MSS is what my wife and I jokingly refer to when I do something that she would have done. Something that she would blame on her MS. It stands for Multiple Sclerosis Spouse. We have taken this diagnosis pretty well, I think. It helps because it was somewhat of a relief because she was diagnosed with AS before and this explained why all her meds before this would only work for about a month or two and then stop. Of course, soon after the diagnosis, while receiving her medical records from down south, we found out she was actually diagnosed 4 years ago and was never told. I think she took that news just as hard as the actual diagnosis. And it didn’t help that some of the meds they gave her for AS actually causes MS. She was more upset that she could have been better off for the last 4 years than she was, She took it in stride, it effected her, but I’m not sure she’d admit that. She doesn’t like to show weakness emotionally. I know she’s afraid, I’m afraid. We’ve talked about it some and we both fear the future. Although I would think her fears aren’t all the same as mine, but I believe she has more than she’s sharing.
My fears – I joined an MS website and I like to read the section called caregiver. Technically, that’s what I am. And that scares me. I’m not exactly known for taking care of anything. I’m more known for being lazy. Now it’s possible that I’m going to be the one taking care of another adult in the future. So yeah, that scares me. It’s in the future so I have time to adjust to it, and I’m certainly not going to run. For now, I’m just the muscle. Carry things & give back rubs. I worry about her. But she can still take care of herself.
My fears – The biggest triggers of MS symptoms are heat and stress. The heat we can control by not going out in it. Some heat is out of control such as her body overheating after showers or getting dressed but there isn’t much we can do about that. She has to shower, she has to get dressed. And she’s been dealing with those symptoms for quite a while and as much as they suck, she gets through it. My biggest fear is the stress. We can’t make it financially on my salary alone. Her getting disability is on hold, we are waiting on a court date which could take up to 3 years to get. I have a court date to get child support in August. We have never seen any child support for my stepdaughter. I was working overtime for a little bit and they took away my food stamps and medicaid for the kids. It seems like every time we try something to get some extra income coming in, or to get help, we get kicked in the ass. And my ass is getting sore
My fears – A quick summary for those who don’t know our story. Cheri and her 16 year old daughter moved up here a little over a year ago. Cheri is very happy here, Skyler isn’t. And she likes to put that stress on her mom. She blames me for everything, which is fine, I’ve got broad shoulders. But she is intentionally making her stay here miserable for herself. She won’t make an effort to do anything, she is depressed. Which is understandable, except all this is adding more stress on Cheri. Cheri blames herself for turning her daughter’s world upside down. And Skyler is happy for her to take it all in and feel bad for her. All she wants to do is go back to Virginia, she doesn’t care that this is the last year she’ll have to spend with her mom before going back to college. Don’t get me wrong, she loves her mom. I have no doubts about that. But she is a typical teenager where all they think about are themselves. If we would allow it, she’d move back to Virginia tomorrow. And I’m pretty sure, we would hardly ever see her again. Cheri can’t make the trip down there anymore, and I’m sure she won’t make an effort to come up here. So all Cheri wants, is one final, good year with her daughter. But that won’t happen as long as Skyler only thinks about herself. I really don’t care if Skyler makes herself miserable, it’s her choice to do so. But Cheri doesn’t need the added stress of seeing her daughter so miserable. Her selfishness pisses me off to no end. And I know Cheri is tired of hearing me complain about her, and it kills me not to say anything to Skyler. But I keep my mouth shut, and watch Skyler walk all over her mom, disrespect her to no end, do whatever she wants. And I have to sit and watch while Cheri takes it.
My fears – That people don’t understand this disease. That because we turn down opportunities to do things doesn’t mean we don’t want to do them, that sometimes, it means she can’t do them. I read on the MS site where a lot of people lose friends and family because they just don’t understand this invisible disease. That just because she looked fine last time you saw her, doesn’t mean it’s not kicking her ass today. We don’t have to worry about friends, neither of us really have a bunch of them anyways. At least none that we hang out with.
My fears – That Cheri will have to rely on me more and more. Because I know how much she loves to do things herself. I have to make her get me for help on things because she just sometimes can’t admit that it’ll effect her body the rest of the day. She overdoes it now, I can’t imagine how bad it’ll be if she ends up having to do less. Not to mention, having to rely on me scares me. For the reasons listed in my first paragraph of my fears.
My fears – I have plenty more smaller ones that I won’t go into now. This post is long enough. But one thing I don’t fear, is my love for Cheri. We will get through all of this, now and in the future. We will continue to raise our kids and live our lives. Because one thing I know, is Cheri won’t go down without a fight. She hates feeling this way and will do anything she can to not feel that way. We will survive and live our lives doing it.