This post is to remind us to include all the silent people out there that are part of our chat room that are suffering from MS. Oftentimes, they are scared and many times they are silent and just shadow the chat room afraid of voicing their concerns and anxieties.
Please understand that we all have fears and anxieties that we deal with about our MS. We would love to hear from you. It doesn't matter if you haven't been active in the chat room for weeks or even years, you're still part of the family. Let us give you our shoulder to cry on, let us give you hugs and kisses and positive vibes to make it through those endless, somtetimes sleepless days. Let us cheer you with our stupid humor and make you feel the warm embrace that you're missing out on being active in our family.
Reach out and grab our hands and let us pull you along with the family to soothe your fears, embrace your concerns and releave your anxieties. Never forget you have a family where you are totally accepted just as you are, imperfection and all. We love you and want to include you but that is so very difficult when you stay on the sidelines and don't say a word. Speak up, shout out, let us know where you are and what your concerns are. We can't help you if we can't find you. Don't stay silent and depend on no one but yourself because you need to remember one thing. Together, we are stronger! Fancy59.🤗💖
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Fancy59
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Coloring, I've got a spot for you in our chat room for you to fit in, right beside me. You simply need to speak up and get active in the chat room. So we can pull you along and help you understand you are not alone in this fight against this ferocious enemy. My shoulder is sturdy for you to lean on. My ears are wide open to listen to your concearns. And my love is yours to use unconditionally as long as you need it. Together we are stronger. Fancy59.
Thank you for your comments Fancy59! You have shared with the group of us....those of us who speak up or those of us that may be silent. We are all at different stages of dealing with MS, but support is needed along this journey. And then life changes too from one year to the next. Your pearls of wisdom remind us/me, who have just been walking alongside not saying much, that verbal support cannot just be taken in, it also needs to help others and fill their cups too!!💕So thank you again. We all need a refresher of those wise words you offered up to us!!
Swanberg, Life is full of changes, and when you add MS on top of it, the adventure never stops. I'm so glad this simple post touched the hearts and ears of so many. It matters not if you're one of the silent ones that walk along in despair or one of the ones that walk along and talk to others like many of us in the chat room. The point is you heard and now understand you have much to share and give back to the lost and forgotten. Start out slow and as your experience and confidence grows, it will get easier to be their for others. Remember, there is no wrong way to approach a post, or help others, as long as you keep it positive, kind, and compassionate. Fancy59.
Well said, Fancy59, and thank you. I have been silent a few weeks, fighting the summer heat, fighting the crap gap and just wondering how much longer I have to keep working. I filed for disability 11 months ago, and still no decision. My employer is patient, but I know their patience will not last forever. One son lost his job suddenly; my 92 year old mom is fading, and so much negative stuff going on at the moment, that I thought I would just remain quiet for a while. I appreciate what you have said, though. I do. Thank you.
Mollyabigail, we All have junk in our trunk so to speak. Don't get me started about the disability racket that it's biased against people that truly need disability. I too, had to go through multiple hearings period the second one took the cake as my husband and I went into the disability office and we're led into a room where I had to answer a bunch of questions. When we were finished the lady doing the interview actually called me by a wrong name. I explained that was not me. That was someone else, and did we need to do the questions over. Her answer was no. The questions are the same for everyone. To that I say bull beans if you know what I mean. Not everyone's disability is the same so how can the questions be the same? Even for a simple-minded person like me that makes logical sense. That's obviously my error in thinking the government uses logic or make sense in their decisions. After I finally got approved, The judge doing the last interview decided for some reason that I had to wait an additional 8 months before disability kicked in. It had already been about a year until I got to the interview with the judge. When the judge told me I had to wait an additional 8 months it made me break down and cry. I needed the medicare to be able to afford some test I needed for my MS. Somedays you can't win for loosing.I am sorry your son has lost his job and extremely sorry that your mother is fading. I lost my mom at 92 and a 1/2. No matter how we prepare, we're never ready for them to leave us. When the walls crash down around us and it sings. We've got nowhere to turn that isn't negative. Or waiting on her very soul is when you need your friends and your family the most. Remember when you need to turn to someone I have broad shoulders to lean on as do many in the chat room. And we have ears that listen to all you need to say. Our love, compassion, and understanding is yours whenever you need it. Then when you meet someone else who was in the same spot you were play it forward and let them use your shoulders too lean on, your ears to hear there story and your compassion and love to help them through the rough spots. Remember to get there, we are stronger! Fancy59.
I was thinking about this last night. The judge ruling that you had to wait an additional 8 months is just ... unacceptable. So I said a blanket prayer for ALL of us with this d@mn disease. Yes, I swore. I hope God understands our frustrations. 🙂 So, we keep smiling and trusting Him.
Hi mollyabigail. So sorry for all you are dealing with right now. It's a lot. I wanted to share a little about applying for disability. I had applied for disability and about a year later, got the standard rejection form. I appealed and after about six months was rejected again. Before submitting my second appeal and asking for a court date, I contacted the M.S. Society and was put in touch with a disability attorney who specialized in M.S. cases. I highly recommend getting a disability lawyer to help you navigate the system. It can be very complicated and a lawyer who knows the ins and outs can really help you. Even with an attorney, it took us two more appeals after my first three to finally get approved. Also, you do not need to pay attorney fees up front. Disability lawyers only get paid if and when they win your case, and they can only charge you the standard fee set by the social security disability dept. If you have any questions, I'm here. Take care.
Thank you, my husband has been getting major problems with his MS lately and it is affecting him now I have noticed in so many ways some are subtle and others are fairly obvious.. His fatigue is getting worse so that he is needing to sleep more, his arms and legs are aching with constant tingling and he is just not taking in information the same and forgets literally everything. Thank you for your kindness.
Mathematics, does your husband have a neurologist that he sees regularly? There are medications out there that will help with the tìngling and the aching hes experiencing in his arms and legs. I'm on some, and without it, my hands would tingle constantly and get where they hurt when the tingling gets really bad.As far as his memory, if he isn't already, you need to encourage him to do games To help his memory. I invested years I go on a small notebook and I play all kind of computer games on it. Games such as solitaire, crazy jacks, scrable, matching games, Mexican Ðominos, and the list goes on and on. Since I've been playing these typee of games about 4 or 5 years ago I definitely have noticed an approvement in my cognitive skills. I am a sharper and can remember numeric lists and words much easier than I could 6 or 7 years ago. There's a lot of truth to be said in the old saying that you either use it or lose. He needs to exercise his mind as well as his body and then check with his neurologist to see what else he /she recommends to improve his overall daily life.
Advise your husband to fight this terrible invasion he's facing with MS. Fight it with every ounce of his being. Then you can help by making sure he is eating right and reassure him that you are by his side as he journies through this uncharted territory. Also encourage him to join the chat room himself. There are men that are active here as well as women, and it might do him good to talk to others journeying the same path he is period. Tell him to please take care and I look forward to talking to him in the near future. Remember together we are stronger! Fancy59.
Thank you for your kind reply. He has got a specialist nurse and he is taken amitriptyline although his nurse recommended gabapentine the doctor prescribed the other. He does get good days and bad days but he is a time served carpenter believe it or not and he enjoys fiddling with wood when he can. I will mention your ideas though. Thank you.
I want to add to this heartwarming post:If you have anything on your mind, and you want to talk about it, and possibly get answers to your questions, you can maybe drop me a message. I am but a stranger on the internet, but I am also very open and honest. Maybe too honest sometimes. I tried to complete a nursing degree, because a nurse who saw to me in A&E, where I had a simple partial seizure as she was doing my pupil reaction test, set the ball rolling for my diagnosis, and I wanted to at least pay her back in some way. I probably won't, because I've moved to a different town, but I'll always remember just how much she's done for me.
wow! This chat is truly amazing, very heartfelt, full of care warmth compassion love and true feelings. I have sat on the sidelines for a long time - quiet. Listening! You guys and gals are truly amazing! You brought tears to my eyes.
I am not one to be able to express very well in words anymore because of this demon that lives within me. But the feelings and the emotions are all here , as well as the pain.
Nmangel61, It is you that brings tears to my eyes as you set there in pain and suffer in silence with no one there beside you. It doesn't matter if your words don't come out just right. We all have trouble explaining ourselves on our emotions get the better of us. We can figure it out together.I am blessed not to have pain with my MS. There are many in the chat room, however, that deal with pain, both big and small, on a daily basis. Perhaps they could share tips and ideas that might help alleviate some of your pain to make your life less painful and mor liveable on a daily basis. Simply being beside you and walking hand-in-hand will help more than you imagine period please reach out so we can find you and walk with you and talk to you on a regular basis. We want to help you by simply including you and being there to provide support and anything else you might need. Until you reach out again, please remember where you're thinking about you and sending positive vibes years away period take care, and remember also that together we are stronger. Fancy59.
Thank you Fancy59! Your wonderful writing has inspired me to speak. I am one of the silent people. I have MS and struggle like you all. I have been with this site and everyone since it started about 3 or 4 years or more ago. All your postings help me feel part of a family where everyone really understands what it feels like to have MS. You all inspire me and help me deal with all this uh stuff. Thank you all and I am so glad for this chat website. I will go back to being silent. 😂
Kakimac, I am so glad that oùr posts help you deal with MS all the stuff it piles up on you. But there is so much more to the chat room than just shadowing and watching it without becoming part of it. Too really feel part of the family, you need to join in. Join the birthday club so the family can wish you a Happy Birthday on your special day. Ask specific questions to problems you're dealing with on a day to day basis. When you're having a bad day and you're depressed and upset, lean on the broad shoulders of the chat room and talk to the ears that listen 24 hours a day. It's these little things that really make the difference. Instead of setting on the sideline, these little things really include you in the family, give you the feelings of support, friendship, and love. Let us be there for you. Let us answer your specific needs. Let us encircle you in friendship, caring, compassion, and understanding. Fancy59.
Thank you so much Fancy59, for a truly inspiring, heartfelt, wonderful post. After a few months away in the spring, after a really terrible time in my life, I posted a long post and got so many wonderful responses that truly made a difference for me. I am grateful for this site and grateful for all of you that are there for me and everyone else. Take care and sending hugs.
Helpmeup, I'm sending the hugs back to you tenfold. Thanks so much for the kind words. They mean so much, and they really make the work we put in in the chat room worthwhile. Fancy59.
For all the active community members that responded I wanted to thank you for taking the time to verify the entire chat room supports those that set at the sidelines in silence and suffer. Thanks for being active in the chat room because it would not be the success it is without everyone's support and input. Fancy59.
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