Interesting perspective - Maybe we've all been here, I am there now :(

[Binxybop]

Below is something I found on a website. It may seem a bit depressing but I feel it has pinpointed exactly some of the feelings and emotions I have been going through very recently. I just wanted to share it...


"When you first learn you are diseased, your limbs surge forward of their own volition and you are standing there on the white, cold floor. The doctor says, "Come back next week and we'll start the blood tests. We need to stop this from going further." You wonder if you should thank
him or swear at him, tear up his office and scream. He points you to the waiting room and when you manage to lose your way anyhow and the nurse with the big nose and ugly shoes has to point you again, you think, Will I forget how to look for signs?
When you first drive home from the doctor and it's not just a checkup, you turn on the radio so the vibrations fill your seat and your ears. You turn it off. You don't buckle your seatbelt.
When you first have to swallow nineteen pills, and you've never swallowed any before because there's always been chewable, you choke and gurgle down what must be three liters of water. You try Gatorade, milk, orange juice. You throw up the Gatorade, the milk, the orange juice, and the pills. You try again.
When you first tell your friends, they say "I'm so sorry" and touch your arm. You want to hit them, to punish them for their soft hands and pink cheeks. You tell them not to worry about it. They forget in stages, first just by not thinking of it, not wondering or asking if you are in pain. I feel like this at the moment
When you first sleep alone, with the lights off, curling into yourself in the musky deep warmth of the bed, you can't help but close your eyes. Behind your eyelids, you see only shades of red and black, a pregnant sea of lurking ants the size of mitochondria, the system on which you've been running and running and running..."

 

[Peaches]

Heavy stuff Binxy!! I get lots of it. I remember having to swallow M&M's to learn how to swallow Asacol because I had never really had to swallow pills before I was diagnosed. I felt pretty good about getting through that. Then two weeks later...off to the hospital for emergent surgery. Afterward, my potassium was low so they wanted me to swallow these HUGE HUGE pills. I remember crying in my hospital bed like a little baby (I was 27) over having to get those things down. Now I can probably swallow 15 pills at a time, have no problem getting poked multiple times in a setting and have no qualms with docs seeing me naked. It is just a fact of life. When "normal" people see you in that setting for the first time - sometimes they freak. They don't understand how you could be so comfortable doing "that". Well....do it for 13 years....it just is what it is.

There is a space that "we" are in - like here. The space where everyone gets the Crohn's thing - it is almost comfortable. Then there is the space that everyone else exists in.....without Crohn's. I will probably always feel like I'm in a bit of a bubble in that space everyone else is in - because only *I* can understand fully how I feel. But, at the same time, I have the realization that even within that space that everyone else exists in - everyone else is in their own little bubble too. Everyone has their issues - some of them not as bad as what we have, some of them so so much worse. Having this disease gives me the ability to have empathy for those that are afflicted with something - physical, mental, emotional. It makes us all linked in a way.

I hope the clouds can clear for you Binxy! We are here for you and you know we understand. We don't forget....it is always with us.

 

[Pirate]

Peaches, that was a beautiful description of us as individuals and how we need to see others. It is a great way for us to learn to understand each other no matter what we see from the outside. There may always be something more hiding on the inside that we don't see.

 

[Binxybop]

Peaches, I know I would usually understand what you mean so much, but I know I am just feeling ridiculously sorry for myself at the moment to fully appreciate it. I think when I read it back in a few more days I'll be ten-fold more appreciative of it than I am being right now :yfrown:

I'm going to look back at this and want to slap myself for being so very selfish.

It's as if any common sense or feelings/empathy for others who "havent got what I have" has just left me. I know its selfish and I know it will eventually go away, but right now I just dont give a damn and it feels good to bash it out on a computer keyboard.

 

[Peaches]

Bash it girl - it is just where you are right now, and that is *fine*. I have definitely been there (ask any one of my family members - they have seen me there). I hope it will pass for you....but everyone needs their own time you know? Main thing is, I hope you get to feeling better. That is the key.

 

[Jennifer]

For some reason this reminds me of when I was in the hospital years ago before my surgery. My mom gave me a notebook to write in while I was bored. I was hospitalized at the time so boredom came easily. So I wrote in the notebook how I was feeling both physically and mentally but would trail off and write whatever was going on in my head. I wrote about friends, boys I liked, things that I saw in the room etc.

Years later I found the notebook and read it while I was feeling sad, useless, and helpless. It cheered me up a lot as cheesy as that sounds. I had every right to feel absolutely horrible about my life while I was in the hospital waiting for the doctors to decide if I needed surgery or not and all I could write about at that time was how bored I was. Why wasn't I a lump of depression then I'll never know but I do think that writing everything out helped and could even still help.

I think everyone should try this method at least once. Even if it doesn't cheer you up at the time, it's something fun to read years later.

 

[Peaches]

Great idea Crabby!

Binxy - are you feeling any better?

 

[Binxybop]

Reckon I've cheered up some now. Mood changes day to day, but thankfully not as blue when I first started this thread!

Have had a barium meal and x-ray test yesterday and although the full results aren't back from doc yet, the x-ray chap said it looked pretty normal. :emot-dance:

Looks like I'm affected just in my large bowel. Such a relief! I am still in a lot of pain and discomfort so I am hoping the doc will try another drug approach (pentasa & pred is just not working).

There is definitely something therapeutic about reading back comments we have made on how we have felt at times.

I am crazy grateful this forum exists :wub:

 

[Peaches]

Glad you are feeling a little better. This disease can eat your lunch if you let it. I always try to find the happy (and boy, that doesn't always work!). Glad everything looks normal but your colon - that is my situation as well at this point.