At 6:20AM this morning I was waking up dogs, kids and husband, preparing them for the day. Little did I know at the time that it clearly was not the usual 7:30AM, and my body wasn't in it to win it.....lol. What made me slow down was I caught a glimpse of the clock on the stove. 6:45AM, I remember thinking " Did the electricity go out last night?" So funny how your brain jumps to the craziest explanations, not the most normal one. I was up over an hour early this morning. I woke up full of aches and pains, I just couldn't sleep anymore. I was hacking up a lung, and my backside was throbbing. Let me explain. Every time I go on Cipro , my body puts up a fight. For the first two days I have aches and pains, vomiting, and my kidneys throb. The first time I experienced this, I thought I was dying. No seriously, I had the shakes, I hurt so bad, and the nausea was the worse. I remember thinking that I was allergic to Cipro. Come to find out from several fellow cysters that this can be a normal reaction. Either you do well on it, or your body fights the healing process. Of course, you all know I am a fighter....lol. So Cipro and me do not agree, ever! But because of my years of infections, my body only has so many drugs that it is not resistant to. I managed to get the clothes ready for the kids, lunches packed, including hot chicken noodle soup, and my morning dose of drugs, along with gravol so they stay in. I lay down again with my morning coffee, and vow to let David and the kids sleep in an extra 5 minutes to make up for the false run. I totally get why parents get up at least 1/2 hour before their families do......it is so peaceful. So liberating, so...............who the heck am I fooling, I would take the extra 1/2 hr sleep any day......lol. I am awake and thinking of my throbbing backside( which I will admit is my most hateful pain besides bowel spasms. It is a pain that is deep inside your back. Heat doesn't help, cool irritates it, you wait for the Motrin to kick in, all the while swallow the hateful spit that sneaks up your throat , threatening a run to the toilet. ) I can handle vomiting, after all I am basically a pro at it. I make vomiting an art. Over the years of bowel blockages I pretty much mastered it. I could vomit, get washed up and flush before anyone even knew what happened. My husband used to use my butt as a dart board for almost 1/2 year when gravol pills and suppositories didn't do the trick. At one time I was on Stemital( anti nausant for cancer patients ) and injectable gravol. Anyone who has had gravol , know that it stings like a son of a pup. There is no easy way to inject it, believe me, we have tried every way....lol . Did you know it can take the body over 2 weeks to totally absorb all gravol IM( injectable) so literally my arse looked like the sand dunes of the Sahara......lol. I can laugh now, but at the time I was ready to take the gravol needle and stab it into my hubbies temple. Don't get me wrong, I love my husband, but that stupid little grin he used to have every time he had that needle in his hand was just wrong.
So I have had many hospitalizations as both a patient and as a patients mother. Both scenarios suck. Being sick and in the hospital away from your family bites the biscuit. But being generally healthy and in the hospital watching your child suffer is the worse! No words describes what you feel. But here I go: Defeat, guilt, hatred, anguish, sympathy,patience, impatience ,hurt, compassion ,frustration ,trapped, relief,concern ,oh and the list goes on and on. You feel so many things both good and bad. You hate some of the feelings you have, and embrace some of the others.
I often write about the good and bad of cf. Well the bad , most would think would be very apparent, but what most don't know is the worst thing about cf is the guilt! The guilt of not being able to heal your child. The guilt of passing on this disease, the guilt of not being able to protect them from their hurt, the guilt of being so strict with treatments, the guilt of your child not having a normal childhood, the guilt of more needles, the guilt of so much. The guilt at times can destroy who you are as a person. It can eat you up.
I often have guilt feelings when I am sick. It is not fair that my children suffer because of my illness. It is not fair that my husband has to be both mom and dad at times. It is not fair that my family suffers from anything to do with cf. The guilt of it all can eat me up. It bubbles, and froths, and breaks your heart. I totally understand when people say guilt is a horrible thing put forth from the devil. It has a way of weaving itself into fathoms of your life. I struggle everyday with the guilt. I have to remind myself that I am doing the best I can. I need help, I need support, my family needs a break. I have to remind myself that I have no control over my illness, but I do have control over how I react to it. There are days I sit and sulk! People ask me "How do you do it?" Really.....really? They are my kids and family, I do it because I have too! DO I WANT TO? NO,NO,NO,NO,NO!!!! I hate, I mean emotionally and physically hate that I have to do it! I HATE IT! I hate everything about cystic fibrosis! I HATE THIS DISEASE! I hate that last night my son came to me with tears in his eyes and said he was so afraid of losing me? Does that seem fair? Does that seem right? My 9 year old son is afraid of growing up without his mom. That is not fair, and I hate it!My daughter seems to embrace my sickness. I think because she has a first person understanding of it. My son and husband really don't get it sometimes. I wonder sometimes if it is the male gene. There are times when I am puking and been in bed all day and my husband will ask, what's for dinner. Or will say I am going uptown, and he won't be back for hours. I know it is his way of feeling normal, but it truly sucks. I want to be cared for, I want to be nurtured, I want to have soup served to me in bed. The same way I serve them when they are sick. My husband and son expect me to be superwoman, and I see the disappointment in their eyes when I can't. I have found myself blowing up at them stating " Let me wipe the vomit off my cheek, and make you dinner?" I find myself yelling at my husband , reminding him how selfish he can be. I find myself being resentful to him for wanting a healthy wife, because I am truly not sure if I will ever be able to give that to him. I hate that my son often mimics his demands, because he is just doing what he sees. Is it fair to be mad at my husband? Is it too much to ask for him to take care of the kids without a eye roll? Now it sounds like I am making him out to be a ass, but I have to remind myself that he truly didn't sign up for this. He married a energetic, vivacious women. A woman that let nothing stop her. He married a woman you never gave up, and who was active and happy. He married a woman who could multi task. Now he has half that woman. Dave has just lost his job two weeks ago, and the stress of things is crazy. We are putting our house on Secord up for sale, he is looking for a job, the stress of not providing an income is killing him. Every time the bank account goes into overdraft, I see his hope dwindle away.Every time we pay over $50for a drug for me, I see the frustration in his eyes. Remarking to me how expensive a drug is, is like saying" How dare you get sick, can\t you just stay healthy?" I see him struggle with so many things. It is not fair that he can't be a regular husband and father . He should be able to work and enjoy his family. My fear is often losing him to a heart attack, and then we will be alone. I know a part of him wants to run away......far far away. Any person would want to run. Who wants a sick kid and wife? I think it is his guilt that keeps him around sometimes, but not without its price. I think our love struggles so much with this disease. I think our marriage just floats at times. I look at other marriages at times and feel envy! I often think" You're getting a divorce, why ? Because you can't agree on money?" Really it seem so trivial. Try throwing in sickness, pain and medial bills in there and see how things work for you. I can't remember the last time Dave and I went away together, or went on a date night. I can't remember the last time we got to work on our marriage. I honestly can't remember when were last a couple. It is not fair that my husband has to be everything to everyone. It is not fair! It is not fair that my children have to care for me at times. It is not fair! It is not fair that we are cheated of so many things. I am cheated of hearing my child cough, and not thinking the worse! We are cheated of being spontaneous, and just packing things up and going somewhere on a whim. We are cheated of normal friendships. Our friends have to be patient and understanding, and know that they could take the back burner at a moments notice. We are cheated of a regular family life. You know the type when you can just pop some popcorn and watch a movie together? Nope , not us. Popcorn means enzymes. Popcorn means thought, popcorn means you may be able to take a certain medication on a full stomach, or is it an empty stomach? Everything in our life revolves around cystic fibrosis. EVERYTHING.
Simple things that people take for granted are affected by this disease. They really should put a psych warning on cf, because this disease affects the brain and your way of thinking so much.
The truth is I love my husband. I love that he can take both kids on day trip. I love the fact that he will care for them without fear. I love that he tries his best to substitute for me when I am ill. Even though the kids give him hell and often say " Mommy doesn't do it like that" It has to be defeating to him when he hears that. I love that he hasn't left us. I love that he has taken responsibility for his kids. I hate that I feel sometimes that isn't enough. I hate that when Annika gets sick he drops everything, but when I get sick he could care less. I hate that, I hate that!
I know that our marriage will struggle, and have its ups and downs. I know that we go through more than 90% of marriages. I know that the love we had when we said " I DO" will get us through. Who knows maybe one day we will renew our vows. Wouldn't that be a great adventure. Wouldn't it be nice to know he said I do , knowing EVERYTHING, sickness and in health till death do us part. I think that would be the greatest gift he could give me.....lol.
It is totally unfair to the spouse to have to care for them in sickness. Some of your reading this may think. He is your husband, he said the words in his vows. I will honestly say no one really considers those vows when they say them. NO ONE! He is only human, and has the right to feel cheated. I feel cheated! Tomorrow is another day, and another struggle. I am blessed to have medication, I am blessed to have support. I am blessed to have faith. I know it could always be worse! I know I should be totally thankful for everything I have. I know all this. I know I should not have envy, or jealousy. I am not proud of those feelings. I know I should just..........................................
Tomorrow is a new day, another day of healing physically and emotionally.
