Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
This past Sunday I ended up calling 911 as having chest pains and vomiting that didn't stop. I was taken to ER and hookup to ECG and had blood work-up. My cell phone was away from me in my purse and I couldn't move. Really wasn't thinking either. I was there around 7:30am and not had anything to drink or eat. I finally told by ER cardiac doctor that all tests look good but they wanted to keep me overnight and run stress test to rule out heart problems. He thought it was esophageal spasms. I agreed and finally got phone (barely a signal) and ask for food/drink. That was around 3pm. I agreed to being admitted as to have tests done.
Well, I was told a Echo first then if nothing found, the Stress Test. All tests were canceled without explanation. I tried to find out why but no one would answer. When admitted into RTU (Rapid Treatment Unit) I was never given the guide for resources or help. I asked to a bedside bathroom as I been weak/fatigue need it. I never got it. My fault as I should have complained like crazy. I was forced to walk and they started focusing in on my gait/balance problems and why? On top taking so long to get drink and food, all my meds were discontinued. This lead to more imbalance, neurological pain, more fatigue... I was very hard to stick and getting fussed at by some nurses and even teased where they were going to stick my inside wrist.
I didn't see this as funny and would have jerked my hand. Really I should told him to get labs down there. Physical Therapy was called in to evaluate me and told me I couldn't go home not living by myself. I had to agree to Home Care coming in my house to see if it was safe to life here and someone visiting daily for a week. I agreed knowing I just lied.
No one comes daily (unless you count mobile meals) and I canceled Home Care. I had family member very upset that I canceled them. Well, I can't afford it especially with this bill coming up. I felt trapped and scared. Family member feels it is unsafe for me to live here but been repeating that since 2006 they felt that way.
It's my life and I determine my quality of life. I have learn to be happy and to give and receive love and enjoy my life. According to them my quality of life stinks. I am not ready to be moved out of my home. Someone wants to help, then visit me or at least call... don't stick me in a hole in the wall in the system. I have checked out what I qualify for and don't. I am aware of my situation. No one has the right to tell me how to live my life. I pay my bills on time, still get groceries, order most stuff online, can bank and still drive within 2mile radius. Doing best to make new friends.
Family member wants me put away now or home care in home which I can't pay. They say they worry all the time but won't even call or visit.
I guess this is a vent but also have you thought about what happens when it becomes unsafe for you to be in your home, if living alone? What are you plans? If there is still help at 65, then I'll use the system. I plan to have my home paid off.
Well, I was told a Echo first then if nothing found, the Stress Test. All tests were canceled without explanation. I tried to find out why but no one would answer. When admitted into RTU (Rapid Treatment Unit) I was never given the guide for resources or help. I asked to a bedside bathroom as I been weak/fatigue need it. I never got it. My fault as I should have complained like crazy. I was forced to walk and they started focusing in on my gait/balance problems and why? On top taking so long to get drink and food, all my meds were discontinued. This lead to more imbalance, neurological pain, more fatigue... I was very hard to stick and getting fussed at by some nurses and even teased where they were going to stick my inside wrist.
I didn't see this as funny and would have jerked my hand. Really I should told him to get labs down there. Physical Therapy was called in to evaluate me and told me I couldn't go home not living by myself. I had to agree to Home Care coming in my house to see if it was safe to life here and someone visiting daily for a week. I agreed knowing I just lied.
No one comes daily (unless you count mobile meals) and I canceled Home Care. I had family member very upset that I canceled them. Well, I can't afford it especially with this bill coming up. I felt trapped and scared. Family member feels it is unsafe for me to live here but been repeating that since 2006 they felt that way.
It's my life and I determine my quality of life. I have learn to be happy and to give and receive love and enjoy my life. According to them my quality of life stinks. I am not ready to be moved out of my home. Someone wants to help, then visit me or at least call... don't stick me in a hole in the wall in the system. I have checked out what I qualify for and don't. I am aware of my situation. No one has the right to tell me how to live my life. I pay my bills on time, still get groceries, order most stuff online, can bank and still drive within 2mile radius. Doing best to make new friends.
Family member wants me put away now or home care in home which I can't pay. They say they worry all the time but won't even call or visit.
I guess this is a vent but also have you thought about what happens when it becomes unsafe for you to be in your home, if living alone? What are you plans? If there is still help at 65, then I'll use the system. I plan to have my home paid off.
As for your family, I have a suggestion. Can you tell them that once they've shown support by calling or visiting once a week for a month, you will consider their opinions?
Very hard being alone in this. I am starting to use community agencies to help me; takes time but have found some good people.
I wonder if there is someone you trust to follow your wishes, meaning, to keep you home as long as possible in the manner you wish? someone who "gets it"? I would make them your medical POA. That way you won't have some well meaning but knee jerk family member going to court and being designated. You'll have your own choice of who you trust....
As for if I were along - if/when my husband passes on first (he's older than I am), I'll talk to my daughters, make one of them POA, and get myself situated in somewhere really easy to live in and close to them. Perhaps even a Gramma Pod in their back yard (very small mobile home). When that becomes too much or if I end up being any kind of burden I already plan to go into assisted living. I'm the type that would not mind living in a one bedroom and going to a dining room to have meals twice a day. Once that ends up being too much, it will depend on what's available.
I am thinking when I'm at the nursing home stage, it will be about 25 yrs from now. If I'm still around and (hopefully) laws have changed and nursing homes are single person rooms, then that's where I'll end up, I can see myself handling a small room if I need to. My daughter would most likely have me but I won't be a burden. If the laws haven't changed and it's a shared room, I will do what I consider to be my Goddess given right and end my life. I won't spend my last days in a tiny room with a stranger, I cannot imagine anything worse. I'll go on quietly first. Controversial, perhaps, but my choice and I'd stand by it.
When it is time to have home care, I'll ask for it and when it is time to do more like assisted living, I won't fight. I've talked this over with my mom before she passed almost a year ago. It's just not time yet. @Nina: that sounds like a great idea Gramma Pod and the other is your goddess choice - no judgment here. I just have no where to move to right now.