What are your coping techniques?

[Cat-a-Tonic]

For those who have been undiagnosed, especially for those who have spent years without answers, what are your coping techniques?

For me (I've currently been ill & undiagnosed a few months shy of 2 years), my #1 coping technique is to just take things one day at a time. Sometimes, especially when I'm flaring or feeling awful, I start thinking "what ifs" such as, what if my future is going to be this miserable every day, or what if I don't ever get a diagnosis, or what if it takes years to get a diagnosis and I'm miserable for years? I have found it's terribly stressful and depressing to have thoughts like that, so I try not to even think about the future when I flare. When I'm feeling like crap, I make myself think thoughts such as, I just have to get through this one day. Tomorrow doesn't even exist, I just have to make it through right now. I just have to make it through this wave of pain, this bathroom trip, etc. If I can break it down like that, it's so much easier to deal with the dual demons of flare plus being undiagnosed. I don't know if it's totally healthy to live in the moment like that, but it seems to work for me. What are your coping techniques?

 

[hannah-rose]

Hey Cat how on earth have you been undiagnosed for 2 years??? I've been undiagnosed for 7 months (over a year really but the first was more a misdiagnosis) are drs even treating you for crohns?

My coping technique is similar in the sense that i try and take every doctors appointment as it comes and only think about the weeks up until the next appointment. ive just been told theres a good chance i have crohns and ill end up having inflix/remi but im trying not to think what would happen if the drs are wrong, im just trying to focus on the next 4 weeks - the couple more tests and appointments before the inflix/remi, and not think beyond that in terms of what could go wrong.

I also have a bad coping technique which is to turn feelings of upset into anger and to channel them into resisting selfpity and to associate feelings of selfpity with weakness, and not let myself be a weak person. its probably a terrible technique of self denial but i try and remain strong and id rather feel angry than upset and i want to channel that anger into fighting this illness and living each day to the full. i will NOT let this break my spirit and i WILL achieve everything I want to not matter what. That's how I cope!! I wil never let it beat me!

 

[Cat-a-Tonic]

Hannah, I've had quite a lot of tests but most of them came back normal! The only ones that came back abnormal were mostly blood tests (my CRP has been a bit high in the past, my sodium is usually low, stuff like that). I have been treated for Crohn's - I was put on pred for a short time, and I responded very well, and I was also put on Entocort for 7 months and got pretty close to remission during and after that time. I still feel like I'm pretty close to remission, and my GI doesn't think that now is the right time to do more tests (I have mixed feelings on that matter) so for now we're just monitoring my symptoms and will most likely do more tests when/if I do flare up again.

Glad to hear you're getting some Crohn's treatment soon too. My best friend (also a crohnie) has been on Remicade for a little over a year now and she's been doing pretty well on it. I hope you have a good experience with it too!

 

[mayhavecrohn's]

my #1 coping technique is to just take things one day at a time.

my #1 coping technique is to just take things one day at a time. i also try to read books and listen to songs on youtube and try my best not to think about the pain try to keep it off my mind which is hard to do

 

[dannysmom]

Hi. My 14 yr old son is undiagnosed for 2 years 7 months now - without any effective treatment so far. He has not felt well enough to go to school so gets home tutors. He seems to cope by trying to distract himself from pain as much as possible (video games, movies). School work is hard for him due to constant headache and fatigue. I try to focus on one day at a time too.

Has anyone been to therapy? Does it help? We are thinking of having Danny see one.

 

[StarGirrrrl]

Well if you want to be techinical I am now coming up to 5 years undiagnosed.... been varying degrees of ill in that time, been good at times but now quite bad and it's a possibility that I have now developed further problems because I have been ill/untreated so long, but we shall see.

One day at a time is good. And, when it all just gets too much, I go to be early, sometimes shutting out the world is the only way I can cope and carry on. I have found new and fun low energy hobbies, and a small volunteer job that is done mainly from home.

I read alot of books, rent dvds online and watch online tv alot, especially at night, helps take my mind off the pain, relax and be able to sleep.

 

[allieinwonder]

After being undiagnosed for so long, I have gotten into a routine with my flares. I have really taken root into the spoon theory story (google spoon theory if you haven't read it!), and when I am in a ton of pain, bad D, etc, I take a "spoon day". I usually cuddle with my corgidor on the couch, sleep, watch tv, and play around on the internet. In a normal flare I sometimes have to take a spoon day after two busy days...when it is really bad I take two spoon days in a row.

This is all going to change once I move back home for four months. I wont have the time to take spoon days because of schoolwork and sorority obligations. When I was there before I dropped out and came here, I relied on tramadol at night, spending time with my sisters in our living room in PJ's. I'm going to have to come up with a new routine for all this, but I don't think it will be too hard. The hardest part will be living with sisters and trying to keep a smile on my face when I am in my worst pain!

 

[crag]

For me it's also taking things one day at a time, if I feel well I'll get in the garden and do bits and when I'm bad I have a whole lotta sofa time!

I also take solace in the fact that i know there are many people who are suffering more so than I am, knowing that there's somebody worse off sounds bad but it's a way of dealing with things for me. Otherwise whatever is going on inside me would be defeating me and I'm too much of an upbeat person to let that happen!

This whole forum and sub forum is also a coping technique in itself, so many good people on here with so much help to offer really does make the dark days brighter.

 

[25times]

Although I have a diagnosis, I spent years and years being ignored, misdiagnosed and mistreated, so I definitely know where you are all coming from. I've been having crohns flares since I was 6, on and off of course. When I was first diagnosed, I coped by ignoring it. I always got better on my own before, this time would be the same. I didn't need the crazy drugs, I would go into remission soon. Fast forward a month later, I was in the hospital. I couldn't afford the treatment, even if I wanted it. So they started me on entocort in the hospital, and got me some medical coverage to pay for it. I figured I would start getting better. Nope. One month later, I was back in the hospital. It's been almost 6 months now, and I'm still flaring. I did have about 3 weeks of relief when I first started taking prednisone. I started flaring again when I tried to taper.
I get very depressed sometimes, and I cope with that by coming on here, and other websites, and reading about other people's experiences. Whatever I'm dealing with, someone else has gone through it and survived. Reading about other people with crohns really helps. I also take medication for the many symptoms I have. I know if you're undiagnosed, it can be very, very hard to get proper medication, but if you can find a sympathetic doctor, he can prescribe you something to help. I have a pill for almost every symptom, and I don't feel guilty for using them when I need to. I never abuse any of my medications.
The one thing I have a hard time dealing with is the exhaustion. I'm always tired lately. I'm very lucky to be on disability right now. I don't have to worry about getting up for work or missing work or being late. That helps alot, but I still feel guilty and useless sometimes. I spend almost every day on the couch, sleeping or resting. I know I'm supposed to be doing that right now, but I still feel bad when my boyfriend gets home from a 12 hour shift and the house is a mess and I haven't done anything all day. I cope with that by talking with him and trying to help him understand how I feel. It's hard to explain how much pain I'm in, or how tired and nauseous I was all day, but I try to explain it in different ways.
I like to watch movies about people with chronic medical conditions. Sometimes, my boyfriend will watch them with me. If I see the characters going through something that I've gone through, I'll tell him and we'll discuss it after. It helps him understand a bit better, I think.

 

[Omaklackey]

Distraction is the main key to my coping with the Pain. I get horribly sick from any kind of Narcotics so I stay away from them completely. It can be done. I also had a scary thing happen in the hospital with a RN induced overdose and I've been afraid of going there again. Number 4 abdominal surgery I went almost completly drug free and distraction is the biggest key. If I can't find something to do to take my mind of the pain then a good book and a very hot bath help. I used to like wine while in the tub to relax but my stomach no longer likes wine. Sometimes the pain gets so bad and then focus meditation like they use in natural childbirth is very helpful. I also use CD's of quiet music to help take my mind away from it.