Trying to keep up with life

[AriD]

It's been so hard lately to keep up with everything. My fatigue is much worse. I know my schedule is way too much. Working full time, babysitting at least twice a week for my grandchildren, and all those appointments and tests.

Some days it's so hard to keep walking. My youngest daughter just graduated college and suddenly got a wonderful job in Manhattan. I'm so proud of her. We had to very quickly move her to NYC though. unfortunately, my other children were unable to come and help. One was away on vacation, one has a newborn who was very sick in ICU for a while, and my other is due to have her baby this week.

I tried to keep up, hired some movers to get things to her new apartment but in the two days I had free, we had to get a lot done. I didn't want her worrying about me so tried to hide all those awful symptoms that worsen the more fatigued I got- leg spasms and weakness being the worse. Never mind the emotional toll of her moving away, saying goodbye. And I'm so happy for her so wanted to be upbeat and enjoy the little time we had. Make sure she was settled in and had everything she needed to start up her career.

I'm back home now but WOW do I feel bad. Can barely walk and so so tired. I don't want my kids worrying so am trying to be upbeat and hide how I am feeling. I was supposed to spend the day with my expectant daughter but made an excuse so she wouldn't see how bad I'm walking. Which makes me feel awful since I know she needs help now.

I really hate this disease!!! As a single mom my whole life has been devoted to helping my kids and now I feel like I can't even give half myself. With all we have coped with over the years, I'm so happy that my kids have found wonderful spouses, careers, etc. and don't want anything like my problems to cause any stress for them

Anyway. I'm rambling now. Just feel like I'm failing in everything. Can't keep up with it all. I've never been a quitter, keep moving no matter what life has thrown at me, but MS makes that very hard. How do you cope? If I push too much then try to find a rest day is that so bad in the long run? Who knows?

[Boymom123]

You are amazing

You have my admiration - being a single mom with MS and you have done so much for so many....you are an inspiration. But now I think it is time to ask for help. Yes, your kids have their own lives and have their own stresses, but you cannot do it all on your own. If you don't want to ask for help, then please at least be honest with your kids. Tell your daughter that you can't go today - you overextended yourself and are exhausted. You need to take time to self-care. You aren't a failure - not even remotely close to one. You have a disease that is kicking your butt right now and you need to care for yourself - not everyone else. (((HUGS)))

[JerryD]

Ari,
You are giving a lot and others around you may not know it, because MS is the way that it is. I salute you. You are doing for others that you love. What is better than that! Go as long and far as you can! Think about the rest of us that can't do ike you do and feel glad and grateful for the things that you can do. Bless you and keep doing the things that you can do! As long as you can. Good luck

[REG53]

I would be tired doing all you do even if I didn't have ms. You are an inspiration not a failure. I agree with Boymom tell your children when you need a rest and ask for help.

Hope you feel better soon.

[Seasha]

You have my admiration - being a single mom with MS and you have done so much for so many....you are an inspiration. But now I think it is time to ask for help. Yes, your kids have their own lives and have their own stresses, but you cannot do it all on your own. If you don't want to ask for help, then please at least be honest with your kids. Tell your daughter that you can't go today - you overextended yourself and are exhausted. You need to take time to self-care. You aren't a failure - not even remotely close to one. You have a disease that is kicking your butt right now and you need to care for yourself - not everyone else. (((HUGS)))

I couldn't have said it better than the advice Boymom gave you!

Ari, can you afford to take a little time off work for some much needed R & R? A day or two just to pamper yourself and recharge? I was once in your shoes. Working full time, seeing my 3 youngest adult kids graduate and off to their own adventures, helping to move them, the emotional toll of empty nest, etc. I didn't realize how much I had overextended myself until I landed in the hospital! (and I didn't have grandkids then to babysit like you do and I had help from my dh) I mean - I thought I could still do it all. It was a life lesson for me....After that I would take a day or two off work when I saw the signs of becoming overwhelmed and instead of calling it a sick day, it was a wellness day

Please practice self care like Boymom said. It will do you much good in the long run.
Take care

[AriD]

Thank you for all your kind responses. I really appreciate them. It's nice to be able to talk about how I'm feeling without burdening my kids. And know people understand.

Everyday I am grateful that I can still walk. I feel for each and every one of you that has forever lost that ability. I have lost it for a few months sometimes and know how hard that was. My neurologist wants me using a scooter. She asked me to read "When Walking Fails" to help cope with my physical decline. My mind won't accept that til I have absolutely no choice.

My daughter is a nurse also. She's the hardest one to hide my symptoms from. She told me the other day that she's very concerned that I'm heading for a " major relapse" again. Told me yesterday that she feels I'm heading into another major relapse. She can see me struggling despite my best efforts to look "okay" She's asked her mother in law to help with some things in order to give me a break. I appreciate her attempts to lessen my load but this makes me feel so sad and inadequate. Forces me to face a reality I can't accept right now.

i get the whole take a break thing. I really do. I did schedule a few days off in August so I'd be available to help with the new baby. No work anyway. And at my PT's strongly worded advice, I am looking for less demanding nursing jobs. The reality of it all is so hard.

Thanks again to each of you for your support.

[rdmc]

With all we have coped with over the years, I'm so happy that my kids have found wonderful spouses, careers, etc. and don't want anything like my problems to cause any stress for them

First of all, kudos to you. It is wonderful when your kids are grown and have lives and families of their own.

But I disagree about one thing. You contend that knowing about your issues with MS will cause stress for your kids.

You said your daughter who is a nurse knows you're having issues. I'm sure she's communicated this to her siblings. We try to be "the great pretenders" with our MS. Cover up our problems, put on a brave face and soldier through...and I'm not saying that's a bad thing. But chances are we're not fooling anyone that's close to us.

I didn't used to tell my son and DIL much about my MS (not that I can hide the symptoms) but I can hide the fatigue and the pain. We had a talk about it, and they communicated to me, that they wanted to know if I was having a rough patch with the MS....they didn't want to be "the last to
know." The "last to know" phrase was applicable because once I was hospitalized while they were on vacation and I didn't let them know until they returned. That didn't make them happy

You've raised good kids, they have supportive families of their own, so maybe now it's time to trust them with some truth about your bad times. I don't think it will cause them "problems" , you won't have to try to pretend all's well when it isn't, and I know it will not cause them the stress that a major relapse would. I'm sure they're "the children of their mother", i.e. you've given and given to and for them all their lives, they will want to be able to give back to you when you need it.

[AriD]

I get what you are saying, really I do. Last time I was hospitalized, I was so worried about never walking again and what a burden I would be to everyone. My family, friends and especially kids were all wonderful in helping me through all that. With a lot of work, meds and "luck" I am independent again although on a much lower scale
I don't want them to be the last to know either but don't want them being overly worried about me either. Who knows what tomorrow will be like. And, if they worry too much then they won't ask me for help if they need it. It's important to me to still be there for them. It's part of who I am and losing that would just be so sad.

[frosty123]

losing that part of yourself is sad

I thought my heart would break when I had to decline babysitting my sweet 15 month old grandaughter last weekend....the thing I hate the most about MS is that it makes me feel like a selfish person because I have learned that I do have to put my needs first or pay a hefty price. Peace.

[pennstater]

AriD - I think all of us worry about being a burden to loved ones. Alot if us hide what we can to prevent them from worrying.

As a single Mom, I am sure there were times you were alone and all on you. You somehow summoned the strength to fight on. That strength rubbed off on your kids. Give them the benefit of the doubt that they can handle more than you think.

I think parents always want to make their child's lives easier. My parents often hid things for the reason you state. In the end, it left us wondering why we didn't see things, did we do enough to help them, did we get too caught up in our own life, etc...

I think an open dialogue is the most important. Let them know what is going on, that you will be there always for them and will be honest about when you can or can't do things, but that they should always ask and give you the choice. Likewise, there are times you may need a little help, and they or may not be able to help. And that is ok too. No guilt, no hurt feelings, but a continuous open door.

Frosty123 - I can only imagine your heartache. I am so afraid to hold babies since I drop things often, trip, walk into walls, etc. So now, only when sitting down. You are in no way selfish to take the time you need for yourself. Giving when we don't have anything to give is a no-win for everybody.

[AriD]

Thanks Kathy,

Things have gotten much worse since my post. Having seizures now, two courses of steroids because first did nothing. Can't take Ampyra any more because of the seizure risk. May have even been the cause of them.
Hoping to get this under control or work and babysitting is over. So scared

[lindaincolorado]

Hi AriD, I agree with what you've been told by others.. taking care of "you", too and sharing with your daughters.
I may have missed if you are on a DMD-are you ? I have been on Tysabri for 10 years-it has been my G-d send I know you have mentioned Ampyra, it is for sx. I, too, am a grandmother-oldest 20, next 9 and then 7. I do what I can when I can and figure out how to do it best "for me" .

You are AMAZING as first stated by Boymom123

[AriD]

Hi Linda

Thanks for your kind words. Very hard for me to give in to this disease. I have lived a life of go go go. My grandchildren are little 4,2,1,1, and 3weeks! And another on the way. Very busy!

I take betaseron as DMD. Ampyra was for my leg weakness and was helping me get through 12 hour shifts at work. Because it has a high risk for seizure and I'm having seizures now, I can no longer take it which stinks. Once I get these seizures under control ( had oral steroids last week, now getting iv and anti seizure meds) I want to get back to work and life but without Ampyra things may be more difficult. Everything is slowly getting worse even before this latest relapse.

I have talked to my kids about everything-they know I'm on leave from work anyway. Just don't want them hovering and worrying. Need to keep as much independence as possible. It's what keeps me going.

But grandchildren are wonderful aren't they? Love them so much.

I truly appreciate everyone's support here. It helps so much.