A Day In The Life of The ALS Lady…

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I woke up not feeling well. My birthday was coming up and I really didn’t want it to come. I was tired. I am tired. But this day was a Saturday and I had family coming. My Aunt Paul and my beautiful sister-in-law. I just wanted to sleep but I put on a smile because that’s what you do. No need in making the people who I love worry more than they already do, you know?

Thanksgiving was the next day, some people celebrate it on the Monday but I know that my family will be getting together on Sunday. I am going to miss another holiday. Maybe that is why I am tired, right? But I have a fever too so maybe not.

It’s a holiday weekend so the hospital is running short-handed. Typical, something I’m used to but still hate. It means that they will stick a nurse who doesn’t know my routine with me and I will probably get hurt. Plus I have a fever and I really just don’t need that right now. I try though because it’s not their fault. I’m tired though.

I smile when my Aunt Paul gets here. She does sooooooo much for me. She comes in and before she starts with me she does things like water my plants, fixes any flowers I have, sometimes she brings me flowers to brighten up my room, and generally makes my room tidy. The hospital has had so many cuts during the years that I have lived here that the cleaners are over worked. So are the nurses.

My Aunt Paul gets to me and I sit up, she sits me up by using draw sheets to position me. I’m dead weight so the draw sheets are essential. She combs my hair, washes my face and cleans my glasses so I can see. Boy, do I wish I could see without glasses. Of course, that is the least of my worries. I’m thankful that I have an Aunt who loves me so I don’t tell her that I feel like crap. I don’t want her to worry because she has a lot to do when she gets home. Thanksgiving dinner doesn’t cook itself.

When I am up and ready, she gets my ice cream from the freezer in the lunch room. Ice cream that she has made. I come up and write the recipes but she has to make them. Another thing I’m grateful for. I have posted some of my recipes, have you tried them? They are so good!

I love the first bite of each flavour. It reminds me of the foods that I can no longer eat. Pumpkin pie, a tall mug of mochaccino, peanut butter and jelly toast, apple pie with caramel and dark chocolate cheesecake with raspberry and white chocolate swirls! And so many others! I couldn’t tell you which is my favourite. This brings me such joy that I forget, for one minute that I feel like crap.

When my sister-in-law gets here, I smile again. I’m happy to see her and I don’t want her to worry. We have a great visit. I listen while my Aunt Paul and Donaria talk. I’m not really part of the conversation but I listen. I want to contribute but I can’t so I listen. Do you know what is funny? I was never much of a talker. I have always been more of a listener. Don’t get me wrong, I would talk but generally I was happy listening to the group. Now I can’t talk and all I want is to say something. ANYTHING!

After Donaria leaves, I have to make a decision. The nurse is new and does not understand my grunts. Do I get my Aunt to tell her that I think that I have a fever or do I let her go home and not worry? Self-preservation kicks in and I ask my Aunt if I feel hot? That’s it. The nurse takes my temperature and, of course I have a fever. I know my body. You can’t help being in tune with your body when you are a prisoner in it. Do you know what happens next? I have to try to tell the nurse to call the doctor! I mean, come on people! I have ALS and now I have a fever. Shouldn’t that be automatically done?! Anyway, I am now on antibiotics, again, and tests are done. It takes them three weeks to do the tests…

Before my Aunt Paul leaves, my bed makes a huge crashing sound! What the hell?! I don’t think about it because I’m tired so I just sleep a little. Later that evening, I need to go to the bathroom. I have another new nurse for the evening shift. The day nurse didn’t tell her that I have a fever… Only that she needs to get a sterile sample of my urine. That means she has to first, find a sterile bed pan and then wash me front to back beforehand. So I need the bed pan so she runs around looking for a sterile one. Not an easy task in this hospital. Cuts, remember?! Now, remember the loud crashing sound that my bed made? Yeah, now I find out just how bad things are. The motor that sits the head of the bed fell apart. Like, literally fell apart!!

Have you ever tried to pee lying flat on your back, in bed? Completely impossible let me tell you. Well, it was for me. My nurse’s solution? Get another nurse in to help me sit up. So here I am, half-naked from the waist down, a rag doll that has no control of my muscles being sat up by two tiny young girls, my head flopping around with these two nurses straining to sit me up so I could pee! Ha! Can you picture it? It was hilarious and though I didn’t feel well, you just have to laugh! Of course, I could not pee. I mean come on!

Anyway, the nurse called maintenance and a new bed was brought up. Well, first he came and tried to fix it but after hearing the noises it made, he called the time of death at 9:30 pm. lol I got a new bed and then peed like a racehorse! And the nurse got her sterile sample. All was well, except for the fever…

Now, did this happen all in one Saturday? I’m not sure but probably not. The days run into each other. That is what happens when you are locked in your own body. I would say that it is similar to being in prison but I don’t think it is. In prison a person can go outside and enjoy some time in the yard. They can lift weights, read books, fight if they were so inclined and believe me that I have been so inclined!

I don’t begrudge my life. I am happy that I am still here to see my family and friends grow, find love, have children, progress in their careers and just become the people who I knew they could be. And I get to help them with my words, my love and sometimes financially. If I weren’t here, I wouldn’t see that my nephew loves playing football. That my niece is crazy talented artistically. My other nephew has become so thoughtful and caring that I want to cry and thank God for him.

Here’s my point. Things could be worse. No matter what you are going through, things could be worse. If that is true for me, it is also true for you. Remember that…

God bless you all.

 

7 thoughts on “A Day In The Life of The ALS Lady…

  1. I love you Lisa,
    I so wish we could have WAY more time together. I think we have quite a bit on common.
    I just read your blog and had to chuckle at a few points…..shortage of staff and the breaking of the bed. LOL
    I am so very grateful to spend time with you even though the visits are way to far apart. With working six days a week, which I hope will only be for a few more years, sure doesn’t give me much time for anything else.
    I love the pictures you posted.
    Also, I just downloaded a lot of genealogy to Ancestry.ca
    I am not sure if you have access to that let me know.
    Talk soon
    Darlene

    Liked by 1 person

    • I love you too! I’m on Heritage so maybe you can email me a link or invite to Ancestry? Also, if you have your DNA info, you can email that to me as well and I can compare it to mine on My Heritage.
      Miss you lots!! xo

      Like

  2. Your words bring us into your world and when it comes to ALS awareness this post is what everyone needs to read. In fact everyone needs to read this.
    Your posts are relevant, interesting, imaginative, humourous, cheeky, sometimes naughty but especially they are you and your love.
    PS- Maybe when I retire I will make all your ice cream recipes and ride one of those ice cream bikes and sell your ice cream flavours. I would call it “All Lisa’s Sundaes” ALS and proceeds going towards whatever the ALS community needs. I hope someone in every city does it.

    Liked by 1 person

  3. Dear Lisa, I applaud your courage and sense of humour and so wish I could wave a magic wand…I smile and cry at some of your posts …I wish life had dealt you a different hand of cards but I can see how many people love you and are touched by the person that you are…God Bless you 🙂 xxxx

    Liked by 1 person

  4. Hey girl, LOVE the pictures. I’m so sorry you had to go through all of that. Sometimes I wish common sense were a little more common. Sadly, it is not. I hope you’re feeling better!!! I admire your ability to always find something positive in what you’re going through. I’ll come by soon for a visit.

    Liked by 1 person

  5. Amazing insight into your days. I remember your love of life from the time we were kids until even when I visited you at your house in Oakville. It never went away and am overjoyed that you still have that same positive demeanour when the rest of us would have given up. The last time I visited you I cried because it wasn’t the Lisa I remembered; I was too stupid to realize that Lisa is always there, alive, well and as determined as ever. Your body doesn’t cooperate anymore, but what we (and everyone in this group that follows you) loves about you is the thoughtfulness, intellect, smart ass, fighter part of you.

    Thank you Aunt Paul for what you do, You are an angel. Aunt Lou is smiling.

    I learn from you everyday Lisa. You, my sweet sweet cousin, are my hero.

    Liked by 1 person

    • Awe… Now you have me crying! I love you too my sweet cousin. I know that it is hard to see me withered and so so skinny. It makes me think about seeing Nanny and Grampa at their Wakes. That is how I remember them now and I think, is this how I want people to remember me? My friend recently asked if she could come see me and I had to think about it for a moment, you know? Is this how people will remember me? Then I thought, this body is not me. So I posted pictures of me as I am now and that was that. I hope that you come and bring me some flowers soon. I love you xoxo

      Like

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