive your blog in your email.

We are here for each other.  There is no need to feel alone.  In the face of adversity, find people who are of “like” mind.  This way you become a part of a community.  It’s helpful.  Be careful where you hang out.  You don’t want to be in groups where the talk is mostly negative.  You want uplifting sites.  There is enough negativity going around.

Pity parties are okay but it gets lonely at a party where no one else wants to go.  Have your party and then leave.

My site’s byline is called “Enabled by Disability”.  Focus on what you can do instead of what you can’t do.  There is much to be done in your life, particularly since you are still young.  Recognize the good when it comes along, not the bad.  Learn to develop a protective shell around you.  Reach out but don’t be surprised if your hands are slapped away at times.  That’s okay if it happens.  It only means that they are not to be a part of your life.

Think of your disabilities as a rebirth.  An ability to rebuild your life using new tools.  Not many people are faced with what you are faced with but see it as an opportunity.  Wake up and take small steps in moving forward.

I always tell people, “If you know you have MS despite what the tests reveal, then you probably do, or even some other form of neurological disease that mimics MS.  Stop waiting for a diagnosis and live your live to its fullest despite having a neurological disease.”

In ending, I would like to use your comment as part of an E-Book that I am writing.  There is no compensation for it, but if you want, you will be added as a contributor to the book.  I won’t specify how you contributed so that people can’t pin that comment to you.  The other thing is that I can use your initials as the commentator without being a contributor to the book.  Either is fine.

If you would allow this, then I will have you sign a release form so that there is no legal problem in the future, not that I would expect there would be.

Thank you for your comment and I hope this helps.

Magdalena

 

MISERY LOVES COMPANY?

Misery loves company?

Multiple Sclerosis, like so many other debilitating diseases that plunder your life with no end in sight, is a disease that wreaks havoc on your life.  My life with MS has taken control for the past several months to a point that I’ve been unable to do much, including writing.

For some, writing might be a release of sorts, but for me, who is trying to relay a message of hope and laughter in the face of unquestionable progression into an even more profound state of disability; it has made me unable to type such positive messages.

The difficulties that have beleaguered my life have nothing to do with MS.  Unfortunately, however; we all know that any traumatic events in our lives will set us back.

I love writing.  I love composing music.  I’ve been unable to do either one.   My pianos sit quietly waiting for me, all the while collecting dust.  I won’t let anyone touch them to clean them because I simply don’t want anyone touching my instruments.  They mean too much to me.

I pass the dusty pianos many times a day.  I look at them feeling guilty, however; the pianos aren’t judging me.  They sit there quietly waiting for their lover’s touch.

Writing?   I have done everything else at my computer except write a decent piece of work.  I’ve played games, done day trading, gone on Facebook only to log off immediately, and so forth.  I’ve spent a lot of time watching You Tube videos.  They help pass the time.  Don’t even get me started on why I don’t watch television to pass the time.

I feel as though I’m watching myself from outside of myself.  The one me, looks at me incredulously and mouths, “Why don’t you practice what you preach and pull yourself out of this?”  The other me, looks at me and thinks, what a mess!  She needs to get her hair and nails done and then she would feel better!  Hmpf!  Then there is the real me, a combination of all; the cheerleader, the vain, and the artistic one. This me knows that I still have some huge hurdles to get through still.  I need to prepare myself for them by sheer will power.

I need to do this on my own.  It is what I’m accustomed to and what I prefer.  I find resources along the way to help me.  What I hate is this.  People who love me want to help me.  They think that if I lean on them that somehow, they will be able to alleviate the things I feel.  It doesn’t work that way with me.  They don’t seem to understand, although they should by now, my methods of dealing with pain, be it emotional or physical.  It’s a private ordeal that I go through and no amount of “talking about it” to anyone; regardless of how close they are, will alleviate or ease anything.  It’s presumptuous of them to think that they can do anything about it at all.

I understand that what I’ve just written is rather cruel.  I would think that by now those that love me, already know that I am like a person who has just stubbed their toe.  I don’t want someone running over and touching me and saying, “Are you okay?  Can I help?  Where does it hurt?”  You know how it is?  You want to slap their hands away and let the pain ease off on its own before you can even begin to speak or interact with someone.

All of this doesn’t sound like me.  Does it?  It does, if you knew the painful young life I led, but that’s for another book.

 

WORD TO SELF:

Misery in your world does not love company.  Misery is a private issue for you and it hurts like hell to write it down on paper for all the world to see.  But you’ve done it!  I’m proud of you.

Emotional Misery: 

There are some people in your life who think you besiege yourself with living in past and just keep harping on it.  To some point, this is true but only with the people who are a part of that story.  A resolution that satisfies you must be settled and until it is, you will continue to take the steps needed to resolve some issues.  You will not allow people to ride around on their mighty self-righteous horses stomping you down into the ground.  You continue to stand in the way of their steeds until they are ready to life you up on the horse with them, as is your due.

I caution you.  You know that saying about bringing horses to water but you can’t make them drink.  This might be the case for you.  I know.  This is the crux of your misery.  It is up to you to decide when these people are no longer a viable part of your present life.  You have to let them go.  You can’t force people who are convinced they are right, that they are wrong.  They are unyielding to you.  Why do you yield to them and give them this power over you to make yourself miserable?  Think about it.

Physical Miseries: 

You know that you have this uncanny ability to spring back from physical injury.  You’ve had several surgeries already and its only April.  Now you see another huge one looming ahead.  Face it!  You’re afraid of this one.  You think that you’re not strong enough to get through it because you are already so weakened by various hospital stays this year, right?  This is true.  You may die?  This is true.  You may die anyway from some other ridiculous thing that comes your way even prior to surgery, right?  We all die.  In the face of reality, if you can accept the reality of what may or may not happen, it’s no longer something to fret about.  Take it step by step and prepare for either case.  You get through it or you don’t. 

There are things to be done if you don’t.  Do them.  Remember your “5-minutes At A Time Philosophy”?

Practice it.  You’ve let the ball drop in your panic.

Doctor, Doctor

As I look ahead at the week before me,  I see that, as usual, it is dotted with medical appointments.  The sad part about it is that, I can’t always tell which doctor is for what. The doctor’s names get all jumbled up in my head and I have to think deeply, now what is that doctor for–my MS or for my CHF (Multiple Sclerosis and Congestive Heart Failure respectively)?  Another sad part about it is that, for the most part, these become occasions much like an outing to me.  Why?  Well let’s get back to the topic of what this site is about.  MS Life.

A life with Multiple Sclerosis is not all that different than a life without it, if you want my two cents worth.  Whoa!  I can hear you yelling at me.  Hang on a bit and I’ll explain myself.

Come on now.  To the world at large, unless we are obviously wheelchair bound; we don’t look like there is anything wrong with us, sitting still that is.  Me, it would be a bit different because I hang down to the right, meaning my head and body slouch down on the right side.  This isn’t always the case.  When I get my Botox injection every three months, I can almost look normal standing or sitting.  It doesn’t help that I have ACH (Arnold Chiari Malformation), as well.  They had to remove several vertebrae in my neck.  I slump because of that as well.

Many in wheelchairs aren’t glaringly disabled.  Right?  We have to have them.  I own one.  I use it whenever I know I have to walk around for a long time, or go on trips.  People don’t know that we can’t walk a straight line or that the fatigue that sets in is like we’ve just been saddled with two blocks of cement around our ankles, prohibiting us from walking more than a few steps.

What about our “drop foot“?  I know that at my worst, I actually was knocking myself right off my feet because my feet were always catching on something that tripped me up.  I should wear my orthotics but I’m in need of new ones.

We don’t present as disabled people to the outside world.  It’s an uneducated public that we contend with.  Still, we go about our business just like anyone else despite extreme fatigue, multiple paresthesias, pain (yes there is pain with MS), and numerous other problems including incontinence.  Most of the things we struggle with aren’t glaringly obvious to the world-at-large.  We go about our day and not many people will know that we are ill so that’s where my “two cents’ comment above came from.

Life with MS IS not a normal life at all!  We just try not to shove it down anyone’s throats. We are polite about it.

  • We smile, maybe too much.
  • We laugh, maybe too loud and too often.
  • We are reliable, oftentimes when we should be in bed.
  • We run our households, because there is no one else to run it for us.
  • We look great, thanks to visits to salons or nail places.
  • We volunteer and step up to the plate, even though people won’t do that for us.
  • We create and work, like others.
  • We are moms and dads to our children.
  • We are husbands and wives and try like heck to please each other.
  • We try to keep an even temperament, even though we want to scream and yell at the world.
  • We are charismatic and charming, even though we are weeping inside and craving solitude.

Getting back to my original point about doctor visits becoming occasions for me.

There is such a war that goes on every day in our lives for both healthy and disabled individuals.  It becomes more intense for the disabled.  (I HATE using that word “disabled” but for lack of another one that describes our daily lives, it’s the best one to use.)  We appear one way but our lives are significantly different than the book cover we wear.   It’s difficult to explain what I’m trying to get across.

You want to go out, but then you don’t.  You want to have sex, but then…ugh.  You want to get up and get dressed.  Hours later you’re still in your pj’s.  If you look at the bullet list above you get the idea.  You aspire to do it all and yet you don’t give a fuck if you don’t any of them at all.

We are inconsistent!!!  We are consistent in our desires however.  Think about it.  Let’s say you have a terrible flu.  You have a fever.  You feel hot then you have the shivers.  You want to sleep but then you want to get out of bed.  You want to clean yourself up but the thought of jumping into the shower seems like so much effort.  You want to clean the house because it’s a pig sty, but you snuggle under the blankets and go back to sleep.  Blah, blah, blah.

This is our life.  Life with MS.  24/7, 365 days of the years!  No getting away from it.  It is what is is.

Going out to see my doctors?  Hey, it could be great fun or it could be, “I think I’ll call and cancel.  Now let’s see.  What excuse did I use last time?”