I have been diagnosed with RRMS about 18 months ago. I do monthly infusions and I also do iv vitamins weekly. I tend to take care of myself. I am very prideful and don’t ever ask for help. I don’t even ask my husband. I take myself to the dr, I take myself for tests and treatments. My question is how do you let go of your pride and start asking for help? This morning I woke up and fell walking downstairs. It was 3:30am and it woke up my 16 year old daughter. It breaks my heart and angers me so bad that this is what my daughter has to see. I’m supposed to be the caregiver. I’m supposed to be the one jumping up in the middle of the night to check on my kids. Not the other way around! How do you moms deal with these situations?
My heart breaks for all of you fighting this mess. I’m on the other side... trying to be a Mom to my daughter who has been fighting MS for 14 years. Yes, pride gets in the way and it’s a fine line to walk. I want to help and “fix it” but I can’t. She doesn’t want to be dependent and had to learn to accept help. It is still hard. I’ve come to the realization that for us, education about the disease and communication among all parties are the two most important components of how to survive. Admitting that you need help and taking advantage of all the medications, therapy (physical and emotional) and mobility aids at your disposal will help conserve energy, maintain independence and educate you/your family. If you’ve got a supportive family, they will appreciate going on this journey with you. Being excluded hurts them and isolates you. If you possibly can, try to get past the pride and let them in. Sending love and keeping you in my thoughts. Sharon
I am suffering from same disease and this thread really help me.
Thanks a lot
I am very prideful and don’t ever ask for help.
Ditto. That attitude was taught to me by my parents, and then wildly and strongly reinforced by 8 years in the Army, and then reinforced again by raising kids.
Today I view that attitude as both a blessing and
a curse. It's a blessing because that attitude will get you through tough times and allow you to push yourself when needed, but it's a curse because there's some times that I can be utterly stupid and not ask for help when I need it. And with MS, at some point(s) in your life you'll likely need help.
I semi-effectively "hid" my MS from my kids when they were growing up. The course of my disease meant that was somewhat successful.
In hindsight, they still picked up things simply from the fact that kids are super-observant and are not stupid. If I had to do it again I'd do 2 things somewhat differently:
- Talk to them more about my MS, and what I was feeling and why this or that had to be a certain way. As a male -- typically closed-mouthed and disliking talking about feelings and such -- that fit into "my profile" and social expectations. But it was dumb of me.
- Make sure to emphasize that they were different than me and didn't have MS. I think that would need to be done just to not allow them to develop a habit of not doing things or to use excuses. But since I think "internalizing stress" plays a role in MS, I'd also want to teach them how to properly deal with the inevitable stresses that comes with life.
Of course, your family and situation is different, but we do seem to have at least a couple of the same attitudes about kids/life so those points may be worth pondering.
Thank you for sharing this - it is definitely a tough situation to deal with. I'd suggest you consider joining a support group in your area: Join a Local Support Group
. Please feel free to call and speak to an MS Navigator as well at 1-800-344-4867 Monday through Friday, 7am-5pm MT.
I’m not a Mom. But I do know something about holding pride differently. Asking for help does not make you weak. It makes you strong. How you handle your illness will set an example for those who love you. Do you expect your loved ones to be able to do everything? When your children are struggling in school or with bullies, do you want them to remain silent out of pride?
Pride means something different to me now in the long haul (Dx 2000). I am proud I can vocalize my need without shame. I have fought long and hard and continue to do so. But that doesn’t mean refusing help when I need it. What I have found is that I have more energy to do the things I am able if I let my loved ones (who are so desperate to help) take some of the burden of those things I struggle with.
I heard something quite recently that struck a cord with me. I’m sure I will butcher it, but it goes something like this: If you don’t let someone help you, you’re taking away their miracle.
Think if the roles were reversed- if your husband had a disease and you didn’t. You would want to help him in any kind of way. Not out of pity but just the kindness and compassion of being his wife. (FYI I feel the hugs & kisses as you speak)❤️❤️❤️❤️☺️☺️☺️☺️❤️❤️❤️❤️☺️☺️☺️☺️☺️
Pride will kill us before anything else, let it go. I had a problem with pride, but let me tell you, all the energy and anger that came along with fighting against asking for help or receiving help, that is so unnecessary, and such a waste of time.
You’ll always be a mom caring for your kids big or small. You should pat yourself on the back, and your kids are like you I would be so happy and proud, it tickles my heart.
Go easy on yourself, and give yourself a break too. Sometimes we need the help to have more energy- clarity and just being a mom❤️❤️❤️☺️☺️☺️
I am not yet a mother myself. But it definitely sounds very challenging and thank you for sharing your story.
I wonder if there are any supports your physician can connect you with? Social workers have access to resources to help with managing at home. If you are having physical symptoms associated with MS, an Occupational Therapist can assess you in your home environment and make suggestions for managing your daily activities. A physiotherapist may be able to help with improving strength, endurance and etc.