Frustration with MS: Hi Friends, Do any of... - My MSAA Community

My MSAA Community
5,716 members13,136 posts

Frustration with MS

nicoly3467
nicoly3467

Hi Friends,

Do any of you struggle with frustration with MS, or anxiety, fears or depression with MS? One of my anxieties is getting back to driving my car again locally to stores that have an electric scooter. I have driven a few times lately about a few miles from the house, but I don’t want to do it everyday. Also, not all stores have electric scooters as you may know, only grocery stores, big warehouse stores like: Costco, Home Depot, Lowe’s so this is frustrating.

I have a mobility scooter I use at home off and on during the day when the fatigue strikes or my legs fizzle out. I face this re-occurring driving fear always after another relapse of being extremely weak for a while. I had a mild relapse two months ago. The worst relapse was in May, which left me with a permanent disabilty-one new lesion on cervical spine, less leg strength and I run out of energy much quicker, plus more nerve pain. So I need to lie down a lot everyday now which I get sick of too. Mentally, I’m fatigued too so I don’t want to read, or do anything that uses my brain 🧠 so I lie down and stare at the ceiling. Sometimes I want my life back the way it was over 5 years ago. I know this thought doesn’t help me now, but it comes especially when I’m sad, frustrated, mad, whatever. I learned from my counselor to focus on today and what I can do. I’ve been doing that more which helps a lot, and it’s a daily practice that’s not easy-believe me.

I started a new medicine called Tecfidera almost 2 weeks ago. It’s going very well so far and has reduced my pain in half unexpectedly and has given me more stamina up to late morning time. I’m not on the full maintenance dose yet. So, I look forward to what’s to come, but mainly that it cuts down on frequent relapses. A new disability feels like a loss or grief and it’s a huge adjustment. My mind wants to do so many things everyday, but my body can’t follow all that. Everything I do now is limited and much harder like taking a shower (I use a shower bench)-it’s the act of washing hair, body, etc. is exhausting and afterwards, I’m ready to lie down. Making myself a meal is tiring, especially in the scooter that takes about 15 scoots back & forth from fridge to counter to sink to get things I need to make the sandwich or put stuff away...Ugh!

Thank God my hubby makes many of my meals right now and has been cooking dinner every night for the past 6 months-What a saint! I used to enjoy cooking and baking, but it takes too much energy out of me now.

Tonight my hubby, son and I are invited to our neighbor’s Christmas party. I was excited other day when I got the invite, but now in later afternoon I have the bad fatigue, and less physical strength that stays rest of day so I have to lie down. And now I don’t care to go. Guess I feel more nervous going to parties now or an event because I have to consider how soon I can sit down, which is usually in 10 minutes, lol! If you can relate to this, I’d love to hear from you.

It feels isolating at times to deal with MS. Especially adjusting to new physical disabilities or whatever disabilty shows up.

It’s difficult for family and friends to fully understand what we all go through daily. I know MS symptoms are different for each person. Some people (small %) don’t struggle with hardly any symptoms or zero, which is a mild case. Then the majority of us struggle with some intense daily symptoms or have it severe.

Thanks for listening to me today. It helps greatly for me to get out this mixed bag of emotions that swirl around in my head and I feel comfortable to do it here.

Nikki

38 Replies
oldestnewest

Just remember you are not alone. I also get those days when I feel great in the morning it get past 4:00pm and it all changes I get tiered. Do you use a ROLLATOR, cane or a wheelchair don’t get like I did and say I don’t need that there is nothing to be in barest about useing any one of those see what your insurance covers. Just be careful in what ever you do

Try to enjoy the holidays.

nicoly3467
nicoly3467
in reply to ssdw1958

Hi, thanks for the tip. Yes, I use a cane with 3 rubber prongs on bottom for better walking stability and sometimes I get looks from people who may be trying to figure out what’s wrong with me, but oh well; Sometimes I get asked. I use a Mobility scooter at home when fatigue hits or when my legs fizzle out. Got to order an electronic rack/lift for back of my car then may give me more confidence to drive more because I can take my scooter with me. Just tried other day to use a rollator at a store (Michael’s) that doesn’t have scooters and went well. I sat down on little seat in aisles to look at stuff, then walked to next aisle. I was exhausted when I got home, but I was so glad to get out.

Nikki

ssdw1958
ssdw1958
in reply to nicoly3467

I am so happy that you are using any and all equipment that you have like I said I do use my ROLLATOR at home and when I am too tired to get from one place too another I will ask my husband or son to pull me to my recliner chair that’s when I am sitting on the chair part.

I had an old man give me a dirty look when I could go to the shop and do my shopping 🛒. Because I was using a handicap parking spot. I said to him, just watch me walk and you will see why I parked there. Well I walked about 10 steps and turned around and I said do you see why. He just turned and walked away.

People are just too rude. I would love if I could walk 50 feet from the place to where I was going. Don’t let ignorant people get you down.

I hope your have a great day!!!

greaterexp
greaterexpCommunityAmbassador

While my fatigue is not as serious as yours, I understand what you're feeling. Sometimes, just the thought of having to do something later in the day makes me feel a little irritable because I know I'll be tired then.

I hope you can still enjoy the holidays and get the rest you need. Thank you for sharing your thought and feelings here. This site helps me feel much less alone with my MS.

Thank you so much! I’m so happy with this online support group-such caring people. I’m glad it’s helped you too!

Nikki

Hi Nikki you are not alone. I get up every morning and the first thing I do is shower. A lot of those mornings I cry in the shower, either it’s depression or the force of the water hurts. Some mornings there are no problems. What was once a 15 minute event is now a hour. By the time I get dressed, it’s time to have breakfast and take my medication. Once the medication has clicked it, then I choose what chore I need to do, I do it, then that will be it for the rest of the day. Come 4 pm I have nothing left. I didn’t even make a Christmas Eve service this year, I went to bed. I could not face lots of people and the effort of going. I am in bed most nights at 6.30 pm. I don’t socialise in an evening anymore, if asked I just say no, my hubby goes on his own. This forum helps me a lot, I can come on here and socialise with people who understand. Anyway, enjoy the holidays blessings Jimeka 🎄

nicoly3467
nicoly3467
in reply to jimeka

Hi Jimeka-I can relate to your daily schedule. Depending on what I’ve done in the morning physically around the house or going to an appointment, I can fizzle out as soon as 11AM onward. But each day varies, it’s strange.

This is the place to vent, rant, ask, etc.

I take Tecfidera and it has worked well for me. Before I was on it my body felt like I was always carrying an elephant

We all have those moments where we are excited to do something but the the day of our body betrayal begins Rest up and do what you can and try not to stress

Merry Christmas and Happy New Year

I’m happy to hear that Tecifidera has worked well for you! It’s been a good experience for me so far, even though it’s been only been two weeks. More to come...

You're not alone. ❤🌷

U are definitely not alone my love xxxxxx ❤️

nicoly3467 In 2019, I wish you neighbors like mine. Since I can't leave the house, they come here. On Thanksgiving and last night, Christmas Eve, they came here. They bring the food, clean up, and then leave after a couple of hours. This time of year, my fatigue isn't debilitating, but like you, my energy is highest in the morning and gone by late afternoon. I have finally learned that I can accomplish only one major task each day; the difficulty is accepting my limitations. The MS family understands, and it sounds as if your husband does as well. Don't press yourself to do more than you have energy for; over doing anything often leads to days of doing nothing. Take pleasure in what you can do!

nicoly3467
nicoly3467
in reply to goatgal

That’s great advice, thank you. It helped me a lot when you said, you can do one bigger task a day and that’s true for me too. Some days nothing but rest.

Nikki, I am sorry you are in this circumstance. I can only say that I can relate on so many levels. I suffer from depression, treated, but still a daily challenge. I know what fear is. My dear husband of almost 20 years divorced me in August and I now find myself alone trying to cope with life with PPMS. I find great comfort here on the forum. You must press on, no matter how bleak you feel. This disease stinks! But perhaps there is a cure coming. I hope you stay in touch, what a wonderful person you are. Love, Kelly

GDW72
GDW72
in reply to Amore55

Hi Kelly, I hope you are having a wonderful Christmas! Much love to you and yours!

Kendra😊

nicoly3467
nicoly3467
in reply to Amore55

Thanks so much for the nice comment.

I agree, trying our best daily is what we can do.

Jesmcd2
Jesmcd2CommunityAmbassador

Hugs nicoly3467 MS sucks the life out of you sometimes. And can be very frustrating!! And how I wish I had the answers for you!

Hang in there! And on your good days, do what you want! And your not so good days, lay down with a book on tape?

Just know we get it!🤗💕

J🌠❄️

nicoly3467
nicoly3467
in reply to Jesmcd2

Jesmcd2-Thanks so much for your helpful reply.

Jesmcd2
Jesmcd2CommunityAmbassador
in reply to nicoly3467

nicoly3467 I'm so glad that you went to the party! And were able to have a good time!

Have you talked to you health care team about being so tired? There are meds that can help you with that. I know I would be lost without them! 😂 But I still fizzle out in the afternoon.😴 There are a lot of us here that take something for it.🤗💕

J🌠☃️

I can honestly say that my husband struggles with things like this on a daily basis. The things he loves to do that keep his mind off of his symptoms is the very thing that wears him out. He has been doing a lot of wood working lately and although it is therapeutic it also makes him very mentally exhausted which then leads to physical exhaustion and then frustration and anger. Then he is down in bed for 2 days. It’s a vicious cycle and although I have no idea what he is truly experiencing I try and stay as compassionate as I can for him. I also realize that when his frustration is directed towards me it not him being in his normal state.

nicoly3467
nicoly3467
in reply to GDW72

Wow that’s exactly how MS fatigue is and I can see how he’d be frustrated because he wants to keep going and that’s how I feel with my photography. I can do a little then rest but not overdo it. My hubby is compassionate too, which helps and sometimes I can get real cranky when I hurt badly and fatigued then I react to little things that can upset him or my son. Yes it is a vicious cycle.

Nikki

Nikki, I can relate to your frustration and even anger. All the things you are experiencing is normal. I often long for my life as it was 4 yrs ago. I was working and loved to socialize. Now it wears me out just thinking of being around a large (20+) group of people. I also have anxiety and depression. A lot of people on this wonderful site understand...don't be afraid to let us know how you are doing and rant and rave here...it's a safe place. You have a wonderful husband who tries to take the physical load from you, but no one can truly understand the mental and emotional effects of MS. I pray that you can have a wonderful Christmas with your family. Take time to rest (which I don't do well) so the next days aren't spent recuperating from today. Blessings to you and look forward to more posts from you! ((Hugs)) from me to you!

nicoly3467
nicoly3467
in reply to PWilli

Hi PWilli,

Thanks for your sweet message and I appreciate the validation. Hope you have a nice holiday too and a relaxing time.

I did end up going to my neighbor’s party last night for Christmas Eve for about two hours and had a fun time! That was the first big social event I’ve gone to since early summer. It gave me more confidence to keep trying for social gatherings and/or meeting up with friends again sometimes-when I feel well enough. I gauged how I felt at party and when I started feeling more physically fatigued, that’s when it was time to go home, which is right next door...Lol. Glad I went. Thanks for your support!

Wishing you a Happy & Healthy New Year 2019!

Nikki

PWilli
PWilli
in reply to nicoly3467

I'm so glad you felt well enough to go to the Christmas Eve party and enjoyed yourself. And pat yourself on the back for realizing when it was time to go before being totally wiped out. Merry Christmas! 🌲🌲🙏

Pam

Sometimes its hard to imagine, based on those brochures of happy MS patients, that there are people out there suffering the same emotions that you are. But rest assured, there are a lot of us out here. When I have to go to a party, I immediately look for the nearest chair on the outskirts of the noise. I get anxiety just thinking of going into all that noise; my MS seems to short circuit when overwhelmed by chaos. Also, it would be nice if parties were in the early afternoon so the fatigue wouldn't have time to set in so deep.

I follow a blog called Positive Living With MS. It, in conjunction with this site, has been an amazing help to my mental health. The author suffers from debilitating MS but has a way to put a positive spin on events in her life. Here is a link to the blog. positivelivingwithms.com/

Hope all gets better.

PWilli
PWilli
in reply to KelliJ

I get frustrated seeing all those people on the covers of MS magazines and reading about them literally climbing mountains and running marathons. (I had no desire to do that before ms. Lol) My counselor told me to quit reading those articles because that's not me and it was only depressing me! So glad I have this site...the previous site I was on was like those magazine articles! Thanks everyone for the support we offer to each other. I'm going to check out the blog. Thanks for sharing the info Kelli. Pam

nicoly3467
nicoly3467
in reply to PWilli

I know what you mean about MS magazine covers featuring mostly athletes. I think some of these people have a mild MS case with hardly any symptoms or zero, which is wonderful, but not true for the majority of MS people. Maybe the magazine is trying to instill hope for everyone. I could relate once to an MS magazine cover with a man who hikes lightly with special trekking poles that I thought were cool, but in daily life he uses a cane. I don’t hike, but this was something he found that worked for him to be active.

Great advice what your counselor said. For me, it’s seeing my friends and family on Facebook and all the fun places they go to often, which I’m happy for them, but makes me sad at times, especially when I haven’t been anywhere for several months except a grocery store-woo hoo.

I like to check my own FB Page often and see updates. I post my pets a lot..Lol or a family outing or meetup with my friends sometimes. My hubby told me FB doesn’t portray anyone’s real daily life though with all the ups and downs, but just a happy moment. I agree.

Nikki

nicoly3467
nicoly3467
in reply to KelliJ

KelliJ,

Thanks for your nice reply and the helpful link-I’ll check it out. Glad this has helped you so much and this online support group.

This is the “best” online support group I’ve ever been on. It has the most caring people dealing with MS who understand and offer encouraging words & support when I need it most. I wish one day our group could meet face to face, but I understand this is very difficult due to us living in different states across the US and prob all over the world. Especially,

I understand about the mobility challenges going some place, but a special thought of how much I like all of you.

Happy New Year 2019!

Nikki

greaterexp
greaterexpCommunityAmbassador
in reply to KelliJ

She's a real hoot! It's hard to read some of her posts and not laugh out loud.

I started seeing a therapist not too long after I was diagnosed. He immediately told me he would be worried more about me if I WASN'T anxious about having MS. It's perfectly normal to be stressed to be diagnosed with an incurable condition. Just having him tell me that helped ease my stress some. I wasn't abnormal! (At least about that!) ;-)

How true that is! Thanks...

nicoly3467 You are definitely not alone. It sounds like you cope as well as you can. I too, find that if I have something to do, I do it early in the morning. I have a todo list, and many times, this list hangs around for a month before it is all done. When I lose this todo list, I consider it as a queue that I have nothing to do. And so I relax!

So, take it easy, and do only what you can do, at your pace, and on your own time.

Carole :-D

Nikki & All respondies

This has been a great series of responses.

If diagnosed MS patients don't have your same feelings they are very lucky and hopefully will never get to our stages.

It's wonderful that you have a husband that provides that kind of support system. My wife is the same way. Almost over protective.

Thank you for your rant. It has occupied 30 minutes time to get my thoughts off of being down.

Thanks,

Jeff

nicoly3467
nicoly3467
in reply to JTZES

Jeff-so glad to hear this helped you feel uplifted.

Nikki

nicoly, a very warm welcome to this awesome, Funny sumtimes MSer Warriorz Family! I was just DX'd in May of this Year, If u have Kindle. From Amazon, I'm reading a real awesum find of a book, "Healing Multiple Sclerosis", by Ann Boroch, really, good info, facts & grreat Recipes... She too had M.S. & died from it, & was told to come back here & help heal others... Try it out, i was DX'd PPMS, & just by moving away from the toxic-black moldy place I was in, & diet chnge, & excersise, is reversing it a little... & she (Ann) also has a Cadida overgrowth cleanse, which I have started & it is really seeming like it's helping, hugs, 💐& Prayers, & Many Blessings for ya!❤💗❤---Jazmine🌹Rose💜

Hi Jazmin Rose,

How funny I have the same book. I enjoy it too. I’ve not completed it yet, but yes, she has great advice on some diet changes which I can do and won’t starve, recipes, and various relaxation tips.

👍good to hear nicoly!💗 I was on Youtube trying to look her up, & she was on there until last year 2017, I have very sad😭😢News about her, Ann B. Was murdered for speaking against Vax's(vaccines)), well she's def. In a way better place now! & we'll see her again on the shores of Glory!👍😍😉☺😘💛💙💘💞💖💕💓Love Ya!---Jazzy🌹💜

Oh my God, this is tragic news about the author Ann. How horrible that this happened to her. But thanks for letting me know or otherwise I’d have never known. May she Rest In Peace.

You may also like...