Why do you care, seriously why? Is there a good realistic reason? I do not know them or why they ask or look at me strangely. I do not control there reactions nor do I know or care what they are or what they may have gone through. If somebody ever confronts me all I have to do is ask in my haughtiest (snotty) voice do they have any idea what ms is? I bet they do not and I do not have to tell them unless I want to, and neither do “YOU” A quick, oh no you do not, look it up on your phone and piss off usual suffices. I come at them from a prepared position of strength. I did not allow myself to be a victim or an object of derision. I know me and my capabilities and I do not have to justify myself to anybody unless I want to. That is never to say that I have to be rude, just never a victim or a target of any sort.
Never look at yourself as a victim. Yes, “YOU” have an illness, that is never a reason to let yourself be pushed aside, ignored or pitied, unless that is your plan. Stand up for yourself, assert your wishes. Do not just be a medical guinea pig, use your voice and ask why about everything. Ask questions. As much as possible know an answer before “YOU” ask. This is a strange illness that we have, nobody, know matter what letters they have after there name knows everything and how “YOU” are going to react. Accept this and expect this. Relapsing Remitting ms (RRms) is not an open and shut, yes and no illness. That is something that “YOU” and only “YOU” have to come to terms with. I will make one caveat here, Disease Modifying Therapy (DMT) does work. Not every medicine for every person, it may take a few tries to find the right one for “YOU”. I have done three, she who must be obeyed has done two. They do not work one hundred percent of the time, but she who must be obeyed has only had one or two relapses in her twenty three years of treatment. I think I have had one or two as well in my twenty years, which is not to say that things have not gone downhill, but they have done it very very slowly and that is always our aim.
Not to be cured, but to get worse as slowly as we can. That is why we exercise, sleep well, limit our stressors and get as much positivity as we can into our lives. Be they books, music, or pictures. Build a fortress of strength around yourself. Rest in it and bathe in the positivity, not all the ugly negativity in our modern lives. Develop positive habits, happy thoughts and beauty. No matter what I say this illness can be painful and embarrassing. Steal yourself against this. Find your own happiness and beauty. It only has to be for “YOU”. “YOU” my friend matter, “YOU” are worth it, “YOU” have value no matter what obstacles “YOU” may encounter, read that again. Now believe it and act like it. This is your life. ms of some sort is part of it, that cannot be changed, what can be is how “YOU” react to it. That power is yours, make it a great power, let it burn brightly and shine. So bright the galaxies dim in the night sky. This can be a very doable condition, it just takes your making a decision to start and never stop “DO”ing it.
Royce
Be so strong and make us all be proud of you. Let them sing songs of your strength and courage in the halls of Valhalla, that is a little job for you if you do not know where or what Valhalla is, find out
Did it again, bit long, sorry
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RoyceNewton
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WOW that is a lot to say. But I just shrug off people who don’t know what to say or if they try to say something and end up putting there foot in there mouth 👄 I laugh to myself. Then there are the ones who Google MS and they think they know it all. I have a sister in law that is a phlebotomist and she sees a lot of people and they Tell her that they have MS and they’ve taken this medicine and now they can walk.
Well I said to her that every medicine works differently on everyone. I also said to her I am not heard of a medicine you can take and all of a sudden you can walk. Needless to say she only talks of these miracle drugs every once in a while. And in answer to your heading what do you care what anybody says well I don’t care. Oh no I talk to long sorry about that
Wow, your sister in law sounds exactly like my mom who is - thank God - an ocean away. She thinks through Google she knows everything about MS. I only need to exercise, get the right MS drugs, drink green smoothies, and I'll be back to normal and able to walk without assistance again.
She believes an MS cure will be invented soon... I think you and I are from the same generation (I am 45), but it's not going to happen in our lifetime.
I know people just don’t know what MS and then they hear something and they think they know everything.
I have a Facebook high school friend from a very long time ago and she actually said well when you get better. I thought I have to nip this, so I said there is no cure for MS. Well for a while I didn’t hear from her. I mean really I’m not going to make any one feel good and let them think that there is a cure.
I have old friends who keep inviting me to lunch. They don't understand that trouble walking means no lunch. I've stopped answering their texts and emails. And my mom was saying we were going to meet in Milan when I go back to normal. They don't get it, and I am fortunate to have you as my new friends.
Do I care what anyone says? If I did, I would have knocked out the kid upstairs the day before yesterday. Instead, I just looked him in the eye, and said, been called worse by better.😂🤣 🤗💕
I love your ramblings as it makes me think. Yes, younger, I was always concerned about what others thought of me. Getting older, I have come to realize that you never have control over what others think of you. Never. It all boils down to the saying, that IF your intent is to please everyone, you'll end up pleasing no one, including yourself! Good post, as always!
There is no way someone like you would honestly think that. But you should get a speech therapist. When I was first diagnosed, my only issues were falling and fatigue. I explored all of the venues (including a swallowing X-Ray) and visited a speech therapist. It is covered by insurance. I didn't need it, but this would really help you. Occupational therapy is absolutely useless, but speech therapy seems to work. If you like, you could private-message me, and I can help you find a speech therapist in your area. Once you have appointments set up, you'll have no excuse not to go.
It does bother somewhat what people say but not really, if that makes any sense. They don't live in my body to know what "I" feel like on an everyday basics. I laugh and sometimes cuss them out if they think they know better then me what I go through. I love your posts, makes me think. 😊😊😊❤🌷
I was reading your post and I have said to myself if only these people who think they know what we go through could only be in our shoes for one day to see and feel what we go through maybe just maybe they i would get it.
I would never wish this disease on any one.
I’ve gone to a speech therapist but I never felt they were right for me. To tell you the truth I don’t think they ever worked with someone that had MS before.
You see I don’t have enough air to speak for a long time. I run out of air. I also have asthma and I did have the test where you eat something and they see if you are swallowing The right way with our chocking. Which I wasn’t chocking. I think the other word was aspirating but I wasn’t doing that.
The speech therapist I saw seemed very qualified and certainly experienced in MS. Don't let sandrawood's post discourage you. It is like my Tai chi post - it was, like we say in Russian, "like compresses for the dead" when my disability progressed yet my instructor was not able to adjust it to my situation, but a few people have replied that their Tai chi instructors have. One of them has MS herself. My motto is "I try everything." Also you may be able to get free transportation to the hospital. rjoneslaw told me about it.
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What would you do?
