I am now in a serious and rapid progression. No one seems to know why. God knows all my medical team is racing to find an answer. In the last four months: fatigue has forced me to spend most of my days on the coach; had surgery to remove 7-9 quarter size nodules from my arms (seven incisions of 8-14 stithies each; had my lungs reduced to a 60% performance at night; started having black-outs; had allergic reactions to my Tysabri infusions; and the best of all--in 2 month's time, I have lost an… read more
I know it is terrible to say however last couple of years with the MS getting worse I've kind of argued with people that Ms is worse than cancer! At least with cancer, you know what's going to happen, how it's going to happen, probably when it's going to happen!
With MS you have no idea! You live everyday wondering if today will be the day! It used to make me very angry thinking at least with cancer you know when the end is. With MS its just a constant daily struggle to try and live your life normal. That's why I hate hearing somebody say it could be worse because for people living with MS it is worse. I have just recently kind of shocked people with the cancer/MS comparison.
CarolanaSongs~
I have often heard the same words coming from my husband~ he can't see my pain, so has no idea what I'm going through and doesn't understand why I have to rest, to say no to many invitations/outings, etc. I have to find my source of support in other people who believe that although there are others in worse condition (there always will be someone suffering more), my own pain and discomfort is still significant and still difficult for me. I can't let others, no matter how close, dictate for me what is and isn't difficult.
ban1305 ~ I have often had the same thoughts, but have expressed them to no one. At least with cancer there are treatments and the possibility of returning to normal. My pain is constant and probably for the rest of my long life. I understand.
It pisses me off! I remember when I was 13 and my father had MS. (I am 61, was diagnosed 2 years ago) and he was still trying to work. I went with him to help him when he had to go to a clients office. He fell on the stairs and I overheard some guy calling him a drunk under his breath. I wanted to kill the guy. My dad died when he was 39. People that make stupid comments like it could be worse have NEVER walked in our shoes and just show their ignorance. I "educate" them as much as possible when it happens to me.
Just wanted to add that so much is invisible. I look fine until I get up and walk funny. The constant pain, fatigue, and other symptoms are unseen. Most of us learn to cope and grasp little blessings in life. In some ways this disease makes us so appreciative for happy moments. Because it's unseen others just don't get that there is a daily struggle. My brother gave me a great expression...undelivered mail! He and I talk about the difficulty that causes. Hang in there and find trusted friends and family that "get it".
Family members can be absolutely clueless. {{{HUGS]]]