Coming to Terms

[shazamataz]

Hi all,

Its only been a few weeks since I've been diagnosed with Crohns. I am feeling pretty good as the Pred must be doing it's trick, but clearly that can't last forever.

So, mostly I am feeling quite positive about everything, like I can do this, no big deal. But I have moments of total FREAKOUT, like how the hell am I supposed to live with this? With the sickness and uncertainty of hwne things may flare? How am I to plan anything ahead, not knowing what's going to happen? Its SCARY!!

I guess what I am asking is how people come to terms with something like this. I expect its similar to the grief cycle, though I can't remember the order of how that goes. I expect I am having some moments of denial at the moment - I just DON'T WANT to have this!!!

Any tips on getting one's head around this and not letting it get the best of you?

Would love to hear what you have to say

Shaz :Flower:

 

[D Bergy]

I have had, and still occasionally do have thoughts of "what am I going to do if my current treatment fails?".

Well, I am not sure in the sense that I have back up treatments, but nothing nailed down with any exactness. I usually have a fairly precise plan of attack.

I guess we are bound to think like this, once in a while, especially if we are not doing well at the time. The only thing that helps me, is I think I have enough information and useful treatments available to always be one step ahead of the disease.

I have the fact that my wife is still not cured of her Lyme Disease. She is doing very well, but I obsess about that more than anything else. I will settle for nothing less than a cure for that. I am getting close, but I am still not certain of the out come. Once that is resolved, it will be a huge load off my mind.

Just don't let your worry be for worries sake. When I worry, I dig in deeper into what has me worried. For me, understanding the disease makes it less scary, less mysterious. From that I get less worry.

Dan

 

[beth]

If anyone finds the magic answer I'd be interested too. I keep being reminded I've got this disease every time I think about breakfast, or lunch, or supper, and what drugs I'm supposed to be taking this morning/evening along with my others, or whether I should be making more appointments for a blood test next week/etc. It never seems to end. To not worry about it is like saying 'try not to think about elephants'... your mind then starts thinking about elephants whether you like it or not.

Going to try 'distraction therapy' this week: aka trying to get as much as possible done this week before I dissolve into a knackered blob of snivelling snot oozing all over the floor. I predict mid-afternoon I'll be halfway there.
:voodoo:

 

[beth]

It certainly does suck. The disease itself doesn't scare me, as such - it's not 'nice' and it destroys your dignity/etc. It's the drugs and surgery used to control/etc it. After my bad experiences with Aza and 6mp I'm currently bricking it about starting methotrexate on monday. And I can't do a damn thing to run away from that feeling of impending doom or the about to burst into tears. I hate it all.

 

[beth]

Ah so there is hope for mtx! That is so goog to hear muddin' gal.

And nope, you're not alone.

 

[farm]

Any tips on getting one's head around this and not letting it get the best of you?

Find support here and try to keep a positive attitude.

 

[fenway1971]

Find support here and try to keep a positive attitude.

I second that along with everyone else's comments.

The more I learn about the disease and focus on healthy habits, the better I feel. If I think too far ahead, I worry. And worrying only makes things worse. I have days when I freak out too. But, I try to distract myself.

 

[beth]

The support here is great. And I'd be utterly lost without this place on the interweb. But, dunno about Shaz, coming to terms with this disease is something inate. Like being at peace with yourSelf, disease an all.

Time I suppose helps, and getting to a stable point where scary stuff has been dealt with and one's head can 'process' all the bad stuff adequately.

Does that make sense...

 

[beth]

Part 2...

> keep a positive attitude ... try to distract myself

Yeah. isn't that a bit like friends and relatives who try to tell us it (Crohn's) is all in the mind and if only we ate better we'd be alright...

The only way I seem to stop myself going mad is to go for a walk, like I did today. I guess that's distraction therapy. But it doesn't do anything for the acceptance thang. I escape for a few hours just concentrate on putting one foot in front of the other. Looking at the world going by in a kind of detached, disassociated, way.

 

[Kit]

Hope this helps

I was diagnosed 2 years ago. At first I read everything I could on it, books, internet and such. I kept a food diary, watched my sleep. I got over whelmed and scared of what might happen so I backed off. My husband thinks I was in denial for a while. I finally came to the realization that the more I take care of myself, the better I feel. I sleep 10 hours a night, know what foods I can eat and what I should avoid (which still changes at times). I put my work hours down and am the the process of doing that again. I still have a hard time dealing with the thought that my life has changed. I do have good times and bad times as we all do. One day at a time and a good support system. I still seem to isolate myself at times. Hang in there it is an evolving process. Each person is different in what they can eat, what meds work for them. The suggestions and help here is wonderful. My husband has used the forum more than I, but always has some good answers.

Kit

 

[shazamataz]

Thanks guys,

I'm basically okay, just some wee moments of freaking. Mainly its about money to be honest. I live on my own, pay the bills and mortgage on my own. And this is already when I can only work part time and receive govt assistance as well. I worry that if I have to stop work I will lose my house!

It's also scary doing this alone. I do have close family and friends very near by, but sometimes living alone can make these things feel more overwhelming I think?! Muppet the cat isn;t much use, except for cuddles

I also have the worry (but am trying not to let this one get to me) of being 38 and single and really, really wanting to have a family - it's already very late to do this and now I have this disease to deal with as well!

Oh listen to me moaning away - I shall blame my grumpiness today on getting my period.

I am seeing my Gastro doc (groan) on monday and hopefully we will have a better idea of a plan of attack and so on then. I am a bit nervous because they may say I need surgery, though everything feels good right now. Knowing, however, is better than not knowing isn;t it?

Actually, I think that's the think, the not knowing what's going on in your insides?

Anyway, thanks again. I think I might go for a walk

 

[fenway1971]

We all have those moments. I'm 37 and childless too - where's Dunedin, NZ? (just kidding)

Vent away on here. It's quite therapeutic. Let us know how your appt goes.

 

[crohnsproof]

I used to be a basket case. If someone paid me a bit of sympathy by asking how I coped so well, I'd break down in tears. I am very good as 'hiding' all of my true feelings. Then, one day, I asked for help for my depression. I was placed on Lexapro about 2 1/2 years ago and it has really helped. I take things in stride now. I was so worried about going somewhere and having a PMP (poop my pants) episode that I'd work up a panic. All my husband would have to do is pick up the car keys and I'd have to go to the toity. But, it worked out. It will work out for you too......OK everyone......group hug!

 

[shazamataz]

oooh, I love group hugs

The good part is that I am not depressed. I was definately depressed to some degree earlier this year and leading up to getting really sick, but actually i feel mentally and emotionally better now than I have for ages.

Just those little worrying thoughts from time to time and I have concerns about being in denial - I expect that too will pass!

Thanks everyone, this place is awesome

 

[maria27]

hang in there, and it is alright to complain, be positive and good luck at gastro

 

[violetcreams]

Sending you big phat virtual hugs Shaz. Know how you feel. xx

 

[Agent X20]

Maybe I was lucky (???) being diagnosed when I was 16. Didn't really think much about it at the time and I've just grown up with it. I've had a lot of years when it didn't seem to bother me, and other times when (in retrospect) I suffered quite a bit but didn't go to the docs (very silly). It's only in recent years that I've got back on an even keel.

However, money worries are another perspective altogether, and don't help in keeping the stress down. Hope you continue to feel emotionally and mentally better (as well as physically better)

... I'll have to stay out of the group hug... I'm rather reserved and not much of a huggy person

 

[Agent X20]

Oh my goodness Mr X20 - that means you get a REALLY BIG group hug then!!! ((((((Hug)))))) :OP

AARRGGHHHH!!! No... gerroff!

 

[violetcreams]

haha

 

[forum contributor]

Do you do ok w/non-touching-virtual-group-hugs, Steve?

 

[Agent X20]

Do you do ok w/non-touching-virtual-group-hugs, Steve?

Hmmm!!! I'll have to think about that one!!! :duh: