Today’s post titled: Just getting Real with Ya’ll, Sometimes a Girl’s Gotta Vent. Yep, that ugly picture is of me 1 minute after I just got a call from my mother in law tonight saying my husband ( aka @ConsumerKing) was curled up in a ball in pain at her house. I have been struggling for a really long time about whether I should post personal stuff on my blog. I know I shared about our flood but this kind of thing is just different for me. I don’t have the time to start another family blog and I think it’s time I start letting you guys in. I have so many emotions and feelings right now that I am even having a hard time writing this post.
For those of you who don’t know, my husband has a degenerative disease called Ankylosing Spondylitis. When I go to conferences, I hear people say Melissa, I don’t know how you do it. You work a full time job, have 3 blogs and your a caregiver. I usually just smile and say well you just gotta do what you gotta do. I am the type of person who feel’s like they can’t let anyone down and I am afraid to show that I need any help. Im afraid if I cry in front of someone or my family in my own mind I feel like i’m some how a failure. I walk away smiling but sometimes, (mostly recently) I am sitting behind that computer screen just bawling.
The last 3 months have been the worst. Daniel has gotten worse and his meds aren’t helping like they used to. One of the meds that he takes for shooting pains in his legs have really bad side affects on him. Some days we stay home and don’t go out because I feel embarrassed because he’s slurring his words and can’t even hold his eyes open. People see someone so young like him and automatically think druggie or alcoholic. How horrible is that, that I feel like that. I feel like i’m in a battle with myself with my own emotions between feeling what’s normal and feeling bad that I feel that way. Am I making any sense? Some days I can’t even look at my Facebook or answer the phone. My friends and family are so sweet but even just reading there kind words sets off water works. Like today I refused to read my updates while at the hospital because I didn’t want to cry in front of my father in law. So I just waited till I could go home and read them in quiet.
Daniel refuses to let me quit traveling. He says we can’t let this disease beat us. He also says its my stress reliever , when I’m away I don’t feel like I have to run around the house 90 miles an hour till I completely pass out. I still feel guilty but once I leave he is right, seeing my friends if only for a moment I forget what’s going on and it gives me a refresher so that I am ready to go home and hit it hard again.
One of the hardest thing for me is keeping friends. At least ones that are local. With this disease and our busy schedule we don’t get to do things with people that often and when we do people get tired of last minute cancellations so sometimes I think they just quit asking. It’s totally understandable but it’s not something we can help because we never know when a bad day will come. I feel like I have more online friends because I know I can never really let them down.
I have even seen myself regress online a little bit as well. I can’t handle anymore negativity or drama in my life so I have even stopped logging into Skype groups and participating in Facebook groups less and less. Even when I talk to family, I find myself just wanting to hang up the phone when they start griping and complaining. I feel like I’m gaining patience for this disease but losing patience for the world and I hate that.
I’m going to stop for now as I could go on and on. Most of this I have finished writing while sitting here in the ER to keep my mind off of Daniel screaming in pain in bed across from me. (Update, they have admitted Daniel to the Hospital to keep an eye on his liver. They say Renal failure but don’t want to scare us because it could be due to just dehydration. I’ll keep you informed)
Two shining moments tonight though: A lady came to me in the ER and said I am praying for you. I have no idea who she was but I thought how sweet of her to take time out to say that when she’s in here with her own family. Also Daniel did have a moment to crack a funny, he said ” Honey if menstrual cramps are this bad I am so sorry” lol! What’s even funnier is I think he jinxed me because guess who came to visit today? YEP!