Help and support are musts for those living with MS and its unpredictability. Yet, MS can be frustratingly hard to explain and difficult to understand. This can make it tough for those not living with MS to know how to help. Have you experienced challenges around getting the help and support you need? What advice would you give someone newly diagnosed about setting up a support system?
An ms support group was the most significant tool for me. The National MS Society supplied booklets for all the symptoms I was going through and being in a group that knew what I was talking about, even though I didnt, made a big difference in how I moved on from the anxiety and ignorance of ms. It is still my anchor, it gave me the foundation to build upon.
Having ms and trying to get someone who does not have ms, 'to get it', is like trying to describe the sound of the breeze blowing through the leaves of a tree to someone who is deaf, or, describing color to someone who is blind. As long as I remember that, having people who love me is support enough.
You make a very good point! Support groups are helpful and I'm currently looking for the right one!
I find that MS Connection provides a lot of support and really helps me when I get depressed or angry. Reading other people's posts or responses seems to calm me, that there are other people out there that understand what we are going through and that is comforting.
For one ask your family to go to the Support Group with you and hear what others have to say... Second and most importantly is to have them go to how ms feels . Com and do everything on the list!!!😀😁😂😂 Then maybe they will get half of what we dill with. And try and get someone to help you out that isn't related to you.
When I was newly diagnosed, I used the one-on-one peer support. I was going through a thousand emotions and had a thousand questions. My peer answered my questions and gave me lots of pointers and provided help and support for months. He was invaluable and quite an experience and I was very thankful for my peer.
This just gave me a wonderful idea. Ty 😊
How did you get in contact with a one on one peer support?
I wish I knew. I thought that my family understood until I moved in with them. Now I'm told that everyone is cold and it's all me when the a/c is turned up too high. I'm watching my 3 year old grand daughter while my daughter works. I can't keep up nor can I understand what she is saying half of the time.
I am now using a cane and going through PT. I could sleep during the week 24/7. I think finding people who know what the other is feeling would be required. My family doesn't know and only know how it affects them.
It's worth a look to check out the hunting-related news and updated features, and while you're there, take time to play a game or two for fun. https://playpc.io/reviews/piano-tiles-2-free-game-review/