One day at a time. More like one minute at a time for me. I really need to believe this and follow it. As of late I’m finding myself wondering about my future with this MonSter of a disease. I need to stop torturing myself. All I can see in my future is nothing but this bed and this room. I don’t mean to be a Debbie downer, it’s just what’s been going through my head lately. I know the odds for people with aggressive forms of primary progressive MS. I try so hard not to dwell on what might be, but it’s very hard sometimes. I watched a documentary of Annette Funicello and my heart was broken. I know that she would not have wanted to be remembered that way. I could be way off base and maybe she wanted people to see her like that, but there was nothing in her eyes anymore and I wept for her. I am well aware that this disease is the snowflake disease and no two people are alike, but it’s still hard to watch someone’s struggle with a disease just like yours. Just like I tell people not to google their symptoms, I probably shouldn’t watch movies or documentaries about people like me. 😉 Again, I need to follow my own advice.
I’m just so over this MS thing! I just want to give it back and get a refund. 😊 It’s like, I’ve tried it I don’t like it, please take it back. In a perfect world…
Believe me, it’s not as glamorous as it seems. Now, if I had Gerard Butler fanning me and feeding me chocolate covered strawberries, that would be okay!!
The reality is not so lovely. Hubby says no design table or being out in the front until my legs stop swelling. I know he’s right, but I’m not happy about it. My mind is clear, but my body is in pain. This is when it sucks to be me. Mentally I can do anything, but when the body won’t cooperate it’s no bueno! 😦 There are only so many movies to watch and books to read. I’ve heard it said that only boring people are bored. SORRY, but that is bullshit! My boredom comes from my MS and being trapped in my own body. In my mind I can get up and go, my body says nope!
It’s during these times when I have to find my inner strength so I don’t fall into a deep depression. Finding it sometimes is a hard thing to do. Eventually, it shows up…
So, here I am in bed, with my MAC [only link to the outside world], my TV, and 3 of my fur-babies lying all over me. I guess I should be happy…they are actually sharing THEIR bed with me! 😛
So, it’s Monday. Here I sit wondering what to do. Hubby at work, kids at school, mommy home.
Sometimes the hubby will call from work and ask me what I am doing. My response, me being me, is always something a tad sarcastic. Something along the lines of, “Oh, just got back from running a marathon and I’m spent!” I will admit, sometimes it bothers me. I mean really, I can’t drive anywhere or do much, so what does he think I’m doing. 😛 I know he means well, but…
Then there’s the fact I have a great hubby and children. I know this, but when they act like martyrs, it gets to pissing me off. I know they all help me, I know I’m crippled, please do not rub it in my face. I know how much they do with working, school, coming home, shopping, etc., but don’t throw that in my face when you get a stick up your ass’. That’s when I feel crippled. I know you all work hard and sometimes it gets to be too much and you all feel like you cannot get it all done. Let me tell you, it’s the same way I feel about my job, mommy/wife. How do you think I feel that I cannot get much of anything done? Just struggling with the dishes make me exhausted. I HATE not being able to the best mom and wife ever. If I had not gotten sick I would be the best!! My heart breaks every day. When you all make comments under your breath [chicken shit] you make me feel that much more crippled.
I guess I should be glad it’s not a daily occurrence, yet! Hopefully the sticks can be surgically removed and all can get back to normal. My body may be broken, but my mind is not. I’ll only take so much! Trust me, I know I can be hard to handle. I know I have my moments too. But I do not deserve the silent treatment or the petty games.
Ah, that felt good to get that out. It’s been burning a hole in my brain for a while now. Hmmmmm, think I’ll go run that marathon now!! 😉