In a bad place and could use some reassuring.

[Rosie Foreman]

My names Rosie and I'm 20 years old from the UK. This is the first post I've made to the forum and I'm not quite sure what I'm asking for here, reassurance, help or some honesty but here is my situation.

I've had my "head in the sand" about my cf for quite a while now and kind of refused to acknowledge it, I have been admitted for IV's roughly once every 8 months to a year since I was 13, and every but in the last year or so it's really knocked me and is now becoming tricky for me to ignore, which has lead to a lot of over thinking and generally feeling quite down about it. My most recent admission 4 weeks ago has resulted in my lung functions going down. I'm doing the treatments and taking the meds and I don't feel like I'm getting anywhere, it's getting disheartening.

I hate my cf and I simply don't want to do any of it, but what choice do I have? If I don't take the meds I'll get worse... If I do I'll simply slow it down. And that's what I'm struggling with, the fact that it's probably not going to get better despite my best efforts and I don't really know where to turn. In the last year I've lost two jobs due to time off ill, I've lost so much confidence and feel quite isolated, not going out and doing much has lead to having no friends and health problems mean I've had to move back with my parents after living with my partner. I can't help but feel that things would be very different if I didn't have my cf and it's really getting me down, how am I meant to fix this negative thinking, find some motivation and keep compliance up?

Thankyou in advance x

 

[beleache]

Hi Rosie,

It is normal to feel down every so often when dealing w/ CF. Have you thought of seeking professional help ? I did after I had renal failure & it did help me. Is there anyone you can talk to about how you are feeling ? Maybe a Priest/Rabbi ? A close relative ? You shouldn't take this on alone w/ out some support.

Have you thought about going on disability ? It was the best move I made & when ppl ask me what my job is I say, " taking care of myself is my job"

As far as being compliant & still getting sick, that unfortunately can be true. But as far as Im concerned , you should do your best to stay as healthy as you can for as long as you can. There are times if for whatever reason I may skip a treatment or something , but I dont beat myself up over it cause I know I am doing the best I can.

Dont get me wrong , I know CF sucks, but I'll be damned if I'm not gonna go down fighting. I hope I have been some help to you. Please know that you are not alone. So many of us have many of the same feelings.

Take care <3 joni

 

[beautifulsoul]

Hi Rosie,

I agree 100% with everything that Joni has already stated below. It's normal to have those feelings but not healthy to think negatively ALL the time. I have professional help every 3 months and from time to time I talk to certain family members that I'm really close to. I also have the CF community here that I turn to for help when I feel like no one else can understand me.

I'm on disability income like Joni and also explain to others that "my health is my job" It's definitely overwhelming and even depressing sometimes and yes, I do forget things here and there because it's so much to remember. I write reminder "to do" notes all the time. I set alarms on my cellphone to remember to take medicines. I have a notebook filled with only doctors/nurses names, numbers and e-mail addresses. Organizing things just a little bit helps me out.

Don't let CF drag you down to the ground. It's reality. You can't take it away so you might as well try to improve a few things at a time. This is a bit harsh but, the only thing keeping you from doing anything is yourself. It's the truth. I tell myself that every time I'm going through a rough patch. Do you have any hobbies/things you enjoy doing? Keeping myself busy with my art has helped take away negative thinking and some of my anxiety.

Keep your head up!

Hugs to you
(L)

 

[welshwitch]

I've been there! It's a really tough place to me so you're not the only one. Finally facing the reality of CF was a very painful process for me in my late 20s (I'm a late bloomer I know It got to the point where all I could think about was having CF and that I was going to die. I kept thinking, "If only I didn't have CF, I would do X, Y, and Z." Or, "If only I didn't have CF, my life would be <insert better life here>. The voice in my head was becoming all consuming. I didn't like how much mental space it was taking in my head.

I finally bit the bullet and saw a counselor. And I was finally able to look at a different perspective. But it wasn't easy.

Fast forward 6 years....I'm 33, and loving life. My CF "voice" occupies a bit of my head space, but instead of a negative broken record, I am learning about cool treatments, empowering myself to exercise, and enjoying talking to other CFers online. I'm reading about other moms with CF and working on my life plan and goals. So, CF is still there, but I've accepted it as just another part of my life that isn't going away.....and, I'm learning to incorporate it into my life just like any other fact. I'm constantly inspired by the "old CFers" on this site and work my ass off in the gym so that I can be just like one of them. I have decided that I just love life too much to give up so easily. I'm not going down w. out a fight!

My advice: go talk to someone. This is too hard to handle by yourself. Don't put it on friends or your parents or your boyfriend. A professional. Once you start that process, things will turn around.

 

[nmw0615]

Two years ago, I was exactly where you are now. It's a dark place to be, but by seeking help, you've managed to take the first step out.

I had to start with the little things. I'd reward myself for doing my vest and taking all my pills for a day. And then for a week. And then I'd have a set back and I'd have to start all over, but then I'd be able to do it for a month. Finally, today, I blew my highest PFTs in two years. And it felt amazing. All of that hard work was worth it.

It's definitely not easy to live life with CF. There are so many things I wish were different in my life, but I also know that I wouldn't be who I am today without all the struggles I've gone through. I talk to a counselor regularly and I take an anti-depressant as well. Both of those things have helped me to get to where I am today. I like to say the medication helps me put my thoughts in order and the counseling lets me work those thoughts out.

Something I came to realize the past 6 months is that there are a few things that I just will never be able to do. Like run a marathon. I really have no desire at all to run a marathon, but the idea that I physically can't makes me sad. But there are things that I can do that will give me that same sense of accomplishment. I'm currently working on getting back into shape so I can hike a 14er this summer. I'm also trying to fulfill a dream of writing a novel. I figure if I can get to the top of one of those mountains and finish writing a book, there's not much else I can't do. I am my own worst enemy, but also my best cheerleader.

I used to look at my life as though I had a time limit, so why should I really bother with anything? But now I look at it as though I have a time limit, so I need to make the most of every single minute. I still have my bad days, when I don't really want to get out of bed. I give myself those days, as long as they don't occur too frequently. Having a good cry can be immensely helpful; just try and balance it out with a laugh.

I know how hard it can be to look at the world differently than you are now. It is not a choice to feel like this about life. If it was as simple as deciding to be happy, things would be so much easier. It's a process, but you can go through it and get to the other side.

If you ever need someone to talk to, please send me a message. I am always more than willing to talk and help in any way I can.

 

[running4life]

I hope my words will offer you some encouragement here...

First, let me explain my situation. I have CF and a decent lung infection. One year ago, I had my first course of IV antibiotics and my lung function has never been the same. I have CFRD as well. I struggle with significant depression and anxiety so I understand what you are going through. I am 25, college educated, an ordained minister, and a certified personal trainer. What does all this mean? I nanny a few days a week, thats what it means. Guess what? I'm not giving up. This is God's plan for me.

My depression has crippled me the past two weeks, but I had to keep fighting and SO DO YOU. You are not a victim of your circumstances. They are perfectly ordained by God. You can overcome them and I believe you will. Take control of your health. Don't give up now and whatever you do, don't stop fighting. I have not had an easy life, but that by no means makes it a bad life to live. I have been sexually abused, an alcoholic mother, an abusive stepfather, lost everything I have owned in hurricane Katrina, been completely broke, etc. We are MORE than conquerors through Christ. You are not an accident and you have purpose. Seek it out. This isn't how your story ends. CF is a part of the wonderful, beautiful, gifted person that you are. You are NOT CF, you have it.

Take care of yourself. Go to counseling. I see a counselor once a week and more if I need it. I am on depression medication. I also workout every single day, eat a very healthy clean diet, surround myself with people who love me, involved in volunteer activities, walk my dog, clean my house, nanny a few days a week. I could give up, sit on my butt and let this disease overtake me, but I don't. And you don't have to either. You CAN do this. Do what you need to do to take care of yourself. Let go of shame and admit you are helpless over certain things, but that doesn't mean you have to let them overtake you. Do your part in your health. I believe in you.

 

[azdesertrat]

I am recovering from yet another CF induced 'incident'.
I live in AZ but am in ID visiting family on an extended stay. I contracted several blood-borne bacteria that caused renal failure & almost killed me.
My Wife was forced to fly up to be with me because the docs weren't so sure I was going to make it. For whatever reason, I did.
Yes, you will get down with this damn disease. I would have loved to have had a fun, UNEVENTFUL visit with family.
Of course, with CF you must always hope for the best but prepare for the worst.
My Dear, all you can do is look at every little mishap as a 'Speedbump'.
Keeping that attitude has helped me quite a bit through my life. I hope it will help you too.
May God bless & be with you, 'Pat'.