The Disease That Changed My Life, Living With ALS And The Silly Things I Miss

Man,  I have to tell you that after being gone from my blog it sure is hard getting back into it. If you add in my health issues, you certainly have a recipe for disaster! Speaking of my health issues, I realize that some of my readers don’t actually know that I have a disease. I am guilty of not always reading your About pages so I can’t blame anyone. Plus I post mostly my recipes or the recipes that I find great from you so how can I expect any of you to know that I don’t eat by mouth. Well, except for ice cream but even that is against Doctors orders. HEehee

I have ALS. It is pretty advanced. I live in a long-term Hospital and I never leave my room… Or my bed. I can no longer speak unless you count the barely understandable mumbling that I can manage. I have a feeding tube that is constantly getting infected for some reason. Needless to say, this disease has changed my life in ways that even I couldn’t have guessed 13 years ago when I was first diagnosed.

Do you know what ALS is? Don’t be embarrassed if you say no. I had no clue what it was when the Doctor told me. I knew it was bad – the Doctor had his this is serious face on – and I had an idea that the diagnosis would change my life but not to the extent that it has. So for those of you who don’t know what I am talking about, I think that I will give you a little information about ALS and then I will provide you with a link in case you want more information about it. Before I copy and paste some info, I should tell you that I am in the 2 percentile who live longer than the usual 2 to 5 years that most ALS patients get with the diagnosis. I have not decided yet whether that’s a good thing or not. Don’t get me wrong. I am happy to be here. I have gotten to watch my nieces and nephews grow up. I know that they are great people with some amazing personalities but they don’t know my personality.  It’s hard to live in this body that has become my prison while being completely cognizant of your situation…

What is ALS?

Amyotrophic Lateral Sclerosis (also known as ALS, Lou Gehrig’s disease, or motor neuron disease) is a disease that gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe.

ALS is not contagious. There is no cure for ALS and few treatment options for the majority of people living with the disease. Approximately 80 per cent of people with ALS die within two to five years of being diagnosed.

I copied that from the ALS Society of Canada. If you want to learn more, here are a few links for you…

The ALS Society of Canada

The ALS Association

The Project Revoice

Okay, you have to watch the video on the last link. I just bawled my eyes out watching it. What I would not give to have my own voice back! It’s something so simple but your voice, it says sooooo much about yourself. I can’t explain how important your voice is. I also miss my laugh. Something so simple…

Did you do the ice bucket challenge? Did you know that it was about ALS awareness? If you did, did you also know that it gave you an insight into what it is like to live with ALS? You know the instant immediately after you are hit with all of that icy water and your nerves react causing all of your muscles to freeze? That is what it feels for us only all of the time. It is frustrating, painful and completely out of your control. Oh, and if you get cold… Yeah, not fun and extremely painful. Imagine all of your muscles constricting painfully until you get warm again.

Now, I can’t really complain about having ALS. I have learned a lot about myself since being diagnosed. Things that I am sure that I would have put in the background while I took care of everyone else in my life. It is just who I am. I’ve always had that urge before my Own needs.

Do you know why else I can’t complain about having ALS? I met my husband when I moved into this Hospital! Woo hoo! And he was hot! Lol Back then, I was able to get around in my wheelchair. We had a lot of fun together watching movies, playing footsie – neither of us could move our arms but we could move our legs enough that I could reach him in his bed and he could hook his leg down off of the bed and grab my foot if I was not fast enough for him lol! – we talked, with our computers about our hopes and dreams and you know, I think that we got to know each other on a level that I don’t think you can unless you are both facing your end. I know that he is waiting for me to meet him when it’s my time.

Okay, enough of that sad stuff! Let’s talk about some silly things that I miss! It would be easy for me to talk about the things I miss – food, talking, walking etc etc etc – but let’s talk about the silly stuff that you probably wouldn’t even think of…

  1. I really miss picking my nose! Ohhhhh, don’t get all grossed out on me. I’m not talking about ramming my finger up my nose and digging for treasures like kids. I’m talking about using kleenex to dig out those boogers! Come on, you know that it would drive you crazy if you could feel something hanging out of your nose and no way of cleaning it!
  2. Waxing my body! I am a hairy monster, let me tell you. I have always had this thing with body hair and it really bothers me. I can probably French braid my armpits!  When the fan hits my legs, I can feel the hair blowing in the wind. Shudder! lol
  3. Going to the bathroom. As embarrassing as this is to admit, I really wish that I could sit on a toilet instead of a bed pan. The privacy of closing a door while sitting on a toilet has become a foreign concept to me. Do you know how many people have walked into my room while I was doing my business? Hell, the cleaning staff at the Hospital have seen me naked from the waist down! And the hairy legs and other areas, if you catch my drift… Again shudder!
  4. One last thing… I miss my life. Okay, that’s not silly but it is true…

Enough of my ramblings. Going forward, I will post fewer posts because it’s so much work. Worth it but a lot of work. Talk to you soon!

Our Wedding 001

My John at Our Wedding – April 21st, 2012

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Me now with my computer 

 

 

 

19 thoughts on “The Disease That Changed My Life, Living With ALS And The Silly Things I Miss

  1. Thank you so very much for sharing your story, the good and the bad. I had a friend from high school who had ALS. They carried him in his wheelchair up Machu Pichu. I love your blog and am even more in love with it now that I know your syory.

    Liked by 1 person

    • That must have been amazing for your friend! I too did some traveling while I still could. Nothing to that extent but places with special meaning for me! I love your blog too! I love reading about your beautiful family. Xo

      Liked by 1 person

  2. Hey lil’ one!
    You are an amazing story teller. I never knew you n John played footsies – also I tell the kids about your personality n character all the time. Matthew recently delivered a presentation where he showcased his funniest moment. It was a picture of you and him. He was about 9 months old. He had snatched your glasses off your face and licked them up real good. You are both laughing in the pic.
    … and I can hear that devious out of contol top decible laugh of yours right now … you know the one that makes me laugh so hard my face and stomach hurt … the pee your pants, crack me up kind.
    I love you big like the sky xox

    Liked by 1 person

    • I remember when that picture was taken! I was holding him – with help of course. I miss my laugh I think more than my voice. I wish that I had the wherewithal to record both back before I started losing them. Wouldn’t it be great if my computer spoke with my voice and laughed with my laugh? I’m glad that I’m here for you and the kids! Xoxo

      Like

  3. Lisa…I have known that you have ALS for a while now and my admiration for you knows no bounds, your sense of humour is wicked and your love ice cream… and why not??? BUT I am so sorry as I didn’t realise to what extent the simple things in life mean to not be able to do and I should have… me bad, very bad as they say…I hope your new Pc is sorted now…Much love and hugs xxx

    Liked by 1 person

  4. This post is truly inspiring. You are an amazing person with so much to teach us. The wedding picture is beautiful. I hope you will find the strength to continue to post as I will look forward to reading whatever you have to say.

    Liked by 1 person

  5. Pingback: Lisa…Living with ALS… | Retired? No one told me!

  6. Oh my thank you for sharing the rawness of having Motor Neurone. I think as we sit in our lounge chair and say oh that wouldn’t be nice…we don’t actually know the half of it. I thank Carol for sharing your post so I too could learn and know you and know more. Much love xx

    Liked by 1 person

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