Noob here. Finally decided to vent...

[Carlos88]

New but not a stranger forums across the interwebs. I've had some serious problems with my body falling apart. Apart from having fibro, I have psoriatic arthritis which is slowly destroying my joints.

Surgeries so far since 2014:

Fusion L2-L4, Fusion/Revision L1-L5, Spinal stimulator, left hip replaced, C2-C3, C5 (cervical fusion) with the very real possibility of fusing every other cervical joint.

Fibro: my father had it before it was a thing and of course the subsequent diagnosis. The disease started when I was about thirty five. Both of my ankles and one knee hurt like the devil. Swelling, pain, etc. It would manifest itself for two weeks (or so) then disappear for months and then gone entirely. I'm now in my mid sixties and between the pain from the surgeries and the fibro that travels around my body, I have no relief. None.

I can't tell you the number of times I've gone to rehab. I have to take pain meds and thousands of milligrams of ibuprofen, lyrica, gabapentin, humira. I have headaches that last a week at a time, I can't get a good night's sleep. I can't work because standing for any amount of time worsens my symptons. Sitting comfortably lasts only so long.

More than anything else and the most painful psychologically, is watching my family ignore my problems when we're together and when we're apart, no communications whatsoever. No calls, no texts, etc. My wife routinely talks and texts with both our boys. Plans for camping trips and vacations are sprung on me with the inevitable "I didn't tell you? ". It's so annoying. The last spendy vacation was to Key West with the boys, their wives and two grandkids. That one happened three or four days after my cervical fusion. I couldn't go due to doctor follow ups. Nice.

I'm going to have to jump off. Have my daily honey-do's to finish.

Thanks for "listening".

Carlos

 

[sunkacola]

Hi Carlos, and welcome to the forum.
I am sorry that your family is so unhelpful to you, and in fact want to ignore you and the problems that you have. Sometimes it is the very people we should be able to count on the most who cause us the most pain.

Many of us with fibromyalgia find that we have to cut toxic relationships out of our lives in order to live. This is pretty difficult when it is your own family, but I think that there sometimes needs to be a reckoning of sorts with this kind of thing. A person can work to find a way not to allow the cruelties of the other people to affect them, or they can end the relationships with the people who are hurting them. Both those things are very hard to do, but unfortunately unless one does one or the other (or finds another way to make it less hurtful), these people will continue to make your life hard or miserable.

Have you had a serious sit-down with your family to tell them what is going on with you and ask for their support? To tell them what they are doing that is hurtful to you and ask them to stop, and tell them exactly how they could be supportive to you instead? If not, I suggest you consider doing this, even if you don't think it will work. It's worth a try. And if they won't listen, or keep doing the hurtful things anyway, you will know that you need to find another way to make it stop harming you.

Many people on this forum have to deal with unhelpful family members, and may come here and write to you about their experience. I hope that one way or another this forum will be a source of support for you.

 

[hope23]

Hi Carlos, i am so sorry that your family is unsupportive, it is such a hard topic to tackle as depending on your families innate attitude towards pain, illness and setbacks, getting them to understand can be a challenge. The thing i have found over the years is that people understanding what we live with everyday without having lived it is a challenge.
I am a New Zealander and have grown up in a society whose catch phrase is "harden up and get over it" and to a certain extent i still subscribe to this, but when i got sick i came to understand that there are a huge number of circumstances where that catch phrase doesnt and cant apply. For the first two years i was sick i hid it from everyone and tried to just carry on, it took me getting sick to truly comprehend how damaging that particular catch phrase can be in different circumstances.
As Sunkacola referred to, being open and honest and having a serious conversation with your family both on what you are living through and how their actions and behaviour are impacting you. I would also recommend utilising one of the many metaphors out there for chronic illness to help give a more tangible frame of reference for your family the two that spring to mind are spoon theory and the broken battery.
I also agree with Sunkacola that sometimes you need to cut certain toxic relationships out of your life, this is not easy or simple particularly when it is family. A bit about my own experiences with this, my fiance walked out because he couldn't cope with the fact i was sick and it was a part of my life whether i liked it or not, i do not have much in the way of a support system but i have still distanced myself from those in my life who didn't want to take the time to understand what my life is like. My biggest lesson i learnt through everything is that when we try to hide how we are feeling, hide the daily challenges it makes it all the harder for those around us to understand what we are going through on a daily basis. Having a brutally open conversation with your family would be of benefit, if they still continue to behave in that way then its worth considering is maintaining that relationship more harmful to you than good or is that relationship more important and valuable to you despite the harm it is doing. This weighing up is very personal and there is no right or wrong answer in the sense that its about how you feel about. Keeping people in your life that are hurting you purely from a Fibro point of view is going to have certain ramifications.

You are not alone and we are all here to support you the best we can, look after yourself.

 

[sunkacola]

@hope23 ...You are right, in my opinion, that when we try to hide how bad we are feeling it only makes everything harder. Of course it makes things harder for us, because we are pushing ourselves when we would do better to pace ourselves....but it also makes it harder for others to believe and understand what we are going through. It's ironic, isn't it, because we are taught to carry on and not fuss and so on, and basically that's not a bad thing in itself, but there are times when it is exactly what will make things worse if we do. This is a very good point that you have brought up. Thank you for that.

That kind of early programming from society and our families, which so many of us received no matter where we grew up, is just nearly impossible to break within ourselves because it is ingrained from such an early age. Even if we learn to do things differently, many of us will still second-guess ourselves internally, or feel bad about it. I think one of the good things about having a forum like this is so that we can write about this and encourage each other, remind each other that we are not crazy or making this up, and offer support.

I m so sorry, Hope, that your fiancé left you. They must not have truly loved you for you, or they wouldn't have left, but that is really no consolation when you've lost the whole future that you thought you would have. I know all too well how devastating that can be.

 

[hope23]

It becomes such an integral part of who we are because its bee drummed into us our whole lives and while there are times where i truly appreciate that i have that strength to just get on with it, when it comes to what we all live threw for me that phrase can do so much damage and harm. I grew up with a mum that it didnt matter how sick i was she always treated me like i was making it out that i was sicker than i was, whenever she took me to the doctor the first comment that would be made and always in front of the doctor was "now dont make it out to be worse than it is" at which point no doctor listened you were just treated like a hypochondriac. Had my mother not done this my entire life I wouldn't have hidden how crook i was for so long, I wouldn't have spent so much of my time questioning myself and how i was feeling and the level of pain i was in. And i would have gotten a diagnosis of my Ehlers Danlos syndrome 10-15 years earlier. It wasnt until a year or so ago that i had a brutally honest conversation with my mother on the impact that her actions and behaviour had.

We are not crazy, we arent making it up, we arent making it out that we are sicker than we are. This forum is a safe space to talk about all of the things we deal with.

It wasnt easy, but at the end of the day he didn't love me for me, whether we like it or not we have this condition and all that goes with that, im in a better place now in a relationship with someone who went in with there eyes open, knowing that this is my life and if that isnt something you can handle then you need to know that from the start.

 

[Buckle]

I hesitate in replying to your post, for fear that what I say will be taken in the wrong way. Not just by you. Please understand that my reply is based on personal experience. Some experts ? say that most FMers (people with fibromyalgia) have had the disorder since childhood. What we once called "growing pains" was the first signs of FM. Some say that what we once called "rheumatism" was FM. What we once called "exhaustion" was FM or Chronic Fatigue. As a child, I had "growing pains." I also had what we now call IBS. As a child, they gave me prune juice first thing in the morning, and sent me off to school. No wonder I hated school. My parents called me a hypochondriac! By 10, I had an ulcer. By 17 they came up with the term "Spastic Colon". Then I grew up and got out of my childhood home.
Things were fine for a long time.
Like most FMers, I was misdiagnosed for over 6 years, before they gave me the dx of FMS and "severe" OA. That was in 1995. When I received the diagnosis, I had to study. I needed to learn more about what this was and how to get rid of it! Needless to say, I was horrified when I found out, there is no cure, just maintenance. So, I talked about it and talked about it and talked about it. Until I got sick of hearing myself talk about it. My husband? Well, he wanted to "fix" me. Of course there was no way; leaving him feeling totally helpless. Something that he was not accustomed to. My adult children had their own lives with their own problems. No one could do anything anyway. And even our closest loved ones, can only hear the same thing over and over, for so long, without detaching. Or seeming to detach. Yet to detach was actually the best way to deal with the FMS. I say that, because I needed to detach from the illness. FMS and so many others, can become all consuming, taking over every aspect of your life and how you define yourself. You know you have it. Yell it outloud if you need to. Then take back the parts of your life that you can take back. No one is going to understand FM unless they have FM. And I wouldn't wish that on my worst enemy.
There is a therapist that says, to NOT say, "I have anxiety." It makes the disorder part of you. Instead to say, "Doing----makes me anxious." Thus giving you some control.
I have a bag that I keep in my car for trips outside of the house. In that bag, I have place things that I may need to have, if this or that happens. Example: I keep a roll of toilet paper, baby wipes and also a Depend, for my IBS. I also have Imodium. I also keep proper snacks for reactive hypoglycemia. This is something that I read on a site for travelling with IBS.. I'm sure there are sites that would have suggestions for your needs.
When my father was elderly, he talked incessantly about his body functions, aches and pains. As though that was all he knew to talk about. We tried and tried to get him to talk about anything else. Needless to say, my mother and all of us got sick of it, avoiding his conversations.
If you don't talk about your pain all of the time, then when you do talk about it, maybe, just maybe, someone will then listen. They cannot "fix" you. You can't even "fix" you. You know how helpless you feel. They might be feeling helpless too. My father also had Parkinson's and I am scared to death that I will follow. I'm sure with your father's diagnosis and now you. Your boys could be scared too.
I hope this helps and not just read like I'm rambling....lol.
Find things to talk about with your loved ones. If you need to talk about your illness, then journal or get a small recorder and talk to it. Talk to yourself. Talk to your higher power. Cast a spell.
Love & Peace