Do you ever feel like your family doesn’t understand what you go through with MS? I’m feeling that way today and do sometimes.
My 13 year old son who has high functioning autism but is pretty self sufficient in ways still adds more daily stress being a Mom. He sees me lying down more this past year and it makes me sad at times, because I want to do more things with him like I used to, but the mental & Physical fatigue can be bad. Fatigue is my worst daily symptom.
Right now, I’m going through a mild relapse so I am more weak, more fatigued, have more pain which doesn’t help. Had an arguement with my hubby this am, even though he’s been always very helpful, but he gets frustrated too because he’s only human. He said something and it set me off. He worries about me, my son does, my whole family and friends. I get tired of people worrying about me but I know they care.
When I’m not going through a relapse, I can usually do something I like and a few things I have to do everyday. I’m grateful with what I can do. I can still walk about 10-15 minutes with cane and use mobility scooter at home everyday since severe May relapse. I’m getting a different scooter soon through a specialist and rack/lift for back of my car. I have progressed a bit as my neuro told me, but still RRMS I guess. I am just sick of all these relapses I have gotten since Dx 6 years ago. Sometimes I am sick of MS!
My relapsing remitting MS can be aggressive even though I eat healthy, and try to exercise a few times weekly. But I really want more energy daily than lying down all the time. I’m sure many of you struggle with this. My path has taken a detour this past week and now I decided to start a different IV infusion treatment-Lemtrada. This Tx is supposed to help reduce frequent relapses for people w/ aggressive RRMS. It’s a very risky treatment because it shuts down all immune cells and in time, body will grow back new ones. Whoosh, but still It’s worth it to me at this point My choices now are Slim Jim now.
I’ve been on OCrevus IV treatment for over a year and still had 3 relapses. My doctor and I have not seen reduction like what we hoped for. So time for a new plan. I appeciate it sometimes when people say to me don’t lost hope or give up which is true, but just not what I want to hear when I’m feeling mad, sad and frustrated.
I know we all have our up and down times with MS. I have not lost HOPE, this I still have. But my son’s comments at times that he wishes I could do more and my hubby wishes the same can hurt. I question my purpose a lot lately. But I can do what I can do!
Anyway MS friends, thanks for listening to my vent today. I really needed to get this out. Any encouragement is always helpful.
Thanks, Nikki
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nicoly3467
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You have described much of my feelings. I have a husband who is beyond patient and caring but I still push him over the edge sometimes. My son is almost 17, but I already had been diagnosed for 2 years when I had him. He has never had a healthy mom. I know what you mean about losing your purpose and feeling like you have let your family down. As others on this forum have told me “this too shall pass.” It is a platitude and doesn’t help when you are in a dark place. But (annoyingly) it IS TRUE. Please know that you are not alone in your feelings about your family and your purpose.
Message me anytime you need to vent. We are in this BS together.
Keep your chin up (or try to be less hard on yourself)- Tracy
Hello Nicoly3467, I hope your new treatment works out for you. I know you and your doctor talked about going on Lemtrada after stopping Ocrevus so soon and the risk associated with your immune system. Good luck and hope you feel better.
Venting is always aloud here nicoly3467 ☺️ as this monster is very very frustrating!!! For us, let alone our friends and family.
And being tired all the time on top of trying to to do every day tasks? Well, that can just push you to your limits some days.😞
Try talking to your neuro about that. There is medication that can help! It's been my life saver!!! 😄 Tell them what's going on! And get the help you need!!!
Thank you for sharing 👍. This hits home for a lot of us 🤬. Stay as positive as you can and hopefully it will get better soon 🙏. Prayers are with you 😉👍🙏🐾. Ken 🎃👻
Heck, none of my friends or family have. ever even asked a single question.
Edited to add that the exception to the above is my wife wo is truly an angel who deserves a better life. She spent ~11 years taking care of her mother (who was also a saint) after we moved her from her house to ours as she progressively declined from dementia/Alzheimer’s until she passed away at the age of 98. A few years ago. When we moved her in my wife had just begun the last year of her nursing degree which was s late life decision which I wholeheartedly supported. Then more “stuff” started to happen with me and she just transitioned from her Mom to me as my caretaker. She’s never actually had the chance to officially work as an RN but even though she didn’t get paid for it she sure did all the functions.
I’ve only known about it for about 10 months although I suspect it’s been lurking in thee for some time. I think my family is used to having something wrong with me after 2-3 heart attacks, kidney disease, Cancer and 27/28 surgeries. Plus I don’t make it easy to talk about even though I’m an open book on this subject.
Not so much really. We drifted apart after my parents died far too early. When we do talk I tend to be the hub of communications.
Besides, I’m tired of my health being my life. It’s just been one thing after another. I just wish I could take my wife out of the caregiver role and provide some fun and enjoyment.
nicoly3457 Nikki, as I have learned in the past year or so, in this forum of MS family, MSers listen, understand completely, empathize, and reach out to pull each other up when we stumble and feel down. Here you may speak your truths and the MS family will listen. Until MS afflicts someone, it probably is the rare unaffected person who truly comprehends just how MS expresses itself in almost every aspect of a life. What holds us together here in the MS family is the hope we all share that somehow tomorrow will be better. But when tomorrow seems far away or too slow in arriving, come here, tell us. We'll listen, hear you, and send you our support and prayers, and hold you in our hearts.
Doing it in front of your family will probably just create more drama. Who needs more drama? Enjoy your good days between relapses. Too bad the Ocrevus wasn’t helpful, I totally get that. I am using it too, and have no idea if it’s working.
I’d hate to jump off just to find out that it’s been slowing my progression.
Yes I totally understand. I guess the way to tell if OCrevus is working is if your relapses have reduced more and/or delayed any type of disability from forming since you started it. If that’s the case, then OCrevus is great for you! What I read from studies, and heard from my doctor, it can take up to 4-6 months to be fully effective.
I knew for me it wasn’t working because I’ve taken it since last year-June 2017 and had 3 relapses since-a mild one now I’m going through, which isn’t right.
My Neurologist suggested Lemtrada. I thought about it and researched studies and testimonials (risks and all), but feel more comforted about it than scared.
Best wishes for you on OCREvus it is a good treatment!
A very warm welcome as you've already seen here Nicky, to our Family! & Also welcome home! I totally understand your frustrations with the fam. I think we all push our's over the edge sometimes, we get edgy & they don't underststand! But we all here totally get it & totally understand! So, it helps to vent with people whom care & get it, they know, so, always remember we're here for ya & now u R family too! Many Prayers🙏& Support for ya!💐🎁💝💗💚💙💛💓💌---Jazmine🌹💜Rose
I live with just my husband who is supportive. The only problem we have is “chore wars” when I am fatigued. He likes things done a certain way and sometimes tries to “help” by watching me and commenting on the way I am doing something. When I am fatigued, I feel angry about this. When I am not fatigued, it doesn’t bother be. So, sometimes, my anger at his comments is a sign that I need to stop whatever I am doing and rest.
I know how you feel, but try to keep telling yourself that you were there for your husband and son for so long and still are, so let them be there for you. I believe everything happens for a reason , your having MS might be because someone else has a lesson to learn from it. Stay strong and be kind to yourself. God bless you and I will ask God to give you strength
Thanks for sharing your story. It helps me to know I am not alone. I too know the frustration of not being able to do routine things, so like you said in later post, I focus on other things and enjoy what is around me. Sunrises and sunsets are spectacular.
It can be so difficult to hear what is said. I finally worked out why it hurt so much is because it reminded me of exactly how I wished it could be! Do you think it might help both you and your boy, when he says he wishes all was how it used to be, you could try agreeing with him, maybe you could say something like, "Oh me too! Remember when we blah, blahed" And reminisce about all the fun things. Then maybe you could ask him for suggestions of what he reckons you could do now. You can then discuss the suggestions pointing out what is possible and not. He then has the parameters to problem solve with you. This could be a rewarding thing for him, as if you do something he suggested (like reading an adventure story to him while you lie down) you could talk about what a fun idea he had, and start new memories of good things? This type of thing worked for me with my husband and kids. But I my mother and siblings and a few friends I haven't seen for dust for years. The upside is, whilst I was terribly hurt by who buggered off, my life has much less stress now.(I had never realized how stressful all those relationships had been). It's good you expressed your frustration. I have found here, is a safe non judgemental place. And whilst ideas (like mine) may not be suitable for you, maybe, hopefully reading them gives you ideas on what may help. Wishing you smiles and laughter, cheers Cris.
What an excellent suggestion-I appreciate this a lot. Actually, my son opened up to me more yesterday and I listened and did agree in wishing I could do the things I used to. He told me he wants me to be “normal” again, which almost made
me cry and I said yes, me too. I told him I’m sorry he worries so much about me and is sad seeing me lie down everyday and how I run out of steam easily, but this part is MS. I told him now I try to focus on doing what I can and sometimes I can still do fun things and he agreed. I know it’s tough for him or any child to see their parent so tired daily and run out of physical & mental strength. My hubby worries a lot about me too. I really don’t want to worry anyone, but I know they worry because they love me and care about me.
We all try to do the best we can everyday with MS. I am working on being nicer to myself when I can’t do things I want to do with my family or just to do something myself, because I have to lie down due to the fatigue. Ugh! But I’m accepting more that I don’t have to be Super Mom or Super Wife and do 100 things a day. The guilt has become less.
Before MS, I used to go all day long between work, being a Mom, wife, doing errands, making dinner, cleaning house, etc. and boy, I forgot what that life was like..Lol. My life has changed 180 degrees and sometimes-360 F since. However, a few things in the midst have become blessings since Dx, which may sound strange. I try now to enjoy the moment more lwhen I’m feeling good (usually mornings) and working on being nicer to myself.
Thanks for your great suggestion about swapping ideas of things to do with my son. I will ask him and that’ll make him feel good.
I felt that way during a relapse. It’s frustrating when you feel so isolated because no one understands. I remembered that they try to understand, that they can’t know if I’m hiding everything, and the difficulty I have navigating life during a relapse because of the fatigue increases the negative feelings/outlook I can have toward the world during that time. Everything just sucks.
I’m so sorry to hear that Ocrevus failed you. I am excited that you have an option to try though, and I wish you the best.
I sound like a broken record here, but changing my diet to keto gave me a ton of energy and mental clarity. Amantadine helped a little with brain fog and maybe leg weakness. I hope you find something or a combination of things that help you to increase your ability to participate in your life.
Hi sweet Nikki...you are loved and cherished! Remember that! Sometimes I feel like this disease is teaching everyone else in my life how they need act, how they are with words and actions. I too have a son on autism spectrum. He is 15 yrs old, some what self sufficient but needs his mom. Its hard for our family and friends to see us go through this. My husband is wonderful...he had to care for me this summer, during an awful relapse, hes now working again. I recently went on Tysabri. No Ocrevus yet...I do struggle daily, take pain meds and diet changes (Wahls diet)
Stay strong and vent..it helps with anxiety and stress to get it out! Everyone is here to listen, pray and support you!
Thanks so much! Glad to hear your husband is so supportive and helped you through that bad relapse. Relapses are very hard to deal with. Being a Mom is challenging and has its rewards too, but having a child w/ extra challenges makes it harder, huh? In addition, having a chronic disease adds to the stew pot.
This online support group is just wonderful. I am so happy I found you all.
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