Showing posts with label never give up. Show all posts
Showing posts with label never give up. Show all posts

Wednesday, March 16, 2016

Chronic Illness: How Quickly Things Change

My life used to revolve around work, exercise, and whatever little bit of social life I had.  Now it revolves around doctors appointments, tests, medicine refills, and constant worry about what the future holds. A person can go through life day after day doing the same routine, never knowing that one day it can all change and become a very different kind of routine. The kind of routine some people are lucky enough to never experience.

I spend my days scheduling appointments, collaborating my schedule with my daughter's so that she can either take off of work or find other child care, and keeping track of when was the last time I took what pill and when do I need to take another one. I'm almost always tired, I can't drink alcohol, and my social life has come to a near screeching halt. It's tough to muster the energy to do anything beyond care for yourself when your body is nothing but constant work. After a day of fighting pain, with every movement hurting so badly you dread just putting on your shoes, all a person wants to do is lay down in bed and stay there. Being social and having "fun" is a thing of the past. I do my best, but it's slowly slipping between my fingers and just another aspect of my old life falling away.

I will not let this become my normal. This is a temporary mountain I must climb, as I've done before, and will do again. At least this time I'm one step ahead by being more educated and having the strength I didn't know I had before. This time it's going to happen on my terms.

I just want my life back, but the unfortunate truth is I can't have that until I get my body back. The biggest question haunting me day after day is; will I ever get it back? I wish I could have been one of the lucky ones who never really had much more than a bad flu or a broken bone, but I'm one of the "lucky" ones who's had several different medical conditions that are not just an annoyance, but a complete life changer. I've learned to accept that, and in fact I'm starting to embrace it as possibly that's what I was put here to do. Maybe my purpose in life is to suffer these ills so that others don't have to in the future. Or, at least that's what I tell myself so I don't go completely insane constantly wondering "why me?".

All I can do is keep telling myself, and believing, that I will persevere. I press on - going to the appointments, taking the medications, doing the research, trying my hardest to do every tiny thing physically possible to keep my lower half moving and flexible despite its constant fight to cease up and be useless. I will not let that happen. I will fight. I will never give up.

Sunday, September 12, 2010

Day 254

I have a new walk.  I have begun to favor my stronger leg (the right), and now have a kind of limp.  I know this is a great development as it means my brain/body connection is getting stronger, and my body wants to walk normal, but is still unable. 

I am still in shock that after only a little over six weeks I have come as far as I have.  I still have a very long way to go, but the fact that I'm gaining muscle, feeling, flexibility, and strength has me overjoyed.  This means the nerves still work, and although I might have a few leftover side effects, I should be able to walk unassisted without many problems! 

Step count today:  556

Steps I'm ahead:  13,804

Thursday, July 22, 2010

It's Settled

I am sure you have noticed I've been having some trouble settling on a background for this blog.  I can assure you I have found it, and it will stay this way from this moment on.

I finally arranged it the way I like, so all that was left was the color scheme and layout.  I liked the color I had before, but it just seemed too dark and ominous.  I like the fresh look of the white and the crisp lines of the white with the blue.  I wanted something cheery and inviting, and I do believe I have found it.

Do you like it?

Wednesday, July 21, 2010

It's My Blog and I'll Cry If I Want To

Sometimes it's hard to be sunny and cheery, especially when outside forces insist on ruining what was starting off as a perfectly good day.

People suck.

I spend my days working hard at being positive and doing the right thing.  I don't ask anyone for anything.  So why then do people still insist on making my life a living hell just because they can?  I'll never learn the answer to that question as long as I live.

I spent a large portion of my life being controlled like a puppet on a string, and it seems those puppeteers just keep trying to reattach those strings.  I am much stronger than that, so it will never happen again, but it's still a frustration.  Why bother?  Just leave me alone.  I'm doing just fine right where I am, doing what I'm doing.

Go away.

When did I give the impression I am unable to take care of myself or that I am too stupid to figure things out on my own?  When in my life did I let on that I am unable to be my own person and make my own decisions?  The keyword being my decisions.  Mine in that they are mine, I own them, I make them for a reason, and those reasons, although really none of anyone's business but my own, are good reasons.  Every decision I make is well thought out, made by me and only me, and not influenced by anyone, finally.  Decisions that will make my life better in some way, and ones that will have a positive impact on my future.  So tell me again why you can't just leave me be?

Control.

What makes one person so obsessed with controlling another?  When there are no blood ties, no rings on fingers, and no financial or substantial connections, why is it so necessary to care so deeply what the other person does with his/her life?  I truly believe it is an issue of control and the lack of it.  Where there once was a dynamic in which one person had almost total control over another, and now doesn't, I believe that creates a void in the controller (puppeteer) which they feel needs to be filled once again.

Not.  Going.  To.  Happen.

And I'm not sorry.

This time in my life is a crucial one.  I am on the path to walking again.  Everything I do revolves around my recovery.  In the past, I allowed myself to be weak and vulnerable, and I gave in to natural urges that ultimately got me nowhere.  I self-medicated.  I gave in to giving up.  I failed.

I will never fail again.

To me failure does not lie in not reaching a goal; it's in not trying.  You can't do anything if you don't try, and when you try, and I mean really give it your all, that's success.

This is my freedom we are talking about.  My independence.  A normal way of life.

Perhaps that is the issue.  My independence is a threat to those who want me kept down.  I get it now.

Too effing bad.

What I do with my life, is my life, get over it. 

Some people find it necessary to make other people's lives their business and all about them.  I find it necessary to make my life my business and all about me.

I am stubborn and strong and have been given the opportunity to really work hard at getting my legs back.  Nothing and nobody will stand in the way of that ever again.

Thursday, July 15, 2010

Day 196

I spent some time reflecting yesterday.  I was waist deep in a renovation project and had plenty of time to think.  I decided yesterday would be a good day to finish the new floor in my pantry, remove all the old shelves to make room for the new, and paint the walls.  While sitting on the floor measuring and fitting tiles, I started to think about the progression my body has taken during my journey to walking on my own power.  It's definitely not quite as simple as just getting some long-dormant muscles stronger.  There is much more to it than that, and when I stop think about it, I am in awe at how amazing, and possible things are in relation to the human body and its recovery.

The years I spent sitting in a wheelchair, I didn't often use my legs for much.  I had become so used to them being weak and unusable that I adapted to using my arms for everything.  They basically did nothing more than get in my way.  What a person doesn't realize is when this happens, it's not just the muscles that become dormant, but it's your brain, and the signals your brain sends, that suffer as well.  It's like a blind person whose other senses are refined;  the brain disconnects from whatever part of the body is not being used so that it may focus its energies on the parts of the body that need it most. 

Thinking about this process reminds me of my days in ICU when I was connected to a ventilator.  My diaphragm was paralyzed and I was unable to breathe on my own.  I was on a ventilator for a total of 34 days, and in that short period of time, my brain forgot how to breathe.  When I regained the use of that muscle, I had to consciously think to myself "OK, breathe" in order to take every single breath.  Imagine that for a minute.  On average, a healthy adult at rest will take 12 breaths per minute.  So twelve times per minute, I had to tell myself to breathe.  At night I had to be reconnected to the ventilator.  It only took a few days before the involuntary response kicked back in and I no longer had to think about it, but those few days really taught me the meaning of "learning how to breathe all over again".

The same is true for every other part of my body that was affected by this illness.  To this day, I have to consciously think about lifting up my foot when I walk.  My right leg can pretty much do it on its own, but my left still drags if I don't say in my head "OK, pick up your foot".  It's like disconnecting your car radio:  it's not going to work unless you reconnect those wires.  I have to think about almost everything I do until it becomes involuntary once again.  My brain has to reconnect the wires.  I always used to think that if I could move it and feel it, I should be using it.  Shame on me for not, but now I am learning how to walk all over again.

It really puts into perspective the length of time it takes to recover from any injury, and especially one that completely shut my entire body down.  I can remember when trying to lift a 1-pound dumbbell seemed like the hardest thing I ever had to do, now my arms are so strong grown men have arm-wrestled me -- and lost.

It renews my hope that one day I will be looking back and saying "I remember when I could barely walk 300 steps" as I'm running down the beach, and it reaffirms the mantra I play over and over in my head --  Never Give Up!



Step count today:  936

Steps I'm behind:  5,596

Tuesday, June 15, 2010

Day 166

So, I've been gone again for a few days.  I received some terrible news recently that my best friend passed away, and I needed to deal with that.  I'm not sure how to deal with it, really.  At first I was all over the place with my emotions, bordering on a panic attack many times, until I found out it was what she wanted, then I think I found my peace.

Susan battled with cancer for a very long time.  She was a strong fighting champion, and if you just met her, you would never know what she was really going through.  She always had a bright, sunny smile and nice things to say.  Her death came so suddenly, I assumed the cancer had finally taken over and she had lost her battle, but in reality, she won.  She decided it was time, and she didn't want to suffer anymore.  She took her life into her own hands like she always had and made the decision to let nature take its course.  I always admired her for her courage and willingness to do what needed to be done.  I know that she just knew this was going to continue to be a very long, hard battle, and the only way she would come out a winner was to decide when and how she finally let go.  That takes enormous strength, something Susan definitely possessed.  I will miss her terribly, but I am so glad she has found her peace in this world and I look forward to the day when I see her again.

So now that I am able to function a bit more normally, I am back to my walking routine.  I bought myself some new shoes yesterday, and today I am wearing them without my foot brace just to see how my left foot does.

I have even more reason to work even harder now.  Susan always cheered me on and always believed in me, and I will never let her down.  I can feel her gently coaxing me, telling me I can do it and to never give up!

Step count today:  215

Steps I'm behind:  7,745

Wednesday, June 9, 2010

Day 160

So, it's official, I will be going up north to see my family this summer!  I am very excited about this new development, and have a lot of work and planning to do as I will be going sans chair!  That's right, I will be taking a walker only... eek!

I did very well walking yesterday, and I did it all barefoot, something that has been quite difficult for me over the course of this journey.  The last time I tried walking barefoot for any length of time (over 400 steps or so), my feet would get very fatigued and then turn inward onto my arches and I did not have the strength to get them back straight.  To prevent this, I would simply wear my sneakers and my foot brace.  Yesterday, I didn't need the shoes, or the brace, and I did rather well considering I walked over 800 steps in a somewhat short period of time!

Going on such a long trip without my wheels is something I would have never thought of doing even two months ago.  I have come so far that it's almost unbelievable.  This will be a huge trip, and something I need to start planning for today, but I am up for the challenge!  I'm strong and capable, and I will do this.

The biggest obstacle I see as of now is the airport.  I will have to get there several hours early to be sure they have a chair available to get me through the vast expanse of the airport, to the gate, and on the plane.  No problem there, it just takes planning.  The other obstacle will of course be fatigue, but provided I bust ass walking from now until then, I will do nothing but get into better shape than I am now, and I could do the trip now if I had to.

I will of course be in constant motion up north, going from place to place trying to see as many people as I can while I'm there, but there will always be time to sit and visit, and rest.

Who knows, maybe by then (seven weeks from now) I will be able to just take some crutches.  Those would be easier to transport, although as of now they are not easier to walk with, so time will tell.

The big event will be the trip home.  I am driving.  Driving is the easy part, it's the stops and the walking that's the hard part.  Although, after hours of being on the road, the stretching and moving around will no doubt feel good.

Besides, how can I possibly not be happy on the trip home when THIS is what I will be driving:




And P.S., the lavender house in the background is the house I grew up in!  My cousins own it now.  Yes, it has been that color since I can remember.

I am just vibrating with excitement right now.  Time to get to work!

Step count today:  726

Steps I'm behind:  6,893

Tuesday, June 8, 2010

Day 159

I know, I know, I've been away for a few days.  That doesn't mean I didn't walk or keep track, however.

This past weekend I took some more time on my living room painting project.  I am still in the prep-work phase, but it's getting there.  It's a big living room, and a big project.  We're talking full renovation here, not just slapping on a coat of paint.  I am removing all the trim, which will be replaced later with real wood instead of the plastic that was up there prior, and the actual painting will consist of two coats of primer (the walls are very dry and very dirty) followed by two to three coats of paint.  Plus the ceiling.  Phew!

So needless to say I've been a busy girl, and continue to stay busy, which I like.  If I have nothing to do I get very bored, very easily, and that's when I become destructive.  Idle hands...

So, today I will be getting in some good walking numbers.  Today is one of those days that I put on my sneakers and come sit at my desk, and then intermittently get up and go walk for 50-150 steps at a time.

Step count today:  856

Steps I'm behind:  7,329

P.S.  All of today's steps were done barefoot.  Woo Hoo!

Friday, May 28, 2010

Day 148

I took the past couple of days off of walking.  To be honest, I just didn't want to, and I needed the rest.  My legs have been screaming at me, and I know when to listen.

I am sure that most of you have heard about Matt, the man who quit his job to go "walkabout" across the US from New York to Oregon, but just in case you've just come out from under your rock:

http://www.imjustwalkin.com/

Most people only dream of doing something like what Matt is doing.  I am one of them.  I think his journey is amazing, and I only wish I had the ability to do the same.  The sites he has seen, and the people he has encountered, are incredible.  I'm just blown away by the whole thing.  If I had the resources, I would travel to him and walk beside him as long as I could.

So, after staying up until the wee hours of the morning reading every post and looking at every picture Matt has posted along his journey so far, I am now filled with wanderlust.  The best I can do to cure it is walk in my home and add to my step count, then maybe hit the park later for some much needed cardio.

Step count today:  520

Steps I'm behind:  7,064

Monday, May 24, 2010

Day 144

I got so overwhelmed yesterday that I never got the chance to enter in my blog, so I am carrying over yesterday's step count to today.

Step count today:  623

Steps I'm behind:  6,548

Friday, May 21, 2010

Day 141

After walking 1,103 steps yesterday, my left hip is hurting me a bit today.  I also suffered with a terrible leg spasm all -- night -- long.  My left leg spasmed hard, and quite painfully, from the time I laid down until the time I got up in the morning.  I'm sure it's just the extra movement, or it's pissed off, or whatever.  All I know is it was painful, I couldn't sleep, and it was terribly annoying.

So today I thought I would take it a bit easier in the step department, although I don't seem to be doing that as of yet.

Step count today:  713

Steps I'm behind:  6,624

Thursday, May 20, 2010

Day 140

The day after I did my 1,031 steps, I took a break.  I had company coming, so I had to clean all day, and my legs were feeling the affects from the day before, so I figured it was a good time to rest and let the muscles repair themselves.  Yesterday, I took as many steps as I could muster, but after having company and not getting much sleep, I did just below my daily requirement and then called it.  I figured it's best to be a little short, than fall and get behind even further.

Today will be my day to attempt to squeeze in 1,000 again, and do three miles in my chair.  The miles are getting easier and easier, as I get in better and better shape.  The better shape I am in, the longer distances I can walk before becoming fatigued.  It's all such a great process, and I love how it's making my body feel.  I've always had a strong ticker, and I love that it's getting even stronger with all the cardio I am doing.  It's going to need to be strong to once again pump blood through 6' of standing me!

So, it's off to the races today.  The last thousand steps I did made me feel so accomplished and proud that I just can't wait to get another thousand down.

Step count today:  1103

Steps I'm behind:  7,063

Monday, May 17, 2010

Day 137

Between a visit from my father, and my daughter's 8th grade dance, I missed a few days of walking.  I know I shouldn't let life get in the way like that, but sometimes it does.  I just don't quite move fast enough yet to be able to slow down on those busy days, and walk.  Besides, I think the rest does me good.  I am doing great with the step count today, and am almost to my goal!  I feel strong and motivated and I love it!

Shooting for 1,000 today!

Step count today:  1,031

Steps I'm behind:  7,614

Wednesday, May 12, 2010

Day 132

It has been a great walking day today.  My legs feel strong, and thinking back to how I used to walk, I am taking much more normal steps with a more normal stride.  I can also walk a lot further before becoming fatigued, both in my arms and my legs.  I will shoot for 400 steps a day for the rest of May, and I can't wait to see how much I progress after that!



Step count today:  579

Steps I'm behind:  7,275

Tuesday, May 11, 2010

Getting Motivated - Day 131

I'm having a hard time getting motivated today.  It happens sometimes -- days when I feel like not doing much.  They are rare, but they happen.  Today is certainly one of those days.

So what do you do when you can't seem to find the motivation to do what needs to be done?

Me?  I try not to think about it and just get in "robot" mode, and do it.  Once I start, it seems I forget all about being lazy and unmotivated, and I'm off to the races.

So, the biggest hurdle is that initial hump.  That little push we need to get started.  Afterall, energy breeds energy, so once you are up and moving you will remain up and moving.

Some days my coffee is enough, some days I need something else.  Today, I strapped on my Livestrong bracelet so that the sight of it on my wrist will make me feel even lazier if I don't get up and get started on something (I mean Lance Armstrong rides for like five hours at a time!).  I need to do some crawling, it has been a few days, and I definitely need to do some walking.  Maybe the power of Lance will inject me with the energy I need to accomplish those tasks.

On other days it seems no matter what I do, I just can't summon the energy it takes to do anything.  Those are the days I listen to my body and take it easy.  Afterall, even God rested one day out of seven.

Food is good energy, too.  I just had some of my famous boneless wings (no breading) and a big glass of water. 

It's off to the races I go...

Step count today:  413

Steps I'm behind:  7,580 (eeks!)

I found this and thought I would add it as a tasty treat of motivation:


Yes, that is me, about 13 years ago shortly before my illness.  My motivation.

Saturday, May 8, 2010

Day 128

It is a sweltering day here in Florida.  The humidity is thick as butter today!  Should make for an interesting cardio session later, especially when I add some weight to my chair for an even better workout.

I was tired yesterday, and lacking energy.  We went to the trail to get in our miles, and I was struggling so I called it at one mile.  I felt like such a pansy, but I guess my body was just having "one of those days".  I know something is better than nothing, but it frustrates me when I feel like I just can't go on no matter how hard I try.  For someone who is now doing three miles at a time, one mile just seems like defeat.  I know it's not, but it seems like it.

Today will be better.  I also need to get some more steps and crawling in today.  It will be a busy day of working out so I can make up for being such a weakling yesterday ;^)

I can't wait to get out in the heat and sweat off some frustrations.

Step count today:  277

Steps I'm behind:  7,171

Thursday, May 6, 2010

Day 126

I celebrated Cinco de Mayo yesterday with five miles.  That's the first five mile "roll" I've done since I began training.  It felt great! 

The only downside I can see to doing so much cardio is that it has increased my energy levels exponentially, and now all I want to do is get out there and do more cardio.  I am finding mundane everyday tasks boring and effortless.  These are all good developments, it's just going to take some getting used to.  I am learning to manage the higher energy levels, but I never thought it would be so hard to do.  I'm suddenly like Speedy Gonzales on steroids... ZOOM!

Getting in shape has never felt so good, and with each pound that comes off, and each mile I add to my workout, I notice how much easier it is  to walk and crawl.  I still have my "off" days of course, but I can really start to feel results and I'm loving it.  It has become my way of life that every single day I have to do something to work up a sweat, and something that makes me use my body more than the day before.  It's as if I'm 21 again (I wish). 

Today will be no exception.  Once this coffee kicks in I'm off to do something good.

Step count today:  250

Steps I'm behind:  7,175

Wednesday, April 28, 2010

Day 118

I accomplished what I set out to do yesterday, minus the exercise bike.  By the time I had done my five minutes of crawling I felt like I had just ran a marathon, and I still had to go do three miles in my chair, so I figured I'd save my strength.  I am going to get on the bike today, however. 

Apparently I'm getting in shape again since yesterday's three miles weren't necessarily a piece of cake, but it wasn't exactly hard either.  During the three miles I felt the usual pains; shoulders and triceps burning, hating it at certain points, wanting to stop, but I pushed on.  Afterward was when it didn't feel like I had really done anything.  I was waiting for that "wow, I just did three miles" feeling to kick in and it never did.  I guess my body is getting conditioned and I will need to pick up the pace a bit and start adding distance.  YAY!

I will do some more crawling today and see if I can't go a little further.  Although I did the five minutes yesterday, I had to break for a little bit about mid-point and let my arms go back in their sockets and catch my breath.  I would like to see if I can go farther than 2 1/2 minutes before breaking.  Yesterday it felt like I left my arms on the floor when I had finished, but I guess that means I'm getting a good workout :^)~

This crawling thing is proving to be a very hard workout, and I love it.  I need to try to add as much every day as I can.  Muscles are getting worked that don't normally do anything, even when I walk, so I am very happy about that.  Between the walking, crawling, and miles in my chair I should be a rail in no time!  A very muscular rail :^)

I'm a little less annoyed with people today.  Yesterday was good -- I didn't have anybody bother me at the park -- even though there were lots of people there.  That's how it should be.  I realize that some people are just ignorant, or they just don't know any better, but that shouldn't be my problem, and just because I'm in a wheelchair it sometimes becomes my problem, and that makes me even more upset.  There are days when I can take it with a grain of salt and brush it off as just another clueless person, and then there are days like the past few when I just get fed up with being nice all the time.  I suppose with everything there has to be balance.

The good news is that for every person that says something stupid or does something stupid, there are countless others who totally "get it" and make my life enjoyable.  People like my close friends who don't treat me any differently, yet quietly look out for me and keep my disability in mind.  The cool people in my life who love me for me.  The new people I have met over the past year who have turned out to be amazing, and the people I have known most of my life with whom I have recently renewed friendships.  And, let's not forget those of you who support me and my effort to try to walk again.  I could gush all day about you people.  You know who you are (I hope), and I just want to say thanks.  It's people like you who get people like me through every minute of every day.

Step count today:  341

Step's I'm behind:  6,708