No one will understand MS unless they walk, stagger, trip, fall, or tremor in our shoes. That is a fact. On the exterior, for the most part, a person with MS looks no different than a perfectly healthy individual. Due to this fact, it causes me an extreme amount of guilt. For things I can no longer do, plans that I cannot follow through with, poor memory and constantly forgetting about things, breaking things because of my tremors, and distancing myself from everyone in my life so I don't offend them by breaking plans, not returning calls, or being too depressed to leave my house. I assume some of y'all can understand this feeling of guilt and have the same distancing and wall building techniques as myself.
We can either get tired of hearing the poor advice of our loved ones and of others in our lives, or we can take the opportunity to educate them ourselves. We should keep in mind that most of these individuals are probably people who think they have critical information to help us in our everyday battle against our own bodies. Now, I'm not saying everyone is giving advice out of love, because there are those individuals who will tell you that you caused the MS on your own. I don't consider that to be advice out of love, and I wouldn't even waste my breath on a human who could be that harsh.
If we want the people around us to have accurate knowledge, we need to be open and educate everyone we come into contact with. Take every opportunity to turn the ignorance of MS and place our reality into perspective for every individual we meet.
We must inspire the younger generations. We need to find a cure. If we do not educate the people around us, we are not inspiring our young to become scientists and Dr's. Our children and grandchildren deserve a better future if they are unfortunate enough to have MS. I fight against my MS not only for myself because I am 32 years old, but I also fight for my 13 year old daughter and our future generations.
Evaporate the ignorance and myths of MS. Condensate the knowledge and realities of MS.
We all stand alone in our personal MS battles, but together in our war against MS.
I try not to listen to people that want to give me their "expert advice". They don't seem to like it much when they are preached to in the same way. Do not try to preach to me about doing better for myself if you smoke like a chimney, drink like a sailor and pay no regard to your diet.
I am SO tired of people telling me that they are sorry that I was diagnosed with Multiple Sclerosis. I smile and say Love I am NOT sorry. God Knows exactly what He's Doing, and I am SO THANKFUL FOR EVERYTHING THAT HE HAS DONE and IS doing. I have reached out to MANY all over the world about M.S.. I send love and encouragement through my messages. I let others know that the pain that is felt means He Woke you up today to feel that pain....How great that is
To stay positive cause they know someone with MS and they are doing just fine... Smh
I've recently been getting advice to "be careful" from my sister who's 20 years my senior. I used to get more of the, " Oh, I get that to, " when I mention things like memory problems, but I think it must have sunk in when I said that this problem started in my 20s. I know she means well, but she's limited in her knowledge of ms. She has no idea how much I'd prefer old age over this, after all most people who die in old age don't go the way some progressive MSers do. I used to watch the Jerry Lewis telethon with my father every year. I thought the scariest thing about it was being bed ridden and aspirating on one's own saliva. In the end, all I really want is a hug, no words, just a hug because I'm scared shitless some days. ((HUGS))