Patients Multiple sclerosis
Topic of the discussion
Posted on 7/19/19 2:50 AM
Living with the effects of multiple sclerosis affects each individual to different extents, depending on a variety of factors, beyond just the progression and type of MS.
I propose to each of you to share atleast three things (share more if you would like) that help you manage the effects of Multiple Sclerosis, whether it is a physical activity, a thing you participate in, a form of treatment, actions you take, people you interact with, etc. Also share any other helpful advice you may have for others!
Beginning of the discussion - 7/19/19Top three things that help you manage MS https://www.carenity.us/forum/multiple-sclerosis/living-with-multiple-sclerosis/top-three-things-that-help-you-manage-ms-1180
Posted on 7/19/19 4:34 AM
1) honestly...sleep. constant fatigue physical and mental has it's toll so sleep is the ony think that stops my racing mind and lets me literally rest
2) mild exercise while i can bear it
3) good pain killers lol !!
Posted on 7/21/19 3:54 AM
1) definitely sleep !!!!!!
2) my therapy
3) my cat Whiskers :)
Posted on 7/21/19 11:29 AM
1- Mental well being. I’m taking Lexapro! I was given the wrong medication for many years. My mentality means a lot to me not only with dealing with the ups and down of living everyday with MS but with helping me deal with living in a nursing home at 56. Not easy at all! Especially when your very young at heart not to mention the death of my husband, my rock, at the age of 54. MS has taken the most precious gifts from me!! 🥰💙👍
2- or kids
3- music! Family! Friends! Not in that particular order on a daily basis
Posted on 7/26/19 12:58 PM
Large print daily calendar notebook. (I call it my "brain"). Parking in the same general area if no handicapped spaces are avaivable. Setting notifications on my phone.
Posted on 7/27/19 7:45 PM
@Hidden username I love your recommendations. I need to incorporate your last two. I set notifications on my phone but I get exhausted and just am like ok I won't set this one, I will just remember... and you know how that goes.
Posted on 7/27/19 8:47 PM
Limiting myself to three things is a difficult proposition. There is so much that can weigh you down. Right now I am in a rehab facility after my latest wave of attacks that pushed my neuro to change my diagnosis from RRMS to SPMS. But from what I've learned over the past 4 months of flares, hospitalization and rehab, my top 3 would be:
1. Mental strength- not just to endure the loss of what you could do, but the for chance to regain some of what you had in the past, be it walking, memory, or anything.
2. Support- There is nothing that can reinforce your recovery, or attempt like having a support system (friends, family, even your therapy staff) pushing you to do you best everyday, even if those steps are small.
3. Schedules- Use every device, application, resource you have at your disposal to keep up a constant routine. I use my phone, tablet, and home assistant to remind me of everything I need to do, at the same time, everyday. Plan exercise time, bed time, time to get up, medication reminders, even when to cook and eat. Having all that constantly drilled in to my head gets annoying, but i don't miss pills, and makes sure I can keep up with a demanding 5 year old, even though he has 10 times the energy I do at all times.
I hope this helps someone out there, and if you want to chat, just message me.
Posted on 11/21/19 4:49 AM
@Hidden username excellent recommendations. Mine closely resemble yours. I will add one addition to my list... call it my top 4 :)
1) Support: support is necessary. No matter how strong your mental strength is, knowing there are others there that care for you and give you a reason to fight, is needed. They help strengthen you and encourage you to push harder. I will also add, that having a pet (dog or cat), if you are able to care for it, brings great joy to your life and also serves as amazing support.
2) Smile and find something that you enjoy: no matter what form of MS or how extreme the progression is, find something that makes you smile or brings you joy. Maybe that thing will have to change and you will have to adapt, but you need something that you enjoy - that you look forward to each day... could be as simple as watching the sun set, watching your favorite show (don't binge watch so you can have something the next day to still look forward too - a trick of mine), feeding your dog or sitting on the porch with your dog, etc.
3) Organization (scheduling): keep a routine, keep notes, and set reminders for your daily tasks: taking medicine, rehabilitation exercises, call your family/friends... it will help you stay on track and keep up despite all the effects of MS.
4) Purpose: do not loose track that no matter that condition, you have a purpose. Life changes and with that our purpose may grow... don't loose track or hope that you have a purpose! Dedicate time to yourself everyday to focus on that and work towards achieving it and being a better and stronger you.
Posted on 12/1/19 12:58 PM
@Hidden username Hi newly diagnosed rrms ,I like your post good advice
Posted on 12/7/19 1:38 AM
@Hidden username Sorry for the loss of your husband. I am 73 and my wife died in August this year. I know how you must feel. I feel very alone. I still live in our house alone. I live in a small town and because of my condition (MS) I have not met many people and don't socialize much. A very deferent lifestyle than I am used to. We moved out here in the country a few years ago from a bigger city.
I hope you get to doing better. It is a difficult journey but you need to hang in there and try to enjoy your life as much as you can. BW