Well I have been diagnosed with MS a little over 4 months now. It was hard enough to not know what this pain and suffering was from for so many years. Now I know and along with the physical pain I get the emotional roller coaster. Because Now I need to set limits and watch what I do. My kids you know they are just kids 12 and 8. We used to just goof around and they would poke me or smack my back you know just in good playful ways. It hurt all the time when they did this but of course I thought it was just my everyday pains. It turns out it is from just sensitivity to muscles. I would hurt for days. Now I know what it is and I tell my kids please mommy hurts. I sometimes need help to walk. I am 37. My feet on fire all the time. I am so tired because I sleep about 4 hours a night and that is broken sleep. Well here comes the real problems. I don't have the energy or the urge to have sex anymore so often as I used to. I try but no matter how much I really want my husband I just can't or don't feel like it. I feel like I am depriving him and it hurts alot. He doesn't understand that it hurts me because I am 37 and can not even fathem making love when he wants to. We average about 2 times a month. He feels like I am making this up. Well he knows really I am not because I have been dealing with this pain for years and didn't know what it was. Now I do and it still doesn't make me feel any better. In fact I feel more alone now. Only because I don't understand why this is happening to me. Why can I not feel like everyone else that is 37. Why can't I exercise anymore without feeling hot and headachy and sick and tired. Why is there no cure????? Why Why Why. I don't understand. My dad just told me tonight in a joking matter that this is all I talk about. But you know if anyone would actually bother to talk to me about it then maybe I wouldn't feel the need to constantly bring it up. I feel that no one really understands. And when I am just doing everyday things all the sudden if I say oh I am hurting or when I can not do something people look at me like I am using MS as an excuse. But tell you the truth I still complained before but I had no name for it. So its like when you put a name on anything serious its like people automatically back away or make you feel that this desease is in my head. They try and say well maybe if you didn't think about the pain then it will go away. Or take an advil. Or do something to take your mind off of the pain. Well it isn't that easy. I do tend to say now to my kids that Hey kids mom doesn't feel good or we can not do this anymore. They seem to understand more than my husband does. They actually ask me how I feel each day. They see mommy in pain and really worry about me. Not that I want them to. But I know truely they want to help. I have a inhaler now too because I don't swallow sometimes correctly and my esophagus is really sensitive so it is like inflemation. So my daughter hears me gasping like I can not breathe and she immediately gets my inhaler. If I say no friends over today they understand. All I have to mention is I got my shot today. They know why I feel tired. But just getting my husband and family (dad and others to understand) Dad said he didn't mean to hurt my feelings tonight and said he will probably never live it down and I said I love you dad no matter what you do but please do some research on MS. I said until you live it you don't know. As for my husband he gets mad if the house isn't in order or I dont' feel like making love. I can get him to understand the severity of how I feel. I am not making this up and still am so weak. I just started taking my shots three months now. So it is making a difference and I tell my husband to please be patient now that we know what it is we can figure this out together what kind of Help other than shots I can use. Even phsyco therapy. But anyway I just wanted to blow off some steam as I am feeling so alone tonight. I dont have anyone I can turn to. Thanks for listening.
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