Bad title, I know. And yes, my blog is almost late. My sister’s getting married tomorrow…well actually, today…and I’ve had things to do all week to prepare for that. I meant to write on Monday, then Tuesday…and well you get the idea.
I’m supposed to be writing about invisible illness. I’ve thrown around ideas in my head for a month now on how to approach this subject as it pertains to me. You see, my husband is the one in our family who has the invisible illnesses, yes illnessES – many illnesses. I didn’t know if I was going to describe what the past 5 years have been like since his diagnosis, or what happens on a daily basis. I even thought at some point that this blog should be in his words and not mine, since I am his wife.
However, I also am living with his invisible illnesses. So me writing IS relevant.
I may ramble because it’s late and I’m really tired and still have things to do to get ready for tomorrow, but I wanted to get this done…so bear with me please.
My husband and I met in 1995 I think it was. We married in 2001. He was diagnosed in 2004, but had been sick since 2000 at least. So, when we married, I knew he was sick. I didn’t know the toll it would have on everything that we do and I didn’t know the things we’d be giving up because of his illness, but I knew when we married that he was sick and that I was here for the long haul.
I did hear from some people that I should leave when he got the diagnosis. I don’t hold any bad feelings towards these people, they just want me to not have a stressful life. But hearing that did hurt. I could have very well been the one who is sick…would these same people expect my husband to then leave me? How horrible would he be if he left me? People don’t think.
My husband has Antiphospholipid Antibody Syndrome, Lupus, Sticky Platelet Syndrome, Connective Tissue Disorder, Sjogren’s, Raynauds, Vertigo and some others that I can’t think of. He’s on about 10 medications…maybe not quite that many, but close. He’s depressed and has developed OCD since his diagnosis. Actually, he probably had a touch of OCD, but it’s magnified now. (for his full story you can download the APSFA‘s newsletter, “Antiphospho….what?” His story is on page 9 http://www.apsfa.org/docs/APSFAVol9SprSum2008.pdf)
He lost his job of over 10 years, and has gone through 3 jobs since then until he finally filed for and was granted disability. Let me tell you, that was the best thing he’s ever done. It’s a HUGE stress off of me now that we have steady money coming in.
Of course, I am now the main bread winner. I have a hard time not resenting him at times because I come home to the same dirty house I left, but there are days he doesn’t have the energy to get up and clean. Deep down inside, I know that…but sometimes I am just as tired as him and don’t want to deal with it either. This is one of our constant struggles. One of many lately.
My husband has memory issues. He doesn’t remember what he had for breakfast or if he even ate. He doesn’t remember seeing syndicated shows, so every show is new to him…how cool is that to never have to groan over a rerun you’ve seen a million times?? Not cool, but you know… He forgets appointments, to make phone calls, and I am constantly making him lists. It is sometimes annoying, but I know he needs this help.
See, I complain, or get annoyed by these things – living with them on a daily basis. But when I talk to someone else, I am so forgiving. I explain that he can’t help it, it’s part of the diseases and it’s something that we struggle with, but we’re managing. Then in our home and lives, I get SO frustrated when he doesn’t remember. Sometimes it makes me feel like I am going through this marriage alone. I have to remember the important and not important things…so on top of the normal money, work, home stuff I have all of his stuff to remember too. It’s draining.
So back to this concept of the invisible illness. My husband doesn’t have sores on his face, he doesn’t walk with a limp or need a cane or wheelchair. He looks like he looked 10 years ago. You can’t see his illness when you look at him. I’ve heard, “oh, you’re husband looks really good” so.many.times. It’s irritating. He has an invisible illness people. Of course he looks ok.
But it’s anything but invisible to us.
He may look ok, but he’s had 14 TIAs. He gets bloody noses that may or may not stop because he’s on blood thinners. He’s called me on the phone barely able to talk because he’s gotten so worked up that he’s stuttering. He has breakdowns where he just cries and doesn’t know why. Sometimes his eyes get blurry and he can barely see. His bones are for shit and that will probably effect him one day.
I sat at work one day sure he was having a stroke in the hospital hallway waiting for his blood draw and felt so helpless that I didn’t know what to do. I’ve driving home in tears because he’s called me with an issue. I’ve talked him through a TIA that he had at work and they wouldn’t let him leave for the night. I finally told him to quit his job and we’d work it all out.
I could go on and on.
I’ve had the “we’re not planning on having children at this time” talk with people so many times it doesn’t even upset me anymore. And I love it when people try to talk me out of this decision. Geez, I don’t want to have a baby/child who may have the same issues as my husband. One is enough, thank you.
Honestly, if I sit and think of everything I have no clue how we’ve gotten through it all and are still standing on the other side.
This week is to bring awareness to invisible illnesses and to help people cope with them and live with them.
I personally have an “it is what it is” attitude. This is the hand we were dealt, now we need to play the cards. We don’t get a do-over in this lifetime, so we might as well make the very best of it all while we’re here.
I guess I just think we’ve gotten through all of this so far and it all seemed impossible at the time, but look…we’re ok. So we can get through anything.
Surround yourself with supportive people who love you. Figure out who your friends are and hold them dear to your heart. Try to rid your life of excess drama. And do as much as you can do without overdoing it. The people who love you *will* understand. And the ones who don’t…eh, it will be their loss in the long run.
I don’t know if this was the type of blog that is typical for this event. But it is what it is.