Thursday, April 6, 2017

Zzzzzzz

     I have found myself sleeping a great deal more lately and I haven't been able to put my finger on just why that is. Rather than do research and freak myself out I reached out to my homies around the country who have ALS and asked them what their sleep schedule looks like. One dude is apparently Superman because he goes to bed late and gets up early. If I did this my poor caregiver would be mobbed by obscenities. Another buddy was completely different. He said he goes to bed when he feels like it and might not even get out of bed the next day until dinner. Mind you, these dudes are similar to me, relying solely on their caregivers for essentially everything.
     The last week or so I'm ready for bed at 7pm. It's definitely disheartening because the sun is still out and I know beautiful evening weather is just around the corner. Once in bed I rarely pass right out. My body stretches out fully, pressure points change, and I put on my space mask (aka my bi-pap). Once my space mask is on I usually get my cuddle on with the wifey, either watching How I Met Your Mother, Teen Mom, or MTV's: The Challenge, all awesome shows so don't bother hating. Once Michelle calls it quits we set up something for me to watch that will stream without needing to touch any buttons on my phone and will eventually time out around midnight when I fall asleep. Now in the morning, I'm typically awake by 9:30, so I clock about nine hours of sleep but sixteen hours of wearing my space mask that gives my lungs a break and chance to recuperate. Then, depending on the day, Emily or Michelle give me morning meds in bed, followed by leg and arm stretching leaving me in bed streaming something again for at least another 90 minutes.
      As I read that back that's a hell of a long time in bed. I wish my body didn't need that kind of recovery time. However, the moment I pity myself I think about the thousands of people with ALS who are confined to their beds all day, or who don't have a wheelchair equipped like a James Bond car to get around in. That's when I talk to God and ask him,  "how I can make an impact today?" As I've stated before in this blog, by the Grace of God I will use my wakeful hours to advocate for others with ALS and the less fortunate, I will raise money for a cure, even if I don't get to reap it's benefits, and most importantly I will spread love and joy through God's word, loudly and tenderly right before I close my eyes.


3 comments:

  1. As a sign of gratitude for how my husband was saved from ALS, i decided to reach out to those still suffering from this.
    My husband was diagnosed of ALS in 2013 and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, he always have trouble swallowing , and he always complain of Weakness of the body . we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and he left the contact of the doctor who had the cure to ALS. I never imagined ALS has a natural cure not until i contacted him and he assured me my husband will be fine. I got the herbal medication he recommended and my husband used it and in one months he was fully okay even up till this moment he is so full of life. ALS has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony.

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  2. hello viwers My name is pamela Gard from usa, i was diagnosed with Hepatitis B for 2years and i lived in pain with the knowledge that i wasn’t going to ever be well again i contacted so many herbal doctors on this issue and wasted a large sum of money but my condition never got better i was determined to get my life back so one day i saw Mrs Isabella post on how Dr paula saved him from the VIRUS with his medicine i contacted Dr paula we spoke on the issue i told him all that i went through and he told me not to worry that everything will be fine again so he prepared the medicine and send it to me through courier service and told me how to use it,after 14days of usage I went to see the doctor for test ,then the result was negative,am the happiest woman on earth now ,,contact Dr paul on his email address dr.paulamedicina@outlook.com today and get your cure.
    you can also reach him on his whats app number+2348128311475. am sure he can also cure any type of disease like HIV/AIDS.
    this is my number you can also call me and confirm+16623462495../

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  3. MY HEALTH IS RESTORE
    i am so happy to share this testimony with the world because generally there are so many doubts about the cure of hpv and cancer This is real take it serious, i am so happy that today i can give this testimony to the world and also help in saving life of people who has been condemned for death just as i was ,who will believe that herbs can cure hpv and cancer completely from the body, i never believe that this will work, i have spend a lot of money getting drugs from the hospital to keep me healthy, it got to a time that all i was waiting for is death to come because i was broke and i already have strong outbreaks from the hpv, one day i was going through the internet asking questions online just to know more about the latest development in the medical sector to see if there is still hope then i stumbled on a post about about this great man called Dr. Ehiagwina through a publicly made a testimony on how she was also cured of ALS by this herbal doctor who is well known for his strong ancient herbal practice at first i doubted both the woman and the doctor just as so many that see's this post would doubt because medically it has been proven impossible but later i decided to give him a try so i emailed him I did not believe him that much, I just wanted to give him a try, he replied my mail and Needed some Information about me, then I sent them to him, he prepare herbal medicine and sent it through Courier Service for delivery, he gave my details to the Courier Office. they told me that 3-5 days I will receive the package and after receiving it, i took the medicine as prescribed by him at the end of 13days that the medicine lasted, he told me to go to the hospital for a test, and i went, surprisingly after the test the doctor confirm me hpv negative and cancer disappear i thought it was a joke, i went to other hospitals and was also negative the doctors were speechless and i said it was a miracle, thank you sir for saving my life even if you cannot see this post i shall never stop testifying the impact you made in my life by restoring back my life when i was being stigmatized and even avoided by family and friends , I promise I will always testify of your good works. Dr. Ehiagwina contact: ehiagwinaherbalhome@gmail.com OR call +2348162084504 you can also add him on whatsapp.

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