How long did it take for you to accept living with fibro?

[links56]

I have a friend who has been experiencing beginning fibro symptoms for a couple years now, Hes mother has been battling it for 20 plus years. When he tells me how hes feeling and I see how he reacts to different situations I can clearly see myself in the early stages. Sad thing is he is still in denial about it and refuses to go get the diagnosis, he says he feels like hes being a baby and its just "all in his head"(my least favorite phrase btw!)and he doesn't want to be "labeled". Also his wife and him just had their first child and they have been struggling because of it. Ive told him my opinion and so has his mom and many others but like I said when I was in that stage I didn't listen to advice from people who had already been fighting it. I guess I told his wife that he will have to hit rock bottom so he can decide to take action on his own. I just really feel for him and what hes going through, i wish i had better advice and I hope their relationship can sustain and he doesn't harm himself while hes on the roller coaster to acceptance. It took me a few years to truly accept it. how about you?

 

[Tipnatee N]

I think you've got the perfect idea and situations on this one . It's common with lots of illnesses where shame in disability and stubbornness seems to always play the big parts in our human way of struggling. I'm too was too stubborn and too proud to get any help till it was too late or almost kill me. The inability to listen , proud in my ability to push through or even beliving that I'm capable of easily adapting to any situations can Turning in to unintentionally cruel to my self and my love one . In my head are the thoughts of my love one having to suffer going through the diagnostic progress , thinking less of me, or if I'm by my self I think why bother anyway cause fibromyalgia can't kill me or can be cure. Which can be misguided . I'm too love the terms it's all in my head cause in the way it's the brain that I'm blaming my unpredictable pains on so at my first stage of my acceptance I was still believe strongly that "mind over matter" can work very easily without any outside help. Now I'm joking about it by calling that that the periodic of Hercules fantasy syndrome . It's the disbelief in self weaknesses regardless of the situation. And no amount of intervention can cure it , only the real fibro hell can.

 

[vickythecat]

I can sadly truly relate to your friend. For a long time, I also told myself 'it was all in my head', that I would simply have to get over the rough patch & things would be better. And I also simply did not want to be labelled - and definitely not labelled with such a 'taboo' diagnosis = fibro. I really hope his family is aware of how difficult it is to accept a chronic illness for the person having that illness.. To know that it will never go away, that it will be there every day, every hour, for the rest of your life. It is something many people forget about the actual meaning of 'chronic'.

And yes, I had to hit rock bottom to finally accept it. Hitting rock bottom is bad, but can also be such an eye opener about your whole life. You learn about who you really are, what you find important, toxic people in your life...

You do have to make sure you are mentally strong though - that is key. (I hit rock bottom physically, mentally I was surprisingly still quite strong despite chronic mental illness) You have to be able to say 'ok, this sucks, but what can I do about it so that it sucks less?'.

It would help if you have supportive people around you, but also things in your life that keep you going. For me, it has always been my love & fascination for animals & nature. But it could be your kids, your spouse/relationship, your friends, your hobbies and/or your passion for cooking/hiking/puzzles/photography/knitting/gaming/music/not doing anything=just breathing etc etc etc.

 

[Marvis]

It's a long process and I still go through it. It's tough, I think, because there is no definitive test to show you that you have the disease - it's still really based on a bunch of subjective questions. I found myself questioning a lot - 'Did the pressure points really hurt when the doc pressed them or where they just tender?' 'When he asks about fatigue or pain, am I exagerrating? What does pain/fatigue mean?' - When I'm feeling better, I find myself doubting that I'm unwell. I often, even now, will catch myself thinking 'if I just change my diet or exercise more or take these supplements...'. Even now that I've accepted my disease, I question whether I really need that rest, or if I'm just feeling lazy - when to push, when to rest? I think it must be so much worse for a man, with all the societal expectations around the male role -- and expecting a child makes that so much worse. I think all you can do is keep supporting, suggesting that he pace, reminding him that his primary role is to be well for his child and wife... but he has to find his own way down the path.

 

[vickythecat]

I found myself questioning a lot - 'Did the pressure points really hurt when the doc pressed them or where they just tender?' 'When he asks about fatigue or pain, am I exagerrating? What does pain/fatigue mean?' - When I'm feeling better, I find myself doubting that I'm unwell. I often, even now, will catch myself thinking 'if I just change my diet or exercise more or take these supplements...'. Even now that I've accepted my disease, I question whether I really need that rest, or if I'm just feeling lazy - when to push, when to rest?

This is so so so so true for me as well. It is the never-ending questioning back and forth. One moment I think I must be a strong person with a high pain threshold to be able to do so much despite all the pain and fatigue, the next minute I begin to doubt myself and believe I am just lazy, it is all in my head, waste of a doctor's time, waste of space/oxygen.....

Also all these terms 'fatigue, pain, tender, tired, exhausted etc.' - I don't know what others feel, so how can someone to know how these things are supposed to feel? When I call my state 'exhausted', is it really 'exhausted' for everyone else? Or am I just weak and it is just a little tiredness, aka 'normal' tiredness. The term 'normal' frustrates the hell out of me.

Many years ago my shrink had explained emotional states very clearly - he told me 'as soon as it starts to affect your everyday basic life, there is something wrong, so you should seek help asap'. I kinda get it with emotions (when depression, anxiety, paranoia kick in), but I really have a hard time with physical symptoms.

I feel a little less alone, thanks to you Marvis. It is not a nice thing to share with someone, but knowing I am not alone in this does make me feel better. You are also not alone!

 

[Marvis]

he told me 'as soon as it starts to affect your everyday basic life, there is something wrong, so you should seek help asap'. Even that, though, is a tough one. I found it happened really gradually, so I never felt like I could tell if I was lazy or really affected. It really hit me a couple of months ago. I had a really weird migraine and had this lasting, aura-like affect for about six hours after, where I was blissfully, 100 percent pain free. I was like, 'Ohhhhhh!!! This is what it's supposed to feel like!!'. It was like sandbags had been taken off my body and I could move freely. Of course, it all came back again, but it was a lighbulb moment for me. Yes, you DO have this, it's real, you need to start taking care of yourself, and respecting how strong you are to be living as well as you do.

 

[Tipnatee N]

A while ago I was stuck at the period where I couldn't talk to anyone about how I actually feels about my fibro . At first I thought that's how I could protecting my self from spiraling out of control and denying everything was my first way of not getting a flare up or get worse. I told my love one to not to even mention it cause if I ever even once thinking about it I could never stop my self, and the pains from that would be unbearable . I didn't seek help at first few years not because I didn't want help but a thought of getting help scared me even that much more. I knew that was crazy, but at my first stage of fibro it was too fragile of a subject to mess with. It was my major depressant disorder that didn't allow me to accept the situation. Human emotions are very fragile so in order to deal with situations sometime the stage of denied is necessity . It was like walking on a tight ropes till I fallen and find the way to climbing back up. To me what I was expecting for a good friend help would be for them to have my back when I'm fully ready to reaching for help, more than pushing help upon me. Cause pushing help can be overwhelming and causing me to run away , pushing away everybody who cares, and protecting my self by putting up a wall even bigger than before. Simply because any pressure especially from the one who I care the most can crush the little room that I have left to breath. It's similar situation as grieving of the love one passing . All I need was someone to sitting next to me , not look at me and say no word.