hello this is my first time on here I have been recently diagnos with fibromyalgia I had noticed I felt like I was steadily becoming weaker and weaker and can't stand for any length of time I was in a motorcycle accident and broke a few bones and after that I began to really feel the pain all over it can vary from stabbing pain or just feels like I can't walk when I wake up in the morning my arms and legs feel weighted down and it is random pain throughout my entire body, the doctor has me on Gabapentine, Cymbata, and Hydrocodone and that doesn't seem to help at all. I take care of my girlfriend who is dying from ALS she is in a wheelchair and on a ventilator with no help from her family I take care of her 24/7 with my pain increasing I don't know how much longer I can continue as it is hard to transfer her from bed to wheelchair and back again also just repositioning her, she only has less than a yr so I really don't know what to do now. any thoughts
The following user gives a hug of support to ponytaildave:
How to safely move a patient from bed to chair: the hoyer lift. That is what its time for. This is a sling seat, pshe sits in the hammock chair, and it can all be wheel to the next place, crank up to get on a high spot, or goes low to a recliner.
Where do you live?? I am in Austin, TX. I speak advanced LouGehrigs. I am up in the night with the fibro. I could stay over and take turns with turning your girlfrend in the bed, so that she doesn't get bed sore. We'll get a support system to learn to help suction out any mucus in her throat. and I'll throw in a massage for you and a massage for her, We did this for my brother- in-law, GARY. We had a good time when we were together. Everything was a joke.
A church group really pitched in. They took over mowing, car repair, painting, bringing dinner sometimes, and taking Gary out sometimes. A former nurse taught us a lot about proper lift tichnique, and she gave him all his haircuts. Some illegals were paid to get his exercises/stretches done everyday, and they bathed gary, also. He died in his home with many more friends that when we started. We were so happy he was home with the kids. Dying at home is a peaceful environment.
So where are you??? How about some help?
Last edited by moderator2; 06-22-2012 at 04:33 AM.
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Hi dave, Being a caretaker is difficult enough. Caring for someone in advanced stages of ALS is all that much more heartbreaking. You cannot do this alone, either support groups or even hospice help would give you the help and rest you need. I agree on seeking a support group. My grandmother died from ALS, it's a cruel disease, .
What is the reason her family is not involved ?
Try to remember you also need to take care of yourself too.
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welcome to the boards. you have a huge plate of love and you have done great. it's time to call in help as the others have said. my best girlfriend works with hospice and i have to say they are amazing people. they come because they love, they help because they love.
as for helping you feel up to your life, well, there are so many things you can try. i never found drugs helpful with fibro pain. breathing exercises and meditation along with walking little walks every day.
i doubt you want to be knocked out at night even tho it would help a good deal. i have taken ambien for years. just recently changed but i loved what it did for me.
sending you loving energy from the redwood forests of my home.
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Hi Rhaquel , first of all thk u, we live in Idaho I am using a power hoyer and even at that it s still hard to function and make final adjustments for her in bed, sometimes it hard for me to do a simple task just to open a celofane bag or even to hold my coffee cup lol don't know what I'll do if I can't have my coffee. her mother died from cancer 1 1/2 yrs ago and her dad lives in California, her kids live here in Idaho but sadly they don't seem to care at all and take advantage of her all the time. its very hard for meat this point I don't have any Insurance. I am about to give up and s eek disablity for myself and let someone else deal with this but know this I still love her. don't know what to do? wow a masage I could use that. can't take anything for sleep because I have to stay alert to help her. thanks
Hi dave, first of all thank you for not blowing your stack at me. I just got up. I haven,t slept well for so long, I have been trying to get over my insomnia, and doc has had me go three months without sleeping meds.
Last night I gave in and took an ambian. It made me quite loopy, but not sleepy, apparently. I was horrified HORRIFIED to see today how I worded my response last night. Surely not my most tactful posting. I apologise a hundred times. A thousand times.
I do wish I was closer to Idaho, because I know that none of us can imagine what a strain this is for you. We had enough family members to call upon, and as I say, the church was wonderful. (They were the most wonderful type A helpers --- someone arranged schedules for every type of help)
I hope you will reach out to someone local for help. I remember when Gary first got sick feeling sad that I couldn't physically lift him any more, as I had done a couple of times in the beginning. I was just beginning into the deconditioned part of my fibro. I cannot imagine how much you are pushing your body right now. It is an entirely different situation for you, without a family network to help.
My deepest, heartfelt apologies, and I am so sorry I can't come over and give you a night of good rest tonight. Would you like someone to look around on the internet and see if there are any resources in your town to help? I so want to find a way to help, and PLEASE feel certain we all know this is a tremendous strain for ou, and wish you only the best.
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