How do I stop worrying?

[AmandaC]

I've been on Humira for about 3 months now and symptoms have improved dramatically, although I still feel really tired all the time and can't do half the stuff I used to have the energy for. I don't feel 100% but things have definitely improved. Is this remission?

This week I've been feeling a bit unwell and once had to sleep during the day. How do you stop worrying about getting sick again. When I start to feel under the weather I get worried that I'm going to get really sick. I start taking my temperature and weighing myself to make sure that everything is normal.

How do you go back to living a 'normal' life again without the worry that the disease is going to flare up again?

 

[jed]

hey amanda,

if you find out, can you let me know?

i know exactly what you mean, its weird feeling almost 100%.

 

[AmandaC]

Hi Jed,

Thanks, it's good to know I'm not the only one who feels like this.

I sometimes wonder if this is how life is going to be from now on? I'm always tired and sometimes I feel sick for no apparent reason. I'm even considering getting tested for glandular fever or chronic fatigue (if there are tests for these things) because I really don't understand why I feel this way.

I'm sure there are heaps of threads out there on fatigue but is this normal?

I just don't want to spend my life worrying everyday if my crohn's is going to flare up, but I guess it's up to me how I choose to view the whole thing. I know I have to try and stay positive but some days its sooo hard!

 

[fromthegut]

Hello .. welcome to your new normal. I have come to accept that this is my new normal. Worrying about gettign sick. The best thign for me is to keep goign to the Doctor and having tests done that tell me that everythign is ok. I can't tell some times if I am getting sick again.
Also I am just coming out of a deep depression as a side to being diagnosed with Crohns. I was more focused on getting into remisssion and getting healthy once I was diagnosed. Now I am dealing with a lot of grief. I went undiagnsoed for many many years. I thought I was just crazy. I'm also angry at a lot of people including Doctors and healthcare professionals.
I am trying to relax now and have some fun. I ahevn't ahd much fun in the past several years. I'm also not working and not sure if I will go back. if i do work again.. what kind of work I will do.
Getting this disease has made me really think about what I want from my life. Right now... I am jsut happy to sit down and paly a few games of Crazy 8's. Simple and keeps my mind off life.

 

[mamma_jodi]

"I control my crohn's it don't control me." First few years was hell!!!!!!!! One day I woke up alone, sick, tired, despressed, and ready to pack my stuff and move somewhere that no one knew me. But I didn't I told my self from that day on no matter how I felt, looked, or how many times I had to get up infront of the same people to use that bathroom. I was done letting this disease control my life. Some days are hard other are easy. So my advice to everyone with crohns is..... It maybe a disease you are stuck with but its your body that its stuck inside so make the most of everyday you have on the earth while you still can. Bring a smile to someone face even if they are not willing to do the same for you. You never no how your smile will affect someones day, I know I have had alot of people who smiled at me who I didn't know that helped me cause people I know stopped smiling at me and just had a sad look on there face. I ain't in to being sad, I don't want pitty I want to LIVE!!!!!!! So thats what I do.

 

[GI Joe]

I agree with you Mamma Jodi. I refuse to be controlled by Crohns. I get up everyday and get on with life. I do my best to keep myself healthy-eat right, excercise, do things I enjoy. If I have a flare, I deal with it but I refuse to dwell on when I will have a flare. I am a believer that excercise helps me in many ways--keeps me stronger, I look better, I have more energy and know I am warding off many health problems by staying fit. Excercise is just all around good for my self-esteem and my sense of well-being.

 

[AmandaC]

Thanks for your advice guys.

I have so much to be grateful for and I just need to focus on that. I don't want this disease to run my life. I really liked your idea mamma jodi when you said to smile at someone else. I need to look at what I can do for others to take the focus off of my health and myself. I truly believe that what you give out you will get back so that's what I'm going to focus on.

Gi Joe - exercise is also a good idea. I've been doing a yoga class once a week when I'm up to it and I'm also a dance teacher so I get lots of exercise at work. When I'm feeling down I'm going to take a walk to uplift my mood.

fromthegut - It has taken me awhile to get used to my new 'normal'. I just went to the doc to get another blood test today. It also helps me knowing that all is in order.

Thanks again! Your posts have really helped me.

 

[Ataraxia]

Amanda, you're definitely not alone. People worry all the time. I worry all the time.
What I find helps is undertaking a new hobby. Try something new. Develop more interests.
Basically, I'm saying this: Physical pain cannot always be conquered, but you can keep your mind busy to reduce anxiety.
I find reading and writing helps.

 

[AmandaC]

Thanks A.taraxia. It helps to know that i'm not the only one feeling like this.

I used to journal alot but have got out of the habit. Thanks for reminding me to do the things that work. I will definently start writing again.

Thanks

 

[drew_wymore]

Hi Amanda =)

Crohns can affect all sorts of things. Remission is defined as the absence of symptoms. I skimmed the replies already but one thing you may ask your doctor is to check all your nutritional levels as they play a vital role in your energy levels. B6, B12 (especially), protein and other important things might be lacking.

I also always felt really tired on Humira but that doesn't mean it's the cause. Plenty of folks here have taken it without getting tired.

Maybe talking with a counselor or posting here will help with the anxiety =) It's not un-normal to worry. I know several folks here deal with anxiety related to their illness and it's not uncommon or wrong. We all deal with it in one way or another though. You're not alone which I think is the most important thing to remember. You've got a whole family of Crohns friends here whenever you need us.

 

[AmandaC]

Hi Drew,

Thanks for your reply. I'm seeing the specialist next week so will definitely ask him to check things out for me.

I had wondered if the Humira was making me tired? Will also ask specialist about this.

I'm already seeing a psychologist about my anxiety which helps alot. I'm so grateful for all of the support I get here.

Thanks again for your advice.

Amanda

 

[Cookie]

I am glad to hear that you are feeling better on the whole, but I know what you mean about the worry. I would not say that I'm in a flare right now, but I definitely don't feel well either. I always start to wonder if I over analyze every little thing because I know I have Crohn's and am worried that I am going to start another miserable flare. These past few weeks (or months?) I have had a lot of strange little things making me feel "not right". I can't say that I am sick, I just don't feel well. I try to "will" myself through this, but in the end, I always end up back where I started.

Does it ever end? I just want to feel good again!:confused2:

 

[AmandaC]

Hi Shadycat,

I know what you mean. This is my first time in remission (I guess that's what you call it) so I'm not sure what to expect. I asked my GI yesterday if this was my new 'normal', not feeling myself but not feeling that sick, and he really didn't give me an answer. He said I shouldn't be feeling so fatigued because all my blood tests indicate that the disease is no longer active so he said it could be from a number of things such as medication, sleep disorder or anxiety/depression. Great!

I hope things improve for you soon. Try to distract yourself in any way possible.

Amanda

 

[D Bergy]

I use the same method to not worry about this disease as I use for anything else I might worry about.

I learn all I can about it, have a plan of action, a contingency plan and execute the plan. That way, I feel I am in control of the disease and not the other way around.

Most people worry because they feel powerless against a situation. If you eliminate the "powerless" part of the equation it is not nearly as worrisome. At least it works that way for me.

Dan

 

[AmandaC]

Hi Dan,

That makes so much sense. It does make me feel better knowing that I've done everything in my power to stay well, supporting my body in every way possible.

My anxiety diminishes every day as I stay well. I'm starting to gain a little more confidence and hopefully will return to living a normal life where CD is a part of who I am but not something I think about everyday.

I think I'm getting closer to that.

Thanks!