RRMS to SPMS in 1 month and Losing Optimistic Attitude

By junaej

1 min read

I was DX in 1997 with RRMS, and since August 2018 my whole life has turned upside down. I’m having problems walking so I’m using a Rollator and a wheelchair as needed... Fatigue has gotten so much worse and it wipes everything from me, I’m unable to stand...

I use to be a very optimistic woman until I started getting really bad... I’m still optimistic especially when I feel I’m going to fall I say to myself I can do this... I have lost both my parents in the 22 years I’ve had multiple sclerosis... I recently lost my dad in 2015 and I didn’t have 1 flare up until August 2018...

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Kim DolceMember
<inline-mention user-id="4109840" username="junaej"/> , I'm so sorry about your MS challenges and the grief you've endured. It's tough to manage this disease and still deal with all that life throws at us. It's completely understandable that your optimism foundered when you had a relapse after so many years. This disease whittles away at us both physically and mentally, and it's only natural that we feel wounded, then scarred, and ultimately changed in how we see ourselves in the world. We're so glad you told us a little about your personal MS journey and hope you'll keep reaching out to vent, comment, and ask questions. We care and want to help if we can! Thinking of you, Kim, moderator
1. junaejMember
 Thank you I don’t enjoy venting because I feel it makes me feel worse. Today is my daddy’s heavenly birthday and all I want to do is cry because my parents were with me through every up and down with my multiple sclerosis and now I don’t have them, my life feels empty and alone and I don’t like telling my kids about how horrible I’m feeling and about my loneliness I feel all the time. I absolutely have nobody to talk to about this worthless journey.
doctp12Member
Well, a bit off topic but have to relay a story. I’ve had RRMS for about 8 years, on Tysabri and doing fairly well but balance and twitching and spasms getting worse, but especially short term memory!! So I forced myself to drive to the mall to get Christmas presents and also something I needed... I hate shopping and malls!! Went to Macy’s, got 2 gifts for my wife and the thing I needed for me, all at Macy. Put them all in the same bag, successfully got home and hid the 3 items in the Macy bag in the garage, she never goes there. Later, I removed my item from the bag and left the bag with her 2 items where they were hidden. Yesterday went into the garage to get the bag to wrap her 2 presents.. bag was gone!! What the heck!! I searched the entire house 3 times, everywhere I might have hidden it again, no luck! Now I’m very upset, angry and depressed . Fell twice! Told my wife what happened and she understood and helped me, no luck. Minutes ago, while she was baking for Christmas, she found it!! I had put it in a kitchen drawer where she always goes, she is an excellent chef and healthy organic meals every day. Why the heck would I ever put the gifts in a place where she always goes??? I have absolutely NO recollection of my moving the bag from the garage to the kitchen cabinet where she constantly goes!!! What the hell is wrong with me??? She even took a photo of it in the closet. I swear, that I have absolutely NO recall of moving it especially to a place where she goes all the time. Needless to say , it put me in a terrible depression, fell twice and realize how I am worsening. Should I laugh, cry, realize I’m just getting worse. Every morning I make lists of things I must do for the day, then lose the list!!! Any suggestions or advice, this one really knocked me out! Tom
1. Janus GalanteModerator
 doctp 12, there is another thing that I use to kind of reinforce the information on the post it notes, and that is I call on Google to remind me of an appt.,or event or whatever the case might be. I.E. "Google, remind me that I left my package in the garage...." also having it set a timer for anything you need timed is a great help also. Hope this might help...and I hope you're having a much better day today Tom!
Janus GalanteModerator
Hi Tom, I don't think you went off topic at all. PLUS, you definitely are not alone in this! <a href='https://multiplesclerosis.net/living-with-ms/memory-loss-manageable' target='_blank'>https://multiplesclerosis.net/living-with-ms/memory-loss-manageable/</a> <a href='https://multiplesclerosis.net/living-with-ms/there-are-upsides-to-having-a-poor-memory' target='_blank'>https://multiplesclerosis.net/living-with-ms/there-are-upsides-to-having-a-poor-memory/</a> If you have the chance please read these articles and the comments posted as well. Hopefully they will help to ease the distress, anger and frustration you're feeling! I won't even go in to detail about the MANY times that I have lost, misplaced, or even threw away certain items or information! I hope that the falls you sustained didn't physically hurt you, and I am happy that the missing items were eventually found. Something that I had to learn was to go easy on myself. Especially when I did something that was especially frustrating. Another thing was..sticky notes! On top of the breakfast bar. I found that writing notes to myself on regular pieces of paper, didn't work. (Easily lost.) Bright colored stickies on the other hand, helped tremendously! Anyway, those are my thoughts for what they're worth. I hope others in the community will weigh in as well. Just know we're here for you, thinking of you today, and remember...you're not alone. Many of us can relate! Janus