Relatively new caregiver looking for some friends :)
Hi all-
My name is Sarah. About a year ago, I became seriously involved with my partner Jess, who was diagnosed with relapsing-remitting MS in 2001. She (very fortunately) has had only mild progression of her condition and had been in full remission without daily medication for almost three years.
Fast forward to a couple of months ago - Jess started heading towards relapse, and now is in full blown relapse to the point of no longer being able to work. Physically she's pretty stable, but she is having a lot of cognitive symptoms that are really taking a toll on me and all of our family relationships (we have a three year old daughter). This is my first really concrete experience with MS, though I have known some other folks who dealt with the disease, and to be honest I am scared out of my mind....
How do you cope with this on a daily basis? I love my partner and I want to care for her in the best way I can, but I feel like I'm wandering in a dark forest without a flashlight...I just keep running into trees. She has a new neurologist and I am struggling to find a local (or any) group of spouses who might be able to give me some insight into how we can still live our lives as a family without letting the disease conquer us all...
Any insights would be appreciated. Cheers 😀
Hi Sarah. I didn't realize until just now that I didn't actually belong to the site as I've been receiving their newsletter for months. Anyway, I'm a bit surprised no-one has replied to you yet so have asked my husband, Arohk, to connect with you.
I was recently diagnosed with RRMS, though it's suspected I've had it for many years. The cognitive issues are getting really tough for me as well and I know it drives him nuts at times too. He could also use the support. Please know that you are not alone, and even if you're partner can't sometimes show how much your help and love means to her, rest assured it means the world to her. MS is a funky disease that steals our bodies and minds in little bits and pieces, and sudden big changes are very hard to adjust to. I had to stop working years before I knew what was actually wrong and my life has steadily become smaller and smaller as I am unable to do more and more stuff that used to be a walk in the park for me. And the mood swings.....well I'm sure you know what I'm talking about! Add that to us being female with raging hormones already, and well, it can get a little choppy sometimes.
If you'd like, I will also be here to support you as I'm able. Just let me know by posting back here.
Hugs for you, your partner and your daughter!
Wordsgood
Hi Sarah I am Wordsgood hubby I just joined myself and sent you a PM hope to talk with you soon
take care.And there's another clue about my missing brain cells. I did not know you could PM people on this site!
Thanks Dear. Am sticking my tongue out at you now...........
Wordsgood
Hi Sarah,
I just joined this website. My husband and two of my three sons have MS. I would be happy to be your friend! My husband of 42 years has had MS for 26 years so I have been around this disease for quite a while.
So if you could use another friend just say the word.I am known as dmhmdh53 or you can call me Donna 😀
