Patients Multiple sclerosis
Topic of the discussion
Posted on 5/22/18 3:54 AM
I am hoping to create a discussion where each of our members can share insight on how they cope with their Multiple Sclerosis, be it mental activities, social activities, or physical activities. Please also include your current stages of MS.
Thank you and I look forward to the responses.
Beginning of the discussion - 7/20/18How do you cope with MS daily? https://www.carenity.us/forum/multiple-sclerosis/living-with-multiple-sclerosis/how-do-you-cope-with-ms-daily-159
Posted on 7/20/18 9:43 PM
That is an excellent question. For me it depends on how I feel on a particular day, however I have been disabled (unable to work or go to school since age 48) but before that I had relapsing/remitting and it was never diagnosed so I went along not knowing (occasionally having to find a discreet location for urinary symptoms as I was in sales and on the road most of the time). Now that I don’t work I function depending on how I feel physically. It makes it difficult to plan anything. When I lived in Atlanta I was prescribed enough medication to manage symptoms if I had a planned event (such as Ritalin for fatigue that I relied on to get through my sons wedding) and pain medication for pain if that was an issue that made it difficult to function when I needed to. One thing that became impossible was outdoor festivals (I tried several and in the heat as that’s usually the time things like that are scheduled I fell often). I’m better in temperature controlled environments although not always, so that can help with planning anything. I also try to rest during the day if I have some sort of evening event planned (though as I progress it’s becoming more and more difficult) ...
Ive learned what I can and cannot do to stay as even as possible, however as stated above often things are beyond our control such as getting an infection which wreaks havoc on my system. All in all it’s difficult.
How about you @Lee__R
Posted on 11/12/18 7:36 PM
@LynndMS great advice!
What job function do you do?
I have found also for me it is a mental game also. I have to mentally prepare myself for events, work, etc. Meaning, i need to have my schedule planned ahead... if someone calls me the spur of the moment and invites me to dinner or wants to come over, I about 90% certain I will deny the invite because mentally I need to prepare myself. Do you experience this?
The tingling pain can bring me to a cry and the pain can radiate so bad at times, it seems not matter the medication, nothing will calm it down.
Posted on 11/12/18 8:19 PM
I can’t “mentally prepare” as any of my autoimmune diseases have a mind of their own.
I was in outside sales in the transportation industry .. I was blessed with a great job and was very successful so I did well financially. I put my son through college and went back to school myself. After my MS lesion that brought on diagnosis (in right frontal lobe) I became unable to memorize anything and my organizational skills left the building too. I even talk in circles often ... it’s also part of emotional processing and that’s when depression got much worse.
What’s your job? If you don’t mind telling me your age I’m curious. At diagnosis I had many older lesions but I managed to keep moving ... the last one stole my life ... I pray for you to not go through this.
Posted on 11/28/18 5:02 AM
@LynndMS I did not mean "mentally prepare"in the sense that I know I will be "ok", but rather in the sense that I am mentally prepared to deal with whatever MS decides to bring on that day/time. Does that makes sense? I mean, if it would be a spur of the moment thing and I do not have the ability to mentally prepare, my mind will go haywire and I will be overwhelemed with anxiety regardless of what MS brings.
Congratulations on having a successful career; at least that helped you prepare financially and also provide some sort of stable ground for your child.
I worked in sales and after seeking out a counselor and doing some inner examinations, I left that career. I still manage to work some. I do a lot of odd jobs thanks to the internet and the resources such as upwork and freelancer.
Posted on 11/29/18 12:19 AM
@siemprelucha please don’t take offense. I really cannot do anything as between MS and Lupus almost a day doesn’t go by with something. I’m happy I was able to take care of my son .. looking back I had relapsing/remitting MS then and Lupus possibly since childhood as I used to run fevers for no apparent reason and several childhood vaccines didn’t “work”. As in I got the diseases I had been vaccinated against. I was 3 months premature and your immune system is one of the last things that develop so maybe that’s a factor ... sadly I had to even quit school with my last MS lesion as my organizational skills and memory left the building. I drive people nuts repeating myself, and talk in circles most of the time. Often jumping all over the place ...
I try and stay positive but it’s really hard .. I have very little support.
Posted on 1/26/19 3:31 AM
Hello members, I am reactivating this discussion in hopes it turns up some more discussion... leave your tips and advice on how to cope with MS and its symptoms.
@Robert @tammy13 @Maryanne @Greene60 @Intruso @bld99rad @marylouise1957 @sweetlydia66 @dawndawn @pattysunshine @Asaucier @DeeinVA @Rayodiorne @msslady @padres44 @Kjess_srn @copa20 @Kelcrna @Baxter @looking4 @Triciarie @aimming @Jamiet