Struggling mentally (again!) with this thing

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Hello ladies,

 

Is it just me, and have you all gone past this stage, but I am really struggling with this thing, trying to get my head around it. I need to know why I have a weird, obscure thing that no-one has ever heard of (my GP said she'd have to Google it, my acupuncturist said that I'm the only one he's ever treated with it, family members have never heard of it). It just does not fit in with my image of myself. This isn't ME. I know plenty of people with small, benign things like allergies, eczema, varicose veins, etc.., but WHY THIS?  I am writing to ask how you have got through this question - how did YOU make sense of this condition because I can't make any sense of it at all?  

rocket's picture
rocket

For me- I stopped trying to "make sense of it."  That said,  I'm human, and very mental (ie in my head all the time), so of course I still ponder it and desperately want to understand and fit the puzzle pieces together. 
But I took the FOCUS off of making it make sense, off of NEEDING to make sense of it, because I saw that (a) that might be impossible -- in my lifetime I may just never know absolutely, just as in times past there were many conditions labeled mental disorders or hysteria or illegitimate or totally unknown but are now proven as physiological condtions; (b) there are other conditions out there besides ours for which there is still no/little understanding either, they're just rare so we may never know or hear of them; (c) because I'm so mental, I needed to give the whole making-sense thing a rest or I would drive myself crazy. 
So my big epiphany was seeing that it isn't actually a NEED, as in essential.  Just because I can't and may never make sense of it doesn't mean it isn't real or that I can't get better.  Would it be really nice and helpful to know?  Yes.  Does this mean I stop reading or researching or looking for answers. No.  But I try to not let the NEED drive me (crazy) as much, and sometimes I succeed.

deir's picture
deir

Hey! We must have posted at the same time and said similiar things! Funny!

deir's picture
deir

Oh honey((((hug)))) I don't really have a great answer but a huge part of it for me has been to let it go. I just stopped trying to think my way out of it. I have been on a spiritual quest and so I also literally have turned to God and said-"I can only do so much myself- now please- help me with the rest" A weight was lifted from me that day. I don't know WHY? about anything. All I know is I have made this leap of faith and now I can do my part and that is all.
 
This is a huge topic but those are just a few thoughts.
Take care.

junie's picture
junie

 

 

hey vin, i felt that way daily before and now, i still have those thoughts on occassions....why me? despite our advances in technology, surgery procedures, new medications, etc....there's not an answer to bladder inflammation?!?! i have seen an acupuncturist last summer before contacting dr. b. and from my understanding, acupuncturist can help a tiny bit with the pain....only if i knew, i would of stopped the sessions. i spent so much money because of my bladder pain. a urologist refered me to see the best of the best urologist. supposively, he trained other urologists about i.c. so, i had all my eggs in a basket. i thought he would fix me, but left me dissappointed! i went nuts...why me?! i have to live with this sh*t for the rest of my life, until when i decided to call to see dr. b. before all this, i felt like an alien. even now, when i mention the reason behind this inflammation, people look at me with two heads.  
 
vin, i know you want answers, but like rocket and deir said, we have to let go. we are unable to find answers to every situation and only thing we're going to do is drive ourselves nuts. you know you are not alone. here we are, all of us, REALLY understanding what we are going through mentally and physically. I have a phone app called pulse which updates me with all ic postings and i sometimes read it and i feel so BAD for them. they sound desperate and i have gone there once and mentioned what i'm doing....and guess what, they don't believe in it and all they do is complain.  i feel so so bad. 

 

 

Clueless's picture
Clueless

As Rocket said, there is no making sense of it.  If there is a reason for it, it is still unknown.  Many people have not heard of IC, but sometimes I run across some who have.  It tends to make you feel so alone.  You just have to do the best you can with the situation.  That's the conclusion I have come to.  We are all trying to change things for the better, but whatever we can't change, we have to accept.  Perhaps you could educate your family and doctors on the subject.  The ICA has been constantly working to educate doctors and the general public.  They have pamphlets you can send for that at least explain a little about the disease that you could give your docs.  Don't allow these people to make you feel like a freak.  According to the ICA, a lot of people do have IC.  Probably since it isn't as prevalent as diseases like heart disease, MS, and some of the more common ones, it tends to get shoved to the background.