Hi, I am new to this site but wanted to reach out to ask does anyone else feel alone when MS symptoms happen, the past week I have experienced numbness, balance issues, fatigue, pain, eye disturbances, sickness and well feel run down, I'm the type of person who hates being a burden to anyone and well I don't go into detail of how I feel with living with MS to anyone who is close to me, I joined this group as I was hoping to get advice from people who go through this, I was diagnosed last year and sometimes I feel scared about the future what's going to happen and how am I going to deal with it, I know most of you are in the same boat but how do you deal with this? And how do you deal with your symptoms? I try to stay positive especially in front of my family but inside I'm crying with it all any tips would be helpful
Hello DonDon, Over time you will learn that many of the ms symptoms are fleeting flukes that last only a day or a week, shorts in the wiring that give the impression of a bad trip, they do go away. As you watch the show you get to appreciate those days when things work. Every day will be a surprise so dont expect anything and it will be less bothersome. It is a private challenge to adapt to the new physical circumstances(took me 5 tries to spell this), some funny, some not.
Thank you for getting in touch with me, I guess the whole MS process and living with it is something i'm still coming to terms with, I just hope when the symptoms occur in the future I continue to have strength to get through it, seems this spell of symptoms has all hit me at once, I play the piano and it scares me that I won't be able to do this one day! I guess since I've been diagnosed one thing I have to come to terms with is I can't really plan for the future and I have to take each day as it comes, it's just hard to get my head around that really. Thank you for your words it's much appreciated xx
For me, I feel alone most of the time with present symptoms even with my close family and friends knowing what I go through. Most have purchased books to see what exactly MS is. Even with a great support system, I feel alone. It is fleeting though. I am just recently diagnosed but also not recently suffering-had it for a while. I try to remember that it wont last forever (hopefully) and even if so, I will learn to adjust. My right side has been numb for 5 months now, I barely notice. My neurologist makes jokes saying its good (he also has MS), like whe he has lhermittes sign present its a nice wake up jolt so he will look down just to get a burst of energy. I try hard to make humor out of the situation. someetimes it doesnt work. I have found a few books lately written by people with MS that give a nice sense of humor to it all while also being very relateable. "Awkward *****: My life with MS" "Stumbling in Flats" and "MS Madness" are a few that have made me laugh along the way. Easy reads but worth it for me. When I am feeling extra lonely Ill open one up and realize other people are going through what I am as well. I hope you find some helpful advice and get to feeling a little less lonely.
Apologies for the delay responding the last few days has really taken its toll, I appreciate your words and I will look for those books, as I think it may help lift this black cloud that I seem to be under at the moment.
Im sorry to hear that your right side has been numb if I had a magic wand I would wish that no one would have MS, it's good to hear you have a friendly neurologist and a great support system though 😁
Thanks again for getting in touch xx
Welcome to the group. We all feel alone. We are in a specific group that a lot of people don't understand. First thing most of us do is read everything we can about MS to understand what is going on. When going to doctors always have a list of questions or statements to make and take notes, if necessary bring someone with you so they can listen and take notes to. And when you wake up every morning, you will not know what kind of day it will be, whether it is going to be a good day or a bad day. Plus, if you are feeling very lonely, drop by here, there are always people that will chat with you.
Thank you for getting in touch and for your kind words, yes, that was the first thing I did was to read all about MS when I was first diagnosed, in a way, I was glad I was diagnosed as I knew something was seriously wrong and it gave me that explanation!! Just sometimes it overwhelms me and I get abit scared and I think gosh what will the future hold, I just need to focus on each day as it comes and stop beating myself up when I can't actually do things!
Thank you again for getting in touch xx
DonDon...i'm more often than not feeling alone as well. I play guitar but due to shoulder issues cannot at this time, just picked it up last week and was not a good idea or fun time the whole 3 mins or so i did it. One unpredictable moment at a time, right!? If i can only remember where my feet are at during this very same moment as i often get sucked right back into the show unfolding around me...not fun having to be a player and responsible adult at certain moments when i'm expected to be capable of multitasking....lol, but very very overwhelming, frustrating and sad.
Gonna write a book called "MS for Dummies...My Edition"....lol, will be full of the countless one liners used to help me cope amidst the uncertainty of daily living. You just can't make up over half this "stuff" MS brings to the table and plate of life one could unfortunately say.
Thank you for your message, I am sorry to hear you have been suffering and the issues you have been faced with playing the guitar.
When i play the piano I have to feel the keys to play dynamics however when your hands go numb it definitely makes you play a different way where instead of feeling the music I'm concentrating on how light or hard to press each key and make my hands move up and down the keyboard which doesn't make it a comfortable play but one I will need to adapt to needless to say.
Will look forward to reading your book 😁 lol it may prepare me on what's to come!! Hope things do improve for you though and thank you for getting in touch it's much appreciated xx
I am so glad that you reached out; this group is a great place to connect!
You may also be interested in attending a self-help group in your area. You can use this link
to search for groups. I encourage you to contact the group leader before attending to confirm the date, time and location and to ask any questions you might have.
There is also a peer support hotline that is available 9am to midnight ET, 7 days a week and is answered by volunteers with MS. If you would like to connect with someone by phone, the MSFriends hotline may be reached at 1-866-673-7436
MS Navigator Stephanie
Thank you for getting in touch and for your kind words.
As mentioned I am a newbie and I actually found MS Connection when I was searching online about MS and how people deal with it.
Can I ask, is this a free site for anybody to join and post? I assume it is?
From the comments I have had on my post it has made me realise I am not alone and there is support out there from people I haven't even met! Which is fantastic to know and which I am grateful for.
I looked at the self help link however I am actually based in the United Kingdom so it doesn't cover my area, I will look closer to home to see if there are any groups near to where I live.
Thanks again for getting in touch xx
First let me say thank you for sharing your experience and being open and honest. I completely understand how you feel. I recently had my first relapse after being diagnosed 4 years ago, and I just cried and cried because i felt alone. I didn't know how to explain my symptoms. I didn't know how to make people around me understand how I am feeling, especially because this is a "silent disease". I just joined the community today and I am glad to find people that I can share this journey with, that will understand the ups and downs of what we are dealing with. Please know you are not alone. I pray you find your way through this and things become better for you.
Thank you for your kind message, I'm sorry to hear about your relapse, I know it's very difficult when a relapse happens and yes it's hard to explain to people exactly what is happening.
I believe being part of this community will definitely help, since joining, the messages I have so far received has lifted me up, just to have someone tell me it's alright and I understand means a lot to me!
Thank you for sending me your good wishes, I send them back and I hope things improve for you, remember your not on your own something I learnt just recently from posting on here!
I too feel lonely. The days seem so long. I’m a teacher so I’m used to lots of people around and being busy. I hope you’re dealing with your symptoms as best you can.
I was diagnosed in late July of this year after a brain MRI came back showing lots of MS lesions and a spinal tap came back positive for high amounts of elevated protein 'o' bands. I agree with the post about shorts in the wires, that's a good way to put it. I get the depression and often feel like I don't wanna get up and go, like I used to. It does mess with your head this illness. However, it's best to try and stay positive best you can. I think trying to find an MS support group in your area if possible would be a good start. Of course were here on this site are always here for you. Music helps me a lot to kick a bad spell.