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Tired????
<p style=”font-weight: 400;”>Hard Headed! Head strong! Strong willed! Are you like me? Do you want to be independent in everything? I have had put my pride, ego and hardheaded-ness aside because of my disease.</p>
<p style=”font-weight: 400;”>But, when you do exert yourself, how far can you go without, “rest?” My rest is when I find a chair and hang my head, arms and torso and simply breath. Heavily. How do you feel? I feel, as if, I ran a marathon.</p>
<p style=”font-weight: 400;”>????</p> -
6 Replies
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Eric,
Great thought, I just figured out that I have to let people help me. I am 60 now and all I ever wanted to do was help people. I did this to show my love for them. Now this disease has humbled me. Now I have to let people show their love for me. I do not think I will ever stop being hardheaded. I am just recovering from Covid, took my first 15-minute bike ride. Off course I climbed the biggest hill around to see if I could do it. Bull head intact.
I do feel tired all of the time, but I do not let that stop me. I let Covid slow me for 2 weeks but no more. I do not want to give up anything, I know I will have too but I will fight against it. I fall down a lot more now as i lose my balance. I have more band aids on my knees than I ever had.
My lungs are doing OK. I am in the courage trial now. Not sure I have the drug or not. I want to start taking AMX0035 today. But the world will make me wait.
Let people help you but never give up that bull head!
We are two bullheaded brothers.
Any more brothers or sisters out there who are bull headed?
Let’s kick this diseases butt!
Jerry
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Love it!!!! We definitely are twins. I mowed my neighbor’s property for years because he was sick. Now, I had to put my pride aside as my neighbors came together and mow my property and built me a ADA ramp. Love others!!!!
eric-
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Though recently diagnosed with ALS, as I think back I’ve probably exhibited signs of ALS for at least 3-4 years. Now, I feel tired after walking with a cane after going a block or two. I recover after sitting down for 15 to 20 minutes, but I can’t sit on a low seat, because then I can’t get up by myself. I keep a positive attitude though and remember what my new normal is like. Think before moving!
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Pete, here is something for you to try…
My leg muscles became so weak I almost fell (more like a plop) onto chairs and needed help to stand. Low chairs were miserable. But, I found that at 8 yrs into having ALS I could actually rebuild my leg muscle strength. The key is to do 1-2 repetitions a day… then 3, then 4…
You can read about what I did and how here: https://alsandwellness.blogspot.com/2020/02/the-power-of-just-one-chair-squat.html
Good luck, let me know how you are fairing.
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Thanks Dagmar I’ll try it!!
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I’m 9 months into my diagnosis and while the way I do my activities has changed, my goal for them and execution has not. I kept my basic running training program and changed it from ambulatory to wheelchair based. I just completed the London Marathon in about 7 hours, 50 minutes. After only having the chair a week! I am now completing my ‘off season’ and getting ready to train for Tokyo Marathon March 5th.
I make sure I get rest. I stay in bed 8 hours a night. I don’t train every day. I keep up the momentum though.
The strong headed indepence part is the hardest to adapt. I find I am learning graciousness and humility and I practice it when people offer to help me. I now let them. Expressing gratitude is very restful.
Thank you Eric for starting this conversation and I’m grateful to the others here for there insights. I got some great wisdom here.
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