Coming to terms with having a chronic disease.

[Miss Rose]

Since my diagnosis two weeks ago I am having a real stuggle coming to terms with the fact that I have a life-long chronic disease. I don't feel like I should be sick. I don't really feel sick although I am exhausted all the time - but tiredness seems like a really lame symptom.

I don't look sick but am having side affects from the dugs (pred and pentasa). I definately need to work much less and rest more but all this just makes me feel like a complete woose.

No-one really knows or understands crohn's so I don't really feel it gets taken very seriously (even by me maybe).

Anyone else feel like this ?

I sometimes feel like I am just exagerating it all - especially as I have been ill since May without diagnosis or treatment and just got on with things. I guess I just feel guilty now for allowing myself to take things a bit more easy.

 

[Guestly]

You are not alone! Your post above could have been reading my mind! I feel so lame when my main complaint is always " I'm soo tired"... It's totally crap!

Dont beat yourself up. It take time to get yur head around the diagnosis, the main thing is to stop feeling guilty and starting looking after you!

Lishyloo

 

[Guest1]

We all feel this way at one time or another -- perfectly natural reaction to everything that has gone on with us.

 

[beth]

You are not alone... just doing anything more than the simplest existing sometimes feels like a mountain.

 

[Peaches]

Don't beat yourself up Miss Rose. It will take some time for everything to sink in and for you to process it. Until then - do what your body says to do. If you need more rest, take it. It will help your body heal. Hard to do sometimes on Pred, but rest is a good thing. We all understand and have been there!!

 

[imisspopcorn]

You are not alone Miss Rose....This is a very isolating disease because it can be quite embarassing and most people have no idea what it is. We are here for you!!! Feel free to rant about it if you need to.

 

[chelli]

It's taken me about 8 mos before I even came close to the acceptance phase of this thing. I'm still working on it and I was diagnosed in March.

Good luck.

 

[pb4]

You're definitely not alone...I've had this DD for 18 yrs so far and it still overwhelms me, I try and take it one moment at a time, taking it one day at a time doesn't work for me cuz one part of my day could be horrible and then turn around and be better, or vise-versa.

I got to a point where I was very depressed and of course lots of anxiety about leaving the house...I managed to pull through it eventually with exercising regularly (great for the mind and body) and altering my diet and taking the natural anti-inflammatories (I'm either allergic or non-responsive to traditional oral RX used for CD).

Hang in there, you'll have good days too, try and focus on them and remission sounds like a great thing too (never been in full remission myself, but I'm an odd-ball).

 

[Pirate]

I don't have CD. I don't have CD. I don't have CD. I really don't have CD. I must be imaging this. Nope, its still there. Since FEB 1986 I have tried to convince myself that I don't have it but it doesn't help when it gives me an unfriendly reminder.

Like the rest of us, when you get into remission you tend to not believe its still there waiting.

 

[shazamataz]

It is definately overwhelming Miss Rose. I was diagnosed in July and only a starting to feel 'comfortable' with the whole thing now. Not that I like it, it is just less scary than it was then. I have been lucky this far in that my symptoms are very mild at this point thanks to the steroids of course. I try to keep in the mindset that I'll apprectate every day that I CAN do things and make the most of what I CAN do instead of focusing on what I can't, which has become a bit of a pattern of mine over the yars with Chronic Fatigue also.
My life is definately not where I would have liked or expected it to be at this time - 39, single, part time crappy job while I have a first class honours degree and a masters! However, there are lots of good bits as well.
Be kind to yourself and remember whatever you feel emotionally is okay

 

[smurphy0925]

I know exactly what you mean Miss Rose. Most of the time I don't look sick, but my insides are raging with inflamation and I'm so very tired from being in the bathroom. I thought the pred would help more, but its not this time. Hoping that when I'm fininshed with my radiation for breast cancer that somehow the inflamation will calm down. Someone asked me in a phoney tone today if I was feeling alright and I was not very nice to them and now I feel badly about what I said. But pleeeese if you only knew how much pain I'm in. Some people have never had to deal with anything like this and they have no clue !!!

 

[mwb3779]

You are definitely not alone. I was dx in Oct with this crap. I took a leave of absence from work in June not knowing what the heck was wrong with me. There are days where you will feel like crap (no pun intended) and then days where you feel pretty normal. They can even flux from morning and night. Keep strong, we can all help each other.

You're the lucky one, when people find out I have Crohn's they insist on telling me "Oh man, I'm sorry. My cousin or friend died from that. Or they have it and they are really sick" Sometimes I wish people didn't know what it was. I could educate them a little more.

 

[shazamataz]

when people find out I have Crohn's they insist on telling me "Oh man, I'm sorry. My cousin or friend died from that. Or they have it and they are really sick" Sometimes I wish people didn't know what it was. I could educate them a little more.

I HATE that! You get 'the look', don't you? Like they know it's bad but are too uncomfortable to say anything so just give a withering, pitying look instead. I HATE it!

Or, you get them saying something like 'I get a sore tummy sometimes as well' - they have no idea!
I had a friend say recently that she'd been out for dinner and eaten too much and felt so sick and was farting all night and such. I wanted to slap her! Crohnies have this ALL the time and often whether they eat or not!

 

[mwb3779]

Or, you get them saying something like 'I get a sore tummy sometimes as well' - they have no idea!
I had a friend say recently that she'd been out for dinner and eaten too much and felt so sick and was farting all night and such. I wanted to slap her! Crohnies have this ALL the time and often whether they eat or not!

This part made me laugh! If they only knew what it felt like to have your insides hate insides. Always fighting. No one ever gets along in there unless theres drugs for them to take.

 

[Pirate]

My current foreman use to give me the look when I was feeling bad. One day at lunch time he decided to be a smarta$$ about me running to the bathroom so much that day. Well I know he has a weak stomach so I laid it on thick. I started out telling of all the cramping and D and what it looks like in the toilet. described the inside of our intestines when things are inflamed and what an ulcer looks like. I told him to imagine a little monster with golf spikes on running up and down your intestine with a hammer smacking it against your intestinal wall. I told him so much crap he actually retched a few times in the lunch room and couldn't finish his lunch.
He never bothers me anymore and actually seems genuinely concerned. He now asks questions about tests and what they do and how it will effect my CD and what treatments are out there. He actually wants to be educated about CD.
The day before yesterday he hurt his back (never had a sore back in his life) and was whining about it. I let him know that I have this same problem almost every day because of the CD.

 

[farm]

I tried to ignore it for a couple of years, but it refused to be ignored.

 

[Miss Rose]

Thank you people - I keep forgetting that I have only been diagnosed and on drugs for two weeks so I haven't really given myself a chance have I?

I keep positive most of the time but I sometimes wonder if I am thinking about it too much - or going on about it too much - even being on here too much (husband gives me that look - chatting to strangers again?!! - I don't think he gets it).

I really feel so much better this evening so it is easier to be positive but then at 3 o'clock this afternoon I was feeling really tired and down (been a tough day though) and everything seemed bad.

It's good to know that it not just me though. I guess I need to give myself a break.

 

[Miss Rose]

By the way - every person (apart from my family) who I have told so far also has a "sensitive" tummy. Bless !!!!! Thankfully I have not had the "Oh yeah, so and so had that and died horribly" response yet. I will have to think up a suitable response so I am prepared - any ideas ?

 

[shazamataz]

- even being on here too much (husband gives me that look - chatting to strangers again?!! - I don't think he gets it).

I have decided not to even mention this site to people now. Any time I have talked about it before I find people get that look like 'what sort of a weirdo are you, talking to people on the internet?' I guess you have to have a disease such as this to understand then need for support and sometimes the only real way to get it is from people who totally understand, even if they are cyber people!

 

[mwb3779]

It truly is a place to vent, share successes, anger, info on CD, and helping each other out. Like Shaz says cyber people are still people. I feel like I am really getting to know some of these people. Like friends. I do consider some of them friends.

It'll be ok. That's what I hope for anyway. You should too. We all should.

 

[pb4]

I keep positive most of the time but I sometimes wonder if I am thinking about it too much - or going on about it too much - even being on here too much (husband gives me that look - chatting to strangers again?!! - I don't think he gets it).

Don't worry about that either...my hubby thought it was strange at first too, likely because we were all brought up to be more private about our pooping habits, but I've been posting on support forums for about 5 or more yrs now so he's quite used to it....he calls you guys at all the forums I go to) my poopy friends, he'll ask from time to time how things are with my poopy friends meaning my fellow cybre crohnies. Not that hubby and I are private about pooping issues (trust me, he always wants to tell me all the details about his just to be sure that "his" are still okay LOL)