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Kemene

Member
Joined
Jul 29, 2014
Messages
10
Reason
DX FIBRO
Diagnosis
06/1997
Country
US
State
SD
Hello everyone. !st I want to say I really appreciate having this place to come to where people actually understand what it is like to have fibro. NO ONE in my family has a clue or has ever shown any interest in trying to understand.
I have had this for many many years. The last year of my life has been so overwhelming. My mother passed away last summer leaving my brother and I to take care of our father who is elderly, incapable of taking care of himself, and a heavy beer drinker. He absolutely refuses to move out of his house even tho he can't do anything.
My brother also drinks a lot of beer and does very little to help. I pay all dads bills, do his laundry, and was getting his groceries. Finally, my brother's girlfriend started helping a lot with house cleaning and preparing food. She does it for pay.
My dad fell about a week ago and broke his shoulder. I work full time, and I have spent almost every minute of the last week working or doing what needs to be done for dad or being at the hospital where he was for seven days. He was moved to a nursing home today temporarily for rehab. He broke his right shoulder and is right handed. He won't even try to eat with his good hand - - we have to spoon feed him like a baby.
I have a lot of pain and muscle tightness, and I am just exhausted. Work at my job has been nuts. I am going to take some time off next week.
Also, a month ago, I had to have one of my cats, my little soul mate for 18 years, put to sleep. Sometimes it seems like life is just so relentless. I also had to find a new job after Mom died cause the people where I worked before forced me into a new position where the stress level was unbearable for me.
I just needed to vent. I am almost 60 years old. When does life get easier?
 
Bless your heart, I am so sorry to hear all that. You need to put your foot down and demand some help! does you dad have insurance that will allow someone to come in each day to help him? He needs to feed himself too. This is going to sound mean but when he gets hungry he will use that hand. It sounds like everyone is taking advantage of you because they know you will do it. I hope you get some relief, gentle hugs.
 
Dear Kemene,
My heart goes out to you, and I very much empathize with you. I too am a newbie here, and have just gone through a difficult passage of almost six years of challenges: twp years of taking caring for my mother who had dementia 24/7 (sundowner's syndrome, so I got very little sleep for two years, and you all know what that means). I've lost dear friends who passed away, and a darling dog and a cat. I'm an only child, am divorced with no children, so my friends have always been my "family." Unfortunately, few of them can even begin to understand what we go through with fibromyalgia. I had to retire early from my beloved teaching job, which in turn had an unfortunate impact on my finances -- a problem I also believe many of us share. I lost my beloved farm. And now I'm losing friends, many of whom think I "complain" too much. Well, I probably do. Because I live alone, I've gotten into a terrible habit of moaning and groaning, I think. When two dear long-time (decades-long) helped me move to a different part of the country two weeks ago, I must have moaned and groaned and complained without really being aware of it. Unfortunately, they didn't have the courage or the communication skills to interrupt my annoying behavior; instead they let their irritation build up to a seething rage, and when we arrived at our destination both ambushed me by shouting at me, calling me profane and derogatory names, etc. Now, we were all exhausted from the move (and moving is crazy-making in itself), but I'm afraid I've lost yet two more friends to this disease. Now they refuse to talk to me.
As I suffer from depression (as many of us do -- who wouldn't be depressed enduring what we go through?), as well as fibromyalgia and chronic fatigue, I am just crushed when friends blast me for not pulling my weight, or for complaining, or for canceling plans at the last minute. While I would not wish this disease on anyone, I do wish that everyone could suffer through the myriad symptoms we endure for just fifteen minutes. I do think that would foster more empathy -- and perhaps save more friendships.
Thank you all for listening, and Kemene, hang in there, as I'm trying to.
 
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Oh my, I do feel for you. I was recently diagnosed so it is all still too new to me. I have gone down hill in the last year, now my diagnosis include fibromyalgia and polymyalgia along with a new one.... pernicious anema on top of hypothyroidism, RLS, chronic headaches, GERD, diastolic hypertension...you get the picture. I have not found too many understanding people either. My sister (whom I am very close too) tells me that everyone has pains and to just pop a few ibuprofin. She doesn't understand that that wont work. I work in a health clinic and that is getting tougher to do. Even one of the nurses brushed it off and called it an "easy diagnosis when they don't want to find the real issue". Thankfully my husband is understanding at the moment, even willing to move back up north because the humidity is killing me. I do alot of sleeping when I can and if it weren't for the nortriptyiline, RLS meds, and my Lyrica I probably wouldn't sleep at night too well. Oh I also have to have O2 at night. We can lean on each other, I know it is not the same, but atleast here on this forum we all understand. Gentle hugs.
 
Wow it sounds like you're in a bad part of life. I feel you so much, I've been through things like that, could be worse, could be better. I always felt like I wasn't going to make it through life with all those problems, just keep on pushing and you'll be fine. I've never been diagnosed, but my brother has, and I'm on here looking for help. :D
 
I want to thank you all for sharing, and for reminding me that I am not the only one with problems! and for reminding me that this problem is real, it is difficult, and we are not just "whiners and complainers." We have a real medical problem that can make dealing with normal, everyday life challenging, let alone the crises that come up for everyone from time to time.

I understand the problems with friends! I have actually limited myself lately to just two close friends because frankly, I got tired of trying to make friends understand why I didn't want to do things with them every weekend or during the week after work. I guess people really are just not able to get it

My father has started feeding himself now, thank goodness. I didn't stop after work tonite cause im exhausted and still working on financial matters. My brother's girlfriend is helping more now, and I really appreciate that. I don't know what is going to happen with Dad from this point. They are saying they will keep him in the nursing home for therapy for a month, but knowing my Dad, he won't stay there that long. I am just trying to take it one day at a time. I have to get back to stretching and taking care of myself. I took thursday afternoon and friday off, and am getting a massage on Fri! Can't wait!

Best wishes to you all!
 
It is horrible when you feel as though you are on your own, and it seems to be that's what you're going through yourself right now. One of the things that you really need to remember is that, as much as you might think it, you are NOT on your own. There are a lot of other people who are going through the same thing as you, and many of them are here on this forum. You should of course find that you get plenty of help and advice from your medical team, but the people here will offer you a valuable insight into what you might be able to expect, too. Sit your family down and have a chat to them about your condition, and maybe print them off some leaflets which might help them to understand a little bit better.
 
Oh man, I feel so sorry, at your age you should be having a calmer and more relaxing life, my mom is your age and she is retired already, but she gets to help me out from time to time, but that's it. I feel so sorry, I hope your dad gets better and your life changes for good, you deserve to relax and rest, you are 60 years old, I can't believe you still have to work full time... where is this world coming to!
 
I don't no how it works where u live ,but my mum Had the same with my grandma .in the end she had to go in a home and they sold her house to pay for it,but it had to go to court to prove grandma wasn't able to care for herself.do u not have ground to find out about it, even if his house is rented surly he can go into a home where he will get care all day ,giving u time to look after yourself. My mum had a new hip and dad has a very bad back they did want her in a home but the they were so lovely and her last year with them was wonderful mum and dad could relax and I wasn't scared that mum, Who isn't well herself was going to end up in hospital.
Your one women u can't do it all ,your no good to your dad if u end up out of work or I. Bed yourself xxxxbe kind to yourself for awhile .xxxxx
 
I had to learn the hard way.....You have to make yourself priority #1. If #1, you, get exhausted or have a major flare-up, you won't be any good to anyone. Gentle hugs to you......
 
Kemene: You just described my life to a tee! I am also doing dads bills after mom died, brother drinks-doesn't help much, etc. I had my dad living with me till I couldn't take it any more. He expected me to be his slave while complaining to everyone about me. So I got power of attorney, sold the house, put him in assisted living, and just yesterday I took away his bank card, literally had to take away his car keys after his many wrecks and refusing to give them up! He can't even remember what happened 5 min ago, let alone drive a car! He was also constantly falling and breaking something. You just have to do it! By any means possible! I still pay his bills, I give him a hundred dollars a week for spending money, pay his bills and make sure he has everything he needs. I am slowly teaching him the elderly buses he can ride here and there..I CANNOT be running to his beck and call every time he has a whim (that's what he was used to from my mom-but Im not my mom). I will go there every two weeks to make sure he has what he needs and that's all I can handle. I will turn off my phone after certain hours, etc. Even if you have to be a little covert~ find a way to make your life easier. It HAS to be done! Good luck!
 
Hi there ! You have a lot of stress and that exacerbates Fibro. My advice ONE DAY AT A TIME. and learn to say no. Your brother needs to step up. I don't know who is buying the beer, not you I hope, and if you are stop. Let bubby buy it. I know its not easy but its a small step.
 
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