[SideNote: This is not directed towards any specific person in our group. I promise. I just needed to share my thoughts in my own space.]
Can I please just be honest and open with you all??? I wanted to write this in the group when everything started.. but was afraid of posting it and involving myself in everything that was going on.... I have made some incredible friends with all of you CF Wives. You have been there for me through some of my happiest moments and you were there for me with unwavering support during the absolute worse moment of my life when I had to let my husband go Home.
I can say from first hand experience that CF is hell. I, unfortunately, saw cystic fibrosis to it's very, very bitter end. I saw it drain the life from the man that I love the most. I was with Spencer over 3 years and every single day was a struggle for us. Yes, we had some very, very memorable moments and some incredibly happy times together, and these are times that I cherish, hold on to, and remember the most, but when I look at our relationship as a whole (and a recent dream made me realize this...) we struggled. A LOT. We struggled every minute of every day with CF. I know that some of my posts and my blogs reflected that struggle, but I often tired to stay upbeat. I always tried to put a positive spin on our situation. If I didn't I went crazy. But the reality of it was that from the moment he woke up in the morning to the moment he went to bed was filled with struggling.
Spencer didn't get the luxury of waking up on his own accord in the morning. Our daily routine was the same. He woke up to terrible fits of coughing. As he took off his bi-pap first thing and cleared out the junk in his immediate airways, he struggled to catch his breath as he fished around for his nasal canula to give him 6 liters of oxygen. He sat there with his head in his hands for a minimum of 10 minutes trying to catch his breath. His chest rising and falling with a terrifying intensity. His inhales making his ribs protrude out and his exhales being quick and sudden. He would then stumble to the bathroom, often dizzy from lack of oxygen, and the cycle would start all over again, as walking for the first time in the morning caused the junk that settled in his lungs over night to move around and cause irritation. He'd sit on the toilet coughing so hard he would throw up. He would then have to sit there for another 10 minutes just trying to catch his breath. I'd often get concerned and would have to check on him to make sure he was okay. He would then stumble to his treatment room and start an hours worth of morning treatments -- coughing fits, more throwing up, spiking fevers, and sometimes a panic attack that would strike from being so "air hungry"and so scared because he couldn't catch his breath. This would lead to him de-satting and really not being able to catch his breath. I would have to sit with him (very willingly, as it was the only way that I could help him) and hold him, comfort him, while he concentrated on his breathing and realizing that he was okay. But the time his morning treatments were over he'd have to eat, but often times would be too exhausted from doing so much coughing and heaving so he'd go take a 3 to 4 hour 'nap', and this cycle would start ALL over again. Every single breath was a struggle for Spencer, and I desperately wish that I was exaggerating.
And not only did we struggle with CF, but we dealt with severe depression, anxiety, CF related liver disease, and kidney disease, too. It all went hand in hand and it was a constant uphill battle. I wish that I could paint a more vivid picture of what a typical week was like in the Riddle house. I look back and I honestly do not know how I did it. How he did it. Every. Single. Day.
And that's where you laides came in. I was feeling at SUCH a loss. Drastic drops in PFTs, transplant talks, and tangible fear of the future that I had was getting to me in the worse of ways. I only knew one other CF wife at the time, who is now one of my best friends, but I desperately wanted to connect with others whose husbands were just as sick as mine. I didn't have anyone to talk to about this. Sadly enough, I know that a lot of you ladies can relate, understand, and were probably nodding your heads when I described a typical morning in quite a short paragraph (compared to what we went through) up above because you have lived that too. You are the only ladies I know who understand how much it SUCKS to be the wife looking over at your husband suffering so much and being so helpless. Completely unable to take that suffering away.
And then there were the moments of noncompliance with my husband. Most of the time these moments came from the depression and anxiety he had on a daily basis. It all came from feeling so defeated and not seeing a light at the end of the tunnel. Some of it even came from not at all having the ability to do something he was supposed to be doing (ie. the vest because he'd puke; exercising because his sats would drop below 90, HS and Tobi because it'd make him cough to the point of bleeding and/or puking yet again... etc). I would get so frustrated. So angry at him for not taking care of himself. I would beg and plead for him to do what he was supposed to do. I would yell at him. I would give him the silent treatment. I would tell him that I didn't know if we could work if he didn't get his act together. Mostly I would just sob, because it tore me apart at the seams to know that by not doing these things, he was cutting his life short.
Again, you are some of the only ladies that I know that have been through this exact same thing. I wasn't at all worried about posting my true thoughts about him. I knew you wouldn't judge and criticize me if I needed a place to complain about my husband and what he was (or wasn't) doing. It was a place where I wouldn't need to justify my feelings to anyone because you ladies understood my feelings. I could rant all I wanted to and none of you would think twice about it. You wouldn't shrug off my feelings of hurt, anger, and despair. Most importantly it was my safe place to go to share my frustrations with you.
Our group provided me a place to share my deepest of fears and worries. It gave me a place to connect with each and every one of you on a level that no one else could offer. There was no one else that I could share this stuff with. I was feeling so alone! And I was feeling guilty that I was feeling a certain way at a certain time. As another CF wife posted, I needed to hear the negative. I realized that what I was feeling was okay. I needed to hear the venting, the frustrations, the hospital stays, the struggles because I needed someone to relate to and connect with.
I chose to not focus and dwell on those bad days. I couldn't. I did the best I could at making our lives positive. But I did need someone there for me when I was having an awful day, as I know many of you need it as well. A lot of what you saw from me may have been negative and harsh... but it was only a fourth of our story. There was so much more.
Now that my husband is gone, I go to the group to share my experiences with those who are in similar situations that I was in. I remain a part of the group because I want to keep updated with each and every one of you. I stay there because I care about you all and I love you all. I also stay there because I know that if I am having a very rough day and I need someone to talk to - you will be there. I know that I can still count on you.
I sometimes distance myself because topics that are brought up are a little too much for me to bare at the moment. Either because we didn't get to experience it or your situation is way to close to my own. I don't post near as much as I used to, but I still read your posts.
Our husbands are at varying degrees of health... some are waiting on transplants and barely surviving, and others are thriving and living a life without stopping. That's the beauty of it. I love hearing about your accomplishments and the good things in your life and I don't think that you should feel bad about sharing them with the group. We're not only there to vent about CF and our husbands, but we're there to share in your accomplishments and things that you pride yourself in. I never, ever felt spiteful or jealous because of something positive that has been posted. It lifted my mood up to know that you're blessed enough to have those opportunities with your spouse. That your husband was not at sick as mine.
Yes there may be a lot of very sick hubbies in our group, but those of you who have husbands who are in pretty good shape.... You balance us out. You are here for us when we need you in our time of need -- and on the opposite side of that, we are here for you when you want to share something awesome. Remember that. It goes both ways.
I know that I value all of your friendships enough to not let a little bickering get between the bond that we have formed. I hope that all of you can feel the same. This too shall pass, ladies. It will, but we have to be willing to move forward, stop bringing this up, and go back to the way things were. This group has not fallen completely apart... it's just had a little stress at the seams. We're stronger and better than that. I know it.
And as my last note, I leave you with this -- Always remember to be blessed with what you have... Do try to take the time out to find positive in your situations because it will carry you through a lot. I promise. I am living proof of that.