i need something

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i have polymyositis, celiacs, and raynauds. every day i feel so deathly tired. one day i know I will not be able to get out of bed.  if something doesn't change I will be in nursing home within a year and I can't see that.  it terrifies me to be locked up. I am 57 yrs old, and i can barely take care of myself. i am hiring a house cleaner, but i need some one to help with more things (laundy, dishes, hair washing, vacuuming (I am usless) because i simply have trouble using my arms.  If i use them too long, like doing dishes, they suddenling drop and I can't feel them. it takes my breath away quite literally cannot make them move and I can't feel them.  

Assisted suicide is legal here in my state in the USA, but my doc is Catholic and works in a Catholic hospital.. I don't really want to take that rought, but what other choices do i have? I will not live in a care facitly and be fed and have my butt wiped. I will stop eating if i must, but . .  help.

Any thoughts?  

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13 Replies

  • Posted

    Hi Dee,

    I am 58 reynaulds, celiac and polymyositis. I knoe Exactly what you are feeling and coping with. Have you managed the celiac with fresh food only...has your doctor addressed the inflamation with prednisone and other meds? I want to reach out and send a hug, encouragement and tell you I really understand, I am in the same situation. The mental challenge is as big as the physical. I will never check my sense of humor at the door, since there is always someone who will need you and someone who has it worse. Even hearing this made me feel not alone, so thank you. I send my best hope for you, hugs! Jill

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    • Posted

      Thank you Jill. I am pretty much alone, my best friends have all passed on, making new friends, hurting and exhausted like we are . . .it's near impossible.

      I have gone to this one group twice a month, but sometimes I can't go, I gettting too tired to go anymore; I had a friend pick me up and take me there, but I was so tired I could hardly sit up. I wanted to ask her to take me home, but it was the middle of the group, i felt too bad to ask her. That was not a wise choice. I was down for three days, and a sloth for a week more.

      Every flare is getting longer and harder. I feel every time I am getting closer to deaths door.  I don't mind being gone, it is the getting there I am having trouble with . . . you know!

      i have my dog, i hold on for her, but i have 3 people who say they will love to take her when I am gone.  At least I don't have to worry about her not having a home. I know she will be very sad when I am gone. 

      Yes, I am on whole foods, palio. my system can't handle most foods, but the gut pain and restroom runs are over.

      I was diagnosed with all three about the same time, about a year and a half ago.  When were you diagnosed?  

       

      I have been on the CFS site and our symptoms sound so much alike. I keep wondering if maybe they made a mistake on my diagnosis or if those folks have PM but didn't get an accurate diagnosis.

      I have not wanted to take meds, every time I take them I get sicker so I am tuffin it out.  

      Thanks for responding. It not fun being sick and alone ?

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    • Posted

      Hi Dee,

      I understand about not wanting to take meds. 60 mg/day prednisone AND on your own would be harder than any bootcamp, but we must. With a plan and knowing how to taper, controlling blood sugar very carefully and a wicked sense of humor, plus a good dog, you and I can make it .Huggers. Jill

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    • Posted

      Hi Jill,  I can't do most meds, they react badly, often they have landed me in the hospital.  i am seeing my ND today to discuss Hospice and other end of life options. 

      thanks for wrting 

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    • Posted

      Dee,

      I cannot possibly understand this story of you, but I send my heartfelt beat wishes. I pray your pain is eased and you have time to cherish your lifes memories.

      God bless you

      Jill

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    • Posted

      It's all good; we are all of the nature to die, some of us will just be leaving this place called Earth a little faster then others.  

      I have had a long enough life. I am too tired to keep trying. It actually feels peaceful coming to this place, because I am more relaxed and stopped trying so hard.

      Thank you smile

      💜

       

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    • Posted

      thank you jill, 

      i guess i have had to be strong. i sure am not now! it is a hard place to be.  i wrote the doc yesterday, we are going to talk about setting up Hospice. 

      On the other side of the coin, all the prayers must be working because I feel better today than I have in a month, was even able to take a good walk.  

      huggers back at you!

      D

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  • Posted

    I heard celiac disease could be caused by your body's autoimmune response to gluten. have you tried altering your diet? try juicing fruits and (mostly) veggies! and drink lots of water. there's hope! don't give up smile

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    • Posted

      Asuna,

      Yes, thankyou. I am a master at being gluten free and I am well versed in Celiac disease; a person with CD has to stay away from all things gluten, including cross contamination. I have been strictly gluten free for close to 2 years.

      The disease made me so sick (as it does for many with late stage CD) that a year and a half later, I am still unable to eat much of anything raw.  Fruit reacts like gluten, but without the villi damage, but the cramping painful restroom runs are bad, making it impossible to obsorb any nutrients. It leaves me weaker and unable to function. 

      It is believed that 1 in 120 folks has it but most have not been tested because of pure ignornace. 

      Because the diagnosis was so late in coming, because doctors and most folks are unaware of it true nature of CD, i am very ill and not going to recover.  Hope for the next life is on my dinner  plate now. Hospice is coming soon to interview me. 

      ANYONE with autoimmune issues, mental health issues, unexpainable symptoms should be checked for CD. It is at epedemic proportions.  If that many folks had the flu, you bet they be right on it, but there is no pill or jab/shot for CD. When there is, I will bet my bottom dollar that everyone will be getting tested . . . money money money money!  

      My last wish for all is to be well, read about CD, and get tested!

      Thank you

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    • Posted

      Dee,

      Goodluck tomorrow. I was cheered to picture you out for a walk. This world has its bright spots, and you are⭐️.

      God bless, sweet dreams.

      Woofs to your dog.

      Huggers! Jill

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    • Posted

      I have decided to call all the churches in my neighborhood to see if anyone would like to come in and visit me from time to time. I wonder if being so isolated is causing me more problems.

      It is good to have a stronger day so I can make these kinds of arrangements.  I know the Mormon girls are always offering to help and I contacted others as well. See what happens!  I feel decent today.  Hope it keeps getting better . . . until the next flare (dread)

      Hope you sleep well. It is 4:30 in the afternoon in my neck of the woods smile

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    • Posted

      Dee, Two hours later here. I think thats a great idea. One of my best friends was Mormon, sweet and kind. She would be a lucky gal to visit you and your dog.

      Well, enjoy the evening with your dog. My goldens are so wonderful.

      Woofs🐾🐕 Jill

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