Just when I think I have a handle on the hub's MS, it smacks me upside the head and I get to go over the anger and sadness all over again. I still grieve who he was before. I am resentful and angry about all the things MS has taken from not only him but also us. It's been over 4 years since his DX. I love my husband and will until the end of our days. I know acceptance is different for everyone. Does acceptance ever come?
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I accepted this miserable diagnosis quickly but will likely never get over feeling cheated and bitter about it.
I'm sure someone with a delightfully sunny disposition will write in that MS is what you make of it but I'm not buying what they are selling.
He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
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I have been a member of this board for a number of years. To me, people with "good hope" tend to do better than those without hope. I stay informed of current MS research and see new breakthroughs every month. One of these days there will be a breakthrough that stops disease progression. Another breakthrough may repair for existing damage. Greater than science is my belief in Jesus Christ. My faith provides comfort, peace, and joy even in the storms of life. I understand not everyone is a believer and that is fine. For me, I would rather be wrong about Jesus than be right on everything else.
That being said, MS is still hard on both patient and caregiver. I often believe my wife (caregiver) has it harder than I do. My wife could have started this thread. After years, she still struggles and hurts when she sees me having a hard time. My wife wants life to be fair. She doesn't like my physical and mental challenges. She doesn't think I deserve being disabled, having chronic pain or any of this mess. She wants more out of life for me, and us, than the hand I have been dealt. The notion of fairness ended early in my life, so I do not have that expectation. I think this also helps me deal with the day to day MS issues. This changes when I see her. My wife is the most amazing woman and she deserves a health husband and a full life. That's something I am currently not capable of providing. So while I do pretty well with my own struggles, hers are harder for me to face.
My wife recently had lunch with a good friend that has a special needs child. The friend admitted the first 15-years of his life was extremely difficult, but the past few years have been better. The situation has not improved, but her level of acceptance has. Some people never make it to acceptance, but you can actively work at it. A good counselor can often help you with the five stages of grief (Kubler-Ross model), but that's still no guarantee. One of the difficulties with MS is you continue to experience "new loss" with disease progression. Time does a decent job of healing episodic trauma, but is less useful for prolonged, chronic trauma.
So like you, we do the best we can with each day. We try to count our blessings and make the most of our moments. The reality is we only have one chance at life so we need to do what we can, while we can. We don't have another life to lead, so we need to do our best with this one. I wish you and yours well.Comment
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For me acceptance was not an issue. I knew there was something very wrong long before my DX so it was just nice to have a name for it and know my enemy.Originally posted by hotdiggitydog View Post
Anger and bitterness on the other hand never completely go away for me. I do try to make the best of it since I really have no other choice but it is still a constant frustration.Comment
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Well said!Originally posted by Dale76 View Post
He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
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Thank you all for your replies. Jules, your initial response made me laugh. Marco, your post was insightful like always. Thank you for sharing your family's struggles. It's nice to know that I am not alone in my difficulties.Comment
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Hi Hot Diggity from Marco's wife
This is Marco's wife
Hot Diggity Dog,
Marco asked me "Honey, are you Hot Diggity Dog?" and your post was amazingly similar to our situation. We understand!!!
It helps that Marco's attitude is amazing. But sometimes it's difficult for me to be grateful in all circumstances and we've learned not to say it can't get any worse. And it's difficult for me not to compare our life with others, who seem to have a better lot in life. But, we:
1. Try not to compare
2. Work to renew our minds. In Romans Chapter 12, it says that we need to renew our minds daily.
3. Try to be loving. "They" say that there are only 2 emotions: love and fear. Sometimes it's really difficult, but we're tying to live out of love.
Often, we fall short, but we are trying. We are also encouraged when we are reminded that we are not alone. We know that God has good plans for us and for you. You are not alone and we are rooting for you.Comment
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Marco and wonderful wife-
Again, than you for taking the time to reply. Life in itself is difficult enough without dealing with a progressive disease.
When we started this MS journey, I never thought about the emotional roller coaster ride that it would be. It didn't take me long to realize that it would not be the extra responsibilities that would be difficult, but the emotions. I try to take it one day at a time. Much more than that just overwhelms me.
Your comment about love and fear made me stop and think a bit. I hope the next time I have a difficult day I can remember it and make sure I put it to use. Thanks for reaching out and sharing your story. I wish you all the best!Comment
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