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Depression and CF

Mike

New member
Hi everyone, let me start off by saying that this is a first for me. I haven't spoken with many other people with CF, nor have I joined any chat forums to discuss my situation. I have a friend with an illness that recommended trying out a CF support website, so I'm hoping that sharing some of my life will feel good to get out. I'm a 25 year old male living with Cystic Fibrosis. Throughout my childhood I was hospitalized 1-2 times a year for 2 week stays do to the illness. Growing up as a child was hard for me, my social skills arent as good as they could be. In school I always felt like an outcast and didn't make many friend. Up until the age of 12 I was fairly sick with the disease, but thankfully my lung capacity and PFT's started getting better instead of worse. Hospital visits were cut down to about every 4-5 years. By age 17 I really started to get depressed, never really feeling like I fit in with anyone. At that point I really didn't care much about my life and I reverted to drug use. As ridiculous as it seems because I have CF, I started smoking pot very heavily. Pot lead to mild drinking and LSD use as well. This went on for almost 2 years. I would be high from morning till night, never coming home (as my parents would not have accepted this.) It wasn't until around 19 when my parents had hard evidence of my drug us that they confronted me about it. I broke down and cried explaining that I was looking at it as a form of slow suicide because I knew it would eventually kill me. I went into drug counseling and was able to completely clean up my act. One thing that helped my decision to quit was the girl I was seeing at the time. I had planned on spending my life with her, and knew my time would be cut short if I had kept up that lifestyle. Her and I ended up together for 5 years (age 18-23.) I broke off my relationship with her because I felt I needed some kind of change in life and I was not happy with myself. I had never really gotten to know the person that I am. I ended up leaving this person for someone that had a 2 year old daughter. At the time it seemed right for me, my emotions quickly became attached to this new person, a person that I had actually been working with as well. Her and I ended up moving in together, even though something always seemed to be wrong with my decision. This person turned into a nightmare, someone I had wished I never met. She resented many things about me and treated me horrible. I over compensated at the time because I knew she had a lot of bad things happen to her throughout her life, so I just thought "well, she's treating me like that because of her past." This relationship was extremely unhealthy for me. One thing I have noticed is that stress and anxiety can often trigger my body into becoming ill. My immune system lowers and the pseudomonas begins to inflare. Within 1 year of being in a relationship with this person I was hospitalized twice, which I haden't been in 4 years. After the second hospitalization I started realizing that something wasn't right, but still did nothing about it. In December of 2002 my doctor had told me that because of the amount my lung capacity has dropped in the past year, she wanted me to go on the list for a double lung transplant. That news hit me like a ton of bricks. Everything seemed gray at the time. I fell into a depression, which I think is understandable. I had been fairly healthy for so many years, and to have this come about took me by surprise. Instead of support from the person I was with I got grief because I was moody and didn't help with her problems as much. By April of this year I ended the relationship, moved out and am now living in an apartment that I built on my parents property. My parents have been tremendous support for me. I have now been single for about 8 months and find myself slowly slipping back into my past. My depression is coming back, my dealing with all of the past years events has been extremely difficult. I have nobody around that can truly understand what I'm going through, that makes it hard to talk with friends and family. I am someone that enjoys being in a relationship and sharing myself with someone, being alone is getting hard. Especially now because of my added health issues with needing a transplant, I fear that I will die alone. It's hard meeting girls now and having to explain my situation, I feel like I have too much baggage. Sadly for me, being in a relationship fill a void in my life, that void is beggining to eat away at me. I know I need to start dealing with things better, but I don't know how. There are days when it concerns me for some of the things I do now, but other days I really don't care what happens to me. If there is anyone out there that would be willing to discuss this further, or if anyone has questions, please post a reply. Feel free to ask anything, I am trying to open up my horizons and communicate on a level that I was not able to years ago. Thanks for listening.
 

anonymous

New member
Hi Mike,My name is Amanda. Although my background isn't quiet the smae I do know about depression and feelign alone and needing a void to be filled. Growing up I was sick alot too. I started having to go to the hospital by age 8 at least 2 a year for a 2 week visit. As I grew older hospitalizations became more frequent. I too felt like an outcast at school. I also felt as though people at school treated me differently because of my CF. Some it felt as thought they didn' want to be near me for fear they could catch somethign even though I told them they couldn't. In elementary school I went to school with IVs and a few kids were very rude about it, as kids can be. Then in high school things didn't get any better. I was on home ivs alot or in the hospital 4-5 times a year. I had some friends but not very good ones. Like you I didn't have very good communication skills and so I didn't go out and find better friends or at least make the ones I had treat me better. Although they knew I had CF and what it was they acted like I was perfectly fine and would question why I had been gone from school when I was sick instead of checking on me like I did for them. I was used by them alot I think because they were my only friends and I let them use me for fear I would loss them and be alone. Also my father didn't help things any either. He was verbally abusive and an alcoholic. So growing up at that house was very hard. Not only did life at my house was hard but outside of it so I didn't ahve a "safe" place really. For me stress and depression also triggers me getting sick. Its like a never ending cycle it seemed. Depression causes me to get sick being sick causes me to be depressed. But once I graduated and didn't go back to school I slowly broke out of my depression, only by the help of new friends finding me. Like I said I was very shy and had hardly any communication skills so they found me. Depression is a hard thing to get away from. Although I am much better now I still get depressed and at times I have no idea why. But it willg et better, its just trying to get there is what is hard. It means nothing to you know because you are depressed but the best advice is really trying to be happy at what is there. I would be more than happy to talk to you more if you want. I also have another site if you would like to visit it. There are alot of good hearted people there as well who have been in your shoes too. You can e-mail me at akcooper_01@hotmail.com and visit this other CF site at http://groups.msn.com/CysticFibrosis2chat/homepage<u>Text</u> I hope that things work out for the best for you. Its hard to see it now but thigns can and will get better I know from experience.
 

anonymous

New member
Mike, I think you are on the right path my friend.. You seem to possess enough self awareness to know what isn't good for you (even if you had to learn it the hard way) i.e., dumping the unsupportive girlfriend, seeking guidance from others in your shoes... Depression and CF are very common... I mean why wouldn't it be? At a glance, things appear pretty bleak (no cure) and add to that the notion of confronting your own mortality (transplant) and you've got a recipe for depression. Many Cf'ers seek counseling and still others require meds to cope... so you're not alone. I encourage you to check out this site: http://groups.msn.com/CysticFibrosis2chat I think you'll find the kind of support you seek there.... I know I have. This site has a chat function in addition to a message board. In addition to meeting other Cf'ers (who run the range of being very healthy to others who are transplant prospects also), you'll meet parents, siblings, spouses and friends of those who CF. Take care man, hope to see you there <img src="i/expressions/face-icon-small-cool.gif" border="0">-Richaka 'sleepwalk' at site I mentioned[L=]http://groups.msn.com/CysticFibrosis2chat[/L]
 

anonymous

New member
Mike, I can in no way understand what you are going through because I am the parent of a CF child and do not have CF myself. I want to applaude you for your honesty and let you know that you are on the right road to getting better. Admitting and talking about things is always a good step in the right direction. Your email has also made me aware of what my child may go through in years to come. Thank you for sharing your story and giving me some insight as to what I need to look for so that I can help her. Although it is in no way the same, I have had many bad times dealing with the fact that our daughter has CF. I went into counseling to talk things through and it was very helpful. It is something to consider. I also found a great friend in another CF parent who lives far away. We email regularly and this has been a great support system. Perhaps you can find a connection such as this (I found mine through a parenting magazine).Take care of yourself and keep your spirits up.p.s. You are lucky to have supportive parents. Embrace it. I am sure they are concerned about you and will do anything they can to see you through this.
 

RadChevy

New member
Mike, I can relate to what you are saying on many aspects. When you have CF, there is an instant feeling of "aloneness". The human mind is great at helping us deal with lifes pressures and stresses. Some people deal with it in denial, others turn to drugs or alcohol. Others don't take care of themselves, others decide to do the complete opposite and do everything on the earth to stay fit and healthy.Despite your past dealings with drugs, your health overtime would decline, as most CFers do over time. But how do we deal with that? Is anyone prepared for that? Is there a book that tells CFers all the steps they will go through and how they should deal with it? No, because we are each so different. Our families, friends, outside supports, our ambitions, our interests and our health all play a role in how we deal with this. Sounds like you have made the right choice in moving back home near your parents. When you are waiting for a lung transplant, you need that support and trusted people surrounding you. Transplant is full of "unknowns". Good unknowns and bad unknowns.Are you actually listed for tx? Do you have a good CF doctor you feel comfortable with? Talk to them about your oncoming depression. Depression with chronic illness is very common. Being depressed before getting a transplant is even more common and can almost be labeled as "expected". I think anyone who is facing such a surgery and future has every right to be depressed and apprehensive. Tell the Tx team and they can help. They may refer you to talk to someone who deals with chronic illness, or CF, or transplant issues. They may feel you need some medication for the depression. Many people are on anti depressants, and they are not facing what you are facing. Life is so short, it is not worth that time being depressed, if you don't have to be and there is a way not to be depressed. When our brains are sick (depression) take a med just like any other body part we have when it becomes sick.I am post lung tx, due to CF, now just over 6 years ago. I also have a sister who has CF and she is 3 years post lung tx. I can truly say that having a sister with CF and to relate to was a blessing in many ways. We had each other to share those CF things with. But there are so many CFers out there who feel like you, and think like you an there are great ways to connect by email, IMing, chats, forums like this. You will make some great adversaries and lifetime friends. Rich mentioned CF2chat, a great group. There is also a lung transplant group I started called Transplant Support- Lung, Heart/Lung, Heart. A great group of pre and post tx folks who have various lung ilnesses. On December 10th in fact we are going to have a special CF chat session. But everyone is welcome every evening for chat.Here is the site. Check the site out. I have many resources listed that might help you along the way to tx.http://groups.msn.com/TransplantSupportLungHeartLungHeartWhat center are you listed at? Do you know how long of a wait there is? Do they have an in person support group you can attend? Do they have a social worker of psychologist you can talk to? Ask your CF team if they have someone on their team you can talk with about your issues of the day.Joanne Schumluckylungsforjo@aol.com
 

Mike

New member
Amanda, Rich, Joanne, & parent of a CF child, Thank you for your support and help. Amanda, although I am glad to have found people I can relate to, I am also sorry to hear that your childhood wasn’t easy for you. With each passing day of my life I know that being negative is not going allow me to eventually find happiness. The changes just during the past year have been overwhelming, but I have tried to deal with them to the best of my ability. Yes, talking with people online and venting out some of my concerns feel good to get out, but in the end I wake up each day not feeling content. I have goals in mind to try and find a better job, possibly start college again, but I have no path to get me started. I could go on for hours with why this is difficult for me, let’s just say that I need to find peace. My work situation is extremely uncomfortable for me, as my ex works closely with me. I do have a few close friends, but they also have lives, and families of their own. There are certain days when I really feel like I would like someone to be with, to talk with, then I sit back and realize that the day will be spent alone. This hollow feeling is something I am trying to overcome. Seeking comfort with family only does so much. I don’t like having them worry an more than they already do. I would definitely like to continue this discussion, however my break is over & I must get back to work. I will talk more tonight to the rest of you. Thank you again for listening,Mike
 

anonymous

New member
Don't feel sorry for me. It's something that happened and is now in my past. I understand about not knowing where to begin. Its a struggle in itself. With you wanting to find a new job and start college and all your plans I would suggest this, Start with the job mainly because you seem unhappier there because of the situation at your job. Start by just keeping eyes and ears open to what jobs are available and if you would like to work there. Don't get a new job just to get away, do it for yourself. Take time to do things just for yourself. Don't worry about making other people happy because that puts even more stress on you. Your friends and family will be happy no matter what you do and will be happy because your happy. Yes family can only do so much but at least they are there. Its not the same I know. Althought you said your friends have their own lives and families I am sure they wouldn't mind you visiting them every once in a while. For me getting out of the house helps alot, just a change of scenery helps ease the mind some. Just giving some ideas is all. When you are sad or depressed, or for me anyway, I just have a numb mind and can't think of anything to get myself out of a slump. But saying things and giving ideas is totally different then actually being able to do them. Sometimes you just have to make yourself get off that couch and do something you know. Well anyway I noticed I am starting to ramble. If you ever want to chat my e-mail is akcooper_01@hotmail.comAmanda
 

anonymous

New member
Mike, your situation really touched me. I don't know what it's like to have CF but I know what it's like to feel totally alone. I lost 2 siblings to a rare disease and sometimes I wonder why it wasn't me. I have lived with survivors guilt my whole life. My sister sometimes feels that maybe she would not have been born at all. I was wondering if I could tell your story. I am a journalism student at the Graduate School of Journalism at Columbia University and we are able to do our master's project on anything we want. All I want to do, is to tell a story that is real and that I care about. Something I relate to. I know it sounds crazy but I think your situation and people like who have depression because of CF have such a compelling and moving story to tell. You should not have to be alone in dealing with it.-Felissafib2101@columbia.edu
 

Mike

New member
Hello Fellisa,I can't speak long, as I am currently hospitalized. We have minimul access here for patients. I would be happy to assist you, but I may need a few more days until I can write more to you. I can be contacted at "Farbeyond1978@yahoo.com" feel free to ask me any questions you may have. Thank you for reading my posting.Mike
 

anonymous

New member
I am so sorry that you have had such a rough time. I know it is difficult, I've lived with it for 35 years myself. Although it seems to be "taboo" or "unpolitically correct" to talk about religion, I feel that it is important one solution to depression. Two years ago, I lost my Dad to cancer, during which time I was hospitalized. I was hospitalized at the time, and in fact, my room was next door to my Dad's room. Fortunately, I was able to get out of the in time for the funeral. The following months, I almost lost my brother in a bicycle accident. He was in ICU for 8 weeks and because of the fear of sickness, I was prohibited to see him. The list of troubles continues, but I won't bother you with details. I started to attend a weekly Bible study and found the hope in Jesus Christ. I now realize that despite the hard times and uncertain future, I will always be taken care of. I don't know what my plan on earth is, but I know that I will live forever in Heaven because of Jesus. God never promised there would not be hard times, but He did promise he would be with you. My Dad told me before he died, "You can't always help what happens to you. You can help how you deal with it". He dealt with his cancer with such courage and bravery because he knew that he would be saved. I place my trust in God every night and ask him to do the worrying for me. It really seems to work. Even if you haven't been religious in the past, you can ask God to come into your heart. It really works and reduces the stress (key word reduces not eliminates). Good luck and God be with you. I will pray for you!
 

anonymous

New member
I can't agree more. Without Jesus in my life I would probably be gone by now. I can also tell you from experience myself, that asking God to take your worries from you does help ALOT. Believe in your heart that Jesus died for your sins and ask him to come into your life and forgive you of your sins. Not only will you go to heaven but it will also help with your emotions. Like the person before said it doesn't fix anythign compeltly but its helps tremendously. I don't know where I would be or how I would be doing if it wasn't for God in my life. I too realize its taboo to speak of religion. I am also not trying to force my beliefs on anyone. Just think about what I said. I only tell you what I have experienced.
 
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