Grrr! I know we supposed to post positive words, bit I am soooo tired of hearing---from those who try to be "encouraging" : don't be down, things could be worse, and remember I love you. " or my husband: say what you mean, and stop worrying and mumbling and it will be okay". Why don't they get that it's not going to okay! But I cry awhile and wait for the neurologist and pharmacy and Biogen to get their act together and send me the DMT. My MRI 3 weeks ago showed I have more brain damage on right side brain , so not better, only worse and no one bothers to give blood work necessary before starting the DMT. One more things people say: why don't you choose to be positive; it takes less energy"" )as if I haven't tried for the 40'years I have had MS). People act like it's my choice how I feel. Well after staying strong, being positive , praying for survival,?my neuro agrees, I am tired of coping. And it's amazing that I stayed out of mental health wards. Well, enough venting for a month!
Things you hate to hear: Grrr! I know we... - My MSAA Community
Things you hate to hear
The one that gets me think positive. Like I haven't but you know what is down the road and let me tell you it's not pretty. I remember I was going someplace and as usual I was limping and another person was limping and she said to me it will get better and I replied No it's not and she gave me a look and I said I have MS she had nothing to say, you know what I felt pretty good letting that out. Ok maybe it was harsh but I really didn't care.
And by the way you can't sleep either lol shsh lol.
@ssdw1958yep! Or "I have a fellow worker with MS-just takecyour Ms meds and you,ll willBe fine! Well good for her! I had to take disability 12 years ago, starting on 3rd DMT cause allergic to others after 6 months on each! Well some people get colds and others get pneumonia!! (That would be me). Why don't people read the whole progression of brain MS before commenting??!!
Hi, First I have to tell you that your flowers are beautiful!! I only wish my flower beds looked so good. My husband don't do shit but pull 1 weed when he walks by.
Secondly, I think I understand how u feel. If I hear "This Too Shall Pass" or "Your strong you will be fine". I will make them eat their words And yes I have told them so. And thats my family. Because I don't look sick it's like they forget unless I have a seizure or I complain. So how can I stay positive if I have to remind them about my illness.
I really do hope things get better with you and your meds. Julie
agapepilgrim well, what dare I say. You have the best friend any one could ever wish for ( apart from me that is lol) so have a good talk with Him. I will agree with you in prayer, so let me know what you are asking for and I will pray in agreement with you. It's the least I can do. Big hug, until I hear from you, blessings Jimeka 🦋 🌈 🤗 💐 🍫
Just read this. Please pray my nausea goes away!!!!
Done. Amen. Have you thought that it could be a side affect of coming off the DMT's blessings Jimeka 🙏
have you tried licorice? I know some that it works for Chemo nausea, may be worth a try....
Like I have said before if only these people could walk in my shoes for 24 hours, now listen I don't wish this disease on any one but if they could be in my shoes for 24 hours may be they would know what we are going through.
That ones a joke because I take my medicine but sometimes I wonder if it is really working. But the hard part is you have to get off of them to see if they are doing any good. Now really do you want to do that and my answer is NO.
agapepilgrim , I know we all join in cheering for your new meds to work well and soon.
I hope you keep venting here where people understand your feelings probably better than anywhere else.
I want so badly to say something helpful that would just fix everything.
That's ok just knowing what I'm going through is enough.
agapepilgrim Sometimes the best thing that you can do for yourself is look for the positive things in your life. You may want to start a Thankfulness journal and write 5 or more different things each day. I wrote in one faithfully after I was first diagnosed. I go back to it from time to time to write again, or to just read what I've written before. It helps me to step aside from my current problems.
Oh, agapepilgrim, you have had such a hard year! I have lived with MS for 30 years and I understand where you're coming from. I'm sending good thoughts your way!
agapepilgrim Hey! Scream and yell here! You don't alway have to be positive here! We are here because we DO get it. Staying positive can suck it sometimes! You are in my prayers! We love you! and if you need to cry and complain here, GO FOR IT! Read our funny positive stuff while you cry. Sometimes I do. people don't know, unless they know. No one is going to "get it"
I/we love you and have your back!
Rob
P.S if you wish to OM me or anyone, we will listen, just listen. No judging. I know I would cry right along with you.
You know I was thing one day I should write down what I have done in my life you what I have done a lot like a bucket list, NOT that I'm going to kick that bucket yet. I've done some pretty cool 😎 thing do you know of course you don't I've gone skydiving, hot air ballooning, was on a chase team for a hot air ballon, Mountain climbing, have a good husband that puts up with me, have two great sons,
ssdw1958 PLANES HAVE WHEELS FOR A REASON PEOPLE! In basic training my DI had to kick my ass of the plane! And I am guy that would free climb 1000 feet on a rock wall ropeless! You are crazier than me!
SOOOOO JEALOUS! @ssdw1958
I remember seeing the hot air balloons take off during the festival and wishing I was in one. I came so close to hang gliding, but chickened out, same with bungee jumping, but they had to close the bungee jump down because the person in front of me went...splat, yeah you know. I did do some mountain climbing sadly not for years though.
Hang in there @agapepilgrim! I understand wanting everyone who says those bleeping positive words to get it.
The way I got to go hot air ballooning was I have a friend and her husband who does it. Well on this one morning when he was going up, he didn't have a passenger and he yelled to me and asked me if I wanted to go up. He didn't have to ask me twice so I had to have someone lift me up so I could get in to the basket and go for a ride. Oh do I have to let you know it was free. So that's how I went hot air ballooning I didn't have any time to being nervous. You know it doesn't matter what we have done or are going to do what matters is that we can't have any one bother us because we have MS. OK I am done.
So lucky to know someone with a hot air balloon! And best of all...it was free! That doesn't happen every day. The next time I'm just going to do it! No fear, no worries!
ssdw1958 you have been blessed! Wow!! And backpacking the AT for 10 days was my highlight, but oh what adventures you have had. I would have gone on every one with you!! I love the outdoors and adventures! I was always a "tomboy" - no sissy stuff for me! My favorite shoes were hiking boots! That's why today I use my trekking pole and not a cane! Reminds me of the good old days. 🤣🏃🏿♀️👟🐳🐎🐪🌘
Hate camping, hate mountains until I get up there and off the floor of car..why do I live near mountains....?Wow you guys are strong people!
SOOOOO JEALOUS! @ssdw1958
I remember seeing the hot air balloons take off during the festival and wishing I was in one. I came so close to hang gliding, but chickened out, same with bungee jumping, but they had to close the bungee jump down because the person in front of me went...splat, yeah you know. I did do some mountain climbing sadly not for years though.
Hang in there @agapepilgrim! I understand wanting everyone who says those bleeping positive words to get it.
Oh to be able to rock climb again. I was known as the mantle shelf queen, but I would never jump out of an aeroplane or bungee jump! You super brave people . Everyone needs an element of danger in their personal adventures. I was so thrilled the other day, my daughter took my two grandsons to a rock climbing wall. My 3 year old scaled the wall like a pro, my daughter sent me a video , its priceless. agapepilgrim as others have said'we all love you' sending you a big 🤗 blessings Jimeka 🦋 🌈
Hi Agape, positive is great but not always possible. To be cheerful and smiley all the time would be unnatural and a little weird ! Even healthy people with stable, comfortable lives have their ups and downs - it's human nature. So why would anyone expect someone with a degenerative condition to be coping admirably at all times ?
To those closest to me ( and who should know better ! ) whose expectations of me often exceed my reality, I have been known to say 'Spend a week in my body - you'd run screaming' ! I've been struggling with extreme fatigue for a few days, falling a few times later in the day, with sheer muscle exhaustion. After an embarrassing time unable to get up off the toilet with my usual handholds and eventually having to roll off, then another fall ( even with stick ) on way back out, I suddenly felt like crying. I'm not an emotional person but it got to me. Not sure what scared me more - the sudden loss of physical ability or emotional control !
You do what you have to, whether it's a sweary rant to the air ( I find these quite therapeutic ! ) or a day curled up with your comforts, disengaging from the world for a while. I might just do both today - who says I can't multitask : )
Take care, Angela x
I have those days usually there at the end of the day. And that screaming thing yes I do that I usually call to my mom she's been gone for 25 years she doesn't answer me, but it does make me feel better. I think I am going to get one of the toilet seats that are higher up and it has bars that you can push up on. My mother in law had one years ago that would help me out. God forbid me if know one is home I'll be sleeping on the toilet. That would not be a pretty picture I think Walmart had one should have bought it. You know that saying would have should have could have.
Good night 💤😴 for now.
well sid
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