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dazdnconfuzled

New member
Joined
May 29, 2014
Messages
4
Reason
DX FIBRO
Diagnosis
05/2014
Country
US
State
NY
I am probably going to sound like I am rambling, so I apologize in advance, I just need to get this off my chest.

Let me start with background... I have been suffering silently with this for many, many years. A couple of years ago I couldn't take it anymore when after work every day I would cry in pain the whole way home (28 miles), and had the doctor take me out of work. Of course I didn't have an easy job, but I liked it. Worked for Wegmans unloading the meat delivery and putting it away(average of 40-50 pounds with some boxes 75+). Went in to work at 5-6 am and was out by noon, and had plenty of time to do farm work, clean stalls, etc. I am on a Fentanyl patch and Oxycodone for the pain, and it didn't even touch it. I also take Bupoprian, Trazadone (for sleep), and now I am on Prozac. Dr. wants me to go on Cymbalta or Lyrica but both are soooo expensive, we have a high deductible health plan. And I have sleep Apnea, wear a C-Pap machine every night, and still can't sleep with the Trazadone because of the pain. I have Spinal Stenosis, so I have had back pain for a while. I started out complaining about the back pain 5+ years ago, but had no idea about how to bring up that I hurt everywhere. So we were just trying to treat back pain, depression, insomnia, GERD...

So here are some of the incidents... We have 8 horses at home, with 3 horses that are used for lessons, that are at the barn where my daughter teaches. I was helping her clean stalls, when I got overheated, and had what I figured was a slight overdose from the fentanyl patch, got nauseous, light headed, heavy breathing, threw up. So I told her how I felt, and she basically just said I shouldn't take the pain killers, no sympathy that I didn't feel good at all. When I got my fibro diagnosis, I had an idiot for a rheumatologist. I had gone in there with the hope that I would be on my way to feeling better. She gave me the diagnosis, and then told me no pill would fix me and that all my problems would be solved if I lost 50 pounds. So I was very depressed that day (more than usual). My husband felt that because I was so depressed he needed to hide the bullets. He didn't tell me this until about a week later. I thought it was kinda sweet that he worried about me, but funny at the same time cuz suicide is not something that I would ever do. I attempted to tell her what he did, and she blew up at me and she said "sure, just go kill yourself, how stupid". Not anything like, what would have mad him think that or why were you so depressed. Then a few days ago, I found out what she really thinks. She has no clue why I don't work. She was angry and didn't know why I couldn't work doing a desk job if my back hurt (like I would willingly put my family in this financial situation). I should be able to work part time on the computer at home or something (has anyone found a legitimate at home job with flexible hours to cater to my flare ups, brain fog, pain, can't sit, can't stand, can't walk too far) And pretty much her view of me is that I am a lazy pill popping junkie.

I think she needs to wake up and realize that mom can't do everything for her anymore the way I used to. Oh did I mention she is 25.

Sorry, just had to vent on this one. I don't have anywhere else to turn. No one understands. How do you explain to someone why you physically can't get in that tractor and cut hay today(actually this was yesterday).

Thanks for listening,
Cathi:confused:
 
Cathi,
I am so sorry your having this problem with your daughter. It is hard enough for us to understand fibro, without trying to explain it to others. But some family members would drather think us lazy then do a bit of research on the subject and try and understand what we are going through. And I know that feeling of wanting to help with the chores and then getting sick trying to do so. I got hit with a bad case of dizziness just trying to weed a flower bed. One bad bout sent me to the ER.

Bottom line we need our medications and we are not superwoman. Some chores have to be let go so the most important can get done. I too was told it was my fault for everything that went wrong in the family life. Please try and keep your chin up and be brave and do the best you can. I encourage you to read Day 7, of my blog and maybe get a few ideas on ways to make money online.

Sometimes hobbies can give us a bit of money or selling things on consignment, selling books or dvd's, or video games we don't need. Try to think outside the box and find easy things you can do to make money.

Good luck and welcome to the forum. :)
 
Hi Cathi... glad to see you here! First of all, I'd urge you to look back over past threads in the forum. There are some great suggestions on getting through things like you're facing and dealing with friends or family members who just don't get it.

I'm so sorry that your daughter doesn't understand what's going on. I've often heard that it's not until someone else faces a crisis of the same magnitude that they will truly understand.

Does your daughter just come by for those lessons, or actually live there with you? I hope she'll soon find the respect that is due a parent... and that she'll remember who the parent *is* for that matter. :-(

Please keep talking/venting... that's one of the reasons we're here.
 
I feel for you. I know it's hard. Back when I found out about one of my medical issues (endometriosis) I found this survivors letter. Though the letter states its for patients with endometriosis, it also works for anyone with an invisible disease that causes chronic pain. When I found it, I shared it on FB and family started to understand a bit more.
 
Gosh Cathi, You just described my house, but I only have one horse (would love more!). My 25 year old son blew up at me a few months back. He had been living at home and started changing is attitude. Used to be he helped quite a bit, but slowly it became his flop house. We wanted to entice him to move so said if he stayed he needed to pay some minimal rent. He went on vacation for 4-5 days and didn't even mention it. I heard it through the grapevine. He's a good kid and has finally landed a permanent job for a city. Given his attitude and the fact that he now had secure employment I mentioned that I wanted to talk with him about his plans. He bought a motor cycle in September, which I had told him if he did he needed to leave. Unfortunately, I had a heart attack in October, so didn't have the energy to deal with it. Anyway, long story short, I finally said we needed to talk.....He blew. He told me I'm crazy, lazy and a whole bunch of other stuff. It broke my heart. I still hurt.....I went to counseling after that. My counselor believes he was scared of moving out. She also believes he doesn't want to acknowledge that I have a disability and that if I just exercised and ate better, I'd get into shape and could play ball or sports, or whatever again. Hang in there. It will get better. Don't let the added stress your daughter is attempting to give you stick. Just feel bad for her for not understanding. I would recommend a counselor too.....I truly believe it was the best thing I could have done.....
 
I was on cymbalta I hope I am spelling that right, anyway I was on it and my family started to notice I was acting real strange seeing things, and even seeing people who had died family members that is, and this was going on for almost 6 months when my son said what medication are you on? so I said I have to see what is going on with me. I removed my medications one at a time starting with cymbalta, and for a week I had no more crazy things going on. I was in a water theraphy group and telling my story when they all stated that they too all had they same reaction to it even one said they almost committed suicide and her Dr. took her off of it and she was fine after that. I am not saying it don't work as it helps but for those who may have anything I stated it is not even worth going on.
 
I understand your frustration.

My house is rarely clean, unless the cleaning lady (who comes once every two weeks) has been here. My daughter seems to have a very hard time understanding that I hurt so much and that I'm limited in what I can get away with doing, unless I really want to pay for it later. She seems to think I should be able to hop right up and get things done, but that's not an option for mr.

I've been fortunate in that I've finally got medical coverage, so I can see a doctor, and I think that having medical backing for what I'm going through has helped a bit with her attitude, but it's still there.

I'm hoping that I can make her understand all of this, and I'm seeing signs of FMS in her as well now, although she strongly denies it. But how else would you explain the brain fog, all over pain, etc.?

She's only 31. :(
 
Cathi, it's hard for the others who are not suffering from this to understand. Your daughter might never ever understand what you are going thru, no matter how many times you try to explain it to her. That cold change if she started suffering from that as well, but only then she would understand. No one but the others suffering from this can understand, so she might never understand it. The sooner you realize that the better for you. I tell you because I went thru the same.

And this is one of the reasons I keep my health issues to myself and no longer talk about it with my ''loved'' ones.
 
One of my sisters seemed to think my pain was just my way of getting out of things..over the years..zero compassion..trashed me to other siblings..like i was making it up..at some point i just stopped caring what she thinks..

I often think your children just try to deny your health issues..my husbands a sweetie but was not good at helping the kids understand..

Its a lonely disease..we do not look as sick as we feel.
 
One of my sisters seemed to think my pain was just my way of getting out of things..over the years..zero compassion..trashed me to other siblings..like i was making it up..at some point i just stopped caring what she thinks..

Sad but true... sometimes a point is reached where there's nothing to do but knowing it's a lonely path, but others are just simply not going to get it.

When it comes to a place where trying to make others understand is nearly as stressful as having the pain, it's probably time to move on. (I mean emotionally, not necessarily physically unless that would be all that would help.)
 
Cathi..so sorry for your situation with your daughter..our poorhurting hearts...you are bearing up under extremely stressful circumstances...in pain, no relief from the drugs, feeling sick from the drugs, tired, and to put the cherry on the fibro sundae, you get people you love lashing out at you from a place of not being able to understand what you are going through..hugs..I am thinking of counseling to help me deal emotionally with this rejection..we are ll here for each other!
 
I think you should really have a heart-to-heart talk with your daughter and tell her exactly how you feel about her attitude towards you. You also have to try to understand where she's coming from. Sometimes, daughters act like that because they are in denial that you are not well and they have their own fears about the possibility of losing you or having life with you that's not normal anymore because of your condition.

In general, it would be worthwhile for both of you to just try to understand each other and open up how you feel.
 
One of my sisters seemed to think my pain was just my way of getting out of things..over the years..zero compassion..trashed me to other siblings..like i was making it up..at some point i just stopped caring what she thinks..

I often think your children just try to deny your health issues..my husbands a sweetie but was not good at helping the kids understand..

Its a lonely disease..we do not look as sick as we feel.

Woah, I hope things are better for you! In the end what really words is understanding that what the others think about us in the end doesn't really matter, specially if the opinions of those people are more harmful than good. Now I tend to ignore negative comments and people!
 
Lots of family members dont intend to be cruel but are. They lack knowledge about the disease and/or have never experienced it themselves. But I think for your own daughter to act like this is not right. Does she see you constantly in pain and throwing up and struggling ? If i saw my mother like that I would jump through hoops for her. My grandpa has chronic pain and she lashes out at family members . She verbally abuses us . But most of us stay quiet and just waive it off knowing she is not in a proper state of mind and frustrated.
 
I am sorry to hear what is going on with you. I do know however it is good to vent and let it out. I hope things get better for you and your daughter. I do agree with a reply above that you should really talk to her so she can really get a sense of how you feel. Hopefully she can see the light and be more helpful to you. It may come with age so it may take some time. When I was in my twenties, I gave my mother a hard time and didn't always care what she was going through. I am now in my thirties and will do anything I can to help my mother. I also have kids now so I have a whole knew perspective on respecting and honoring my mother. You are going through a lot and you need her so please break it down to her. If she understood the severity of it she may change her attitude. Good luck to you.
 
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