Living with a chronic illness

As I have already mentioned, I am living with a chronic illness. I have Crohn's Disease. I had never heard of it or known anyone with it until the day I was diagnosed with it. It's crazy how many people I have met on my journey especially the nurses I have had caring for me who have revealed that they themselves also have Crohn's disease. It is an ugly, nasty, no good disease. I have been lucky, and been able to somewhat keep it in control for now. I have not required any surgeries yet, and I hope that I never have to. Remission is the goal, and I have not reached it yet, but I aspire to get there and positively hope for it each day I feel "good". Good to me is another person's "sick" day. Imagine having a stomach virus daily. This is what I deal with. Severe stomach pain, nausea, constant diarrhea, joint pain, depression, irritability, headaches, heartburn, numbness and much more. My medication makes me more susceptible to getting sick, so I am constantly having to wash my hands, sanitize, and make sure I am careful who I am around.  I've learned to live with it and to accept it. I am so very thankful for the good days. I forget sometimes what life was like before this disease. I was never really a "planner". I was a "fly by the seat of your pants" kind of girl.

One of the worst things is the feeling of letting my kids, my family and my friends down. Flares or infections can come at any time without notice. It makes it hard to make plans and keep them. Vacations, weddings, big things are at risk. Having to tell my kids I don't feel up to playing or we have to miss out on doing something fun because I don't feel good. It kills me. Gavin knew the mom before the illness, Kynlee did not. She will always just know the mom who is sick. Man, my kids are so good and accepting I am so lucky. I thank God for that. Gavin is my helper and understands what's going on. Kynlee tests my limits like any 4 year old but shes also always asks me if I'm feeling OK. Both kids ask how my infusion was when I go, they are the best.

It affects my marriage because as you can imagine I'm never really in "the mood". I'm constantly sick, not feeling good, worn down and just plain tired all the time. I'm lucky because Austin is understanding and very patient with me. I feel ugly and bloated most of the time. He makes me feel good about myself and I am so grateful and lucky to have him.

Anxiety and depression. And this is a BIG one. I live in constant fear that anything I eat or drink will upset my system. I am constantly worried about being around someone who is sick or has been sick because if I get sick, it's 10 times worse for me than normal people. I am constantly having bathroom anxiety, and will not go if someone else is in the public restroom. I am always looking for the restroom right when I walk in somewhere. I have anxiety that people are constantly thinking, "my god does she ever feel good" or "she complains an awful lot" or "now what's wrong with her". I really don't mean to, I swear. I don't like going places or being around big crowds of people when all my life I have never been like this. I am constantly worried others are judging what I am eating or asking if I should have that. If I am feeling OK and able to eat it, then yes it's OK. I have anxiety that I am not enough as a mom, a wife, a daughter, a sister, a friend, and an employee. I always feel like I am failing and I could do better. Nothing is ever good enough. I wonder if I will ever get to live a normal life again without pain or symptoms. I often wonder will complications from this disease kill me and leave my kids without a mother. Is there something I could have done to prevent this? Why was I given this? When people ask how I am, most of the time I just say I'm OK to avoid people feeling sorry for me. The list goes on and on. I am working with myself and my family to come out of this negative place. It's hard. I have never been clinically diagnosed with depression but I know it's there. I choose to turn to my family to lift me up when I don't know exactly why I am sad or upset or hurting. There is no feeling like not being able to explain why you are hurting. Before my disease, this didn't exist.

I'm just pushing along, hoping everyone sticks in there with me. I am so beyond thankful for my group of friends and all of my family. I have an awesome support system. My parents and my sister. They are like no other. My angels.

 

-Ali