Tough time - how do I do this??

[MomtoMiracle]

Hi there,

I just got out of the hospital a few weeks ago from an MS flare and am totally overwhelmed. I feel like stink - soooo exhausted - and have a special needs kiddo and a toddler. Older child has all sorts of appts. and the toddler is, well, a toddler!

I just want to sleep!!! Taking Adderall, Provigil makes me sick. I feel so ill equipped. I know God chose me to be their Mama and I am sooo blessed - it just feels like they'd be so much better w/ a healthy mommy, ya know? My husband is the best, but it's a really busy time at work.

How do MS moms w/ special needs kids do this? I'm supposed to take the kids a few hours away next week b/c my oldest has an appt. w/ a specialist. My SIL is flying in to drive w/ me (God bless her!), but there's still the kids and my wheelchair, and all the details/paperwork.... sorry, I'm just so overwhelmed.

Thanks for listening...

[sunshine008]

hi

I don't know exactly how to do it, I guess it's just that one foot infront of another thing. I know it isnt easy... you def. have your hands full, and it's ok to let yourself feel what your feeling right now I think.

I hope they treated your flare and it's calming down now. Are you in a wheelchair all the time?

I too have a wonderful special needs child and I often feel overwhelmed, and at a loss. Yet than i remind myself that it's ok, i'll get thru it, as will the rest of my kids.

I honestly take a long time out when i'm feeling totally spent. It can be just sitting in my room with a glass of water for a bit. I find taking a time out for me is the only thing that allows me to fill my cup back up so I can keep on going at times.

sending you hugs, take your time with you, and be kind to yourself you just got home. try to stay in the day without thinking about all you have coming up. I do that and I wanna run screaming! btw your kids are lucky to have you..... yet you already know that

I hope you feel better

[mjan]

First of all HUGS to you~and so sorry for ALL you are going through. I remember raising 3 kids in poverty while my symptoms were emerging and no DX or help yet.

But to have a special needs child is enough stress..but God Bless for how much you care and how well you are trying.

Is there an agency for the special needs child that helps with respite? Also contact the MS society and ask if they provide any kind of help as well.

Also.. do you ASK others for help? Church members, neighbors, family? If they do not know WHAT you need and WHEN often they think you ARE handling this ok.

ASK, Ask again.. and PRAY that you will be provided the help and resources you deserve.

Lastly, if you look in the Nutrition part of the forum, you will see the supplelments folks take for fatigue. I take them and yes they help. NOTHING is a cure..but its helpful w/o side effects.

Here's another HUG hon~

Jan

[babygirl_vic]

I'm sorry you're having a flare!! I too have a special needs child. My youngest (5) is Autistic and my oldest(7) is bi-polar and I don't think there is a week that goes by that one or all of us don't have appts!!

My moto is "take things one second at a time!!" I too get overwhelmed!! But I just tell myself "this too shall pass" I know I can't control everything and usually not anything!!

Do you have outlets for childcare?? I don't know what I would do if it weren't for my in-laws who don't work (retired) and they help me tremendously!!

I don't know what special needs your child has, but some insurances pay for a "sitter" or "home health" nurse/tech to come into your home to give you a few hours to yourself and/or to give baths, and even do housework.

I know it is a great help just to get a small nap, check with your childs doctor and Human Resource Dept. about the services offered in your area and what your insurance might cover. Your child would cover.

Hugs to you and hope you get to feeling better!! Hang in there!!

[MomtoMiracle]

Thanks everyone

Hi there,

Thank you all for your wonderful support. In typical MS fashion, I reached out and posted - and then FORGOT. Oops!! Have to giggle at myself. At least I didn't leave the stove on.

You are all so right. It's one second at a time. And my kids are such blessings. I don't want to wish away their childhood b/c it's hard.

mjan - We have reached out many times, but sometimes people forget just b/c their lives get busy. So I took your advice, sucked it up, and sent an email to our church family. Someone has my girls today so I can rest/get stuff done/meet w/ the PT. Praying that God sends us help on a consistent basis.

Also looking into respite care and other such things. After PT comes out and does their assessment, OT can come out too.

Sunshine - thanks so much for your words of encouragement. I can tell others it's okay to feel, but then I forget that for myself. The reminder is good. And it's good for me to remind my 8 y.o. that she can feel too - not just put on the brave face.

Babygirl - you have your hands quite full yourself! I've been thinking about you quite a bit w/ those 2 special needs kiddos. Your testimony was encouraging.

My 8 y.o. was born a preemie (less than 2 lbs.) and there are residual GI, nervous, pulmonary, cardiac issues. We had to pull her from school last year and homeschool. We also have a beautiful toddler who is very loving and curious. Very blessed, it just takes a lot of energy to keep the balls in the air. I need to remember that God's really holding them and I'm not juggling.

God bless you all.
Me

[cosake]

Sorry that you are having such difficulties. It is hard enought to deal with our own issues let alone those of our children. My 15-yr old son has Tourette's and ADHD. Some days are a challenge, but I am thankful things are on the mild end of the spectrum for both diagnoses. I'm sure it is much more difficult for you - but I can sympathize.

Something that helps me when I am stressed out is to make a list - of things that need to be done and things that need to be "packed" or taken with us, such as to the appointment you mentioned. Then I feel good when I cross something out !

Once I've written something down, I can get it out of my head and not worry about it anymore.

Glad that you have reached out for help. It is so hard to do sometimes.

[tommylee]

I feel like stink -

Not a mom just a dad with one very easy no special needs son and I still "feel like stink".

I don't know how you do it?

Pray for strength is the best I can suggest.

[Lendi]

So, so sorry you're being hit so hard in life right now. I have a tough time and don't even have children at home. I don't know how your MS'ers who do have children at home manage it all. My heart goes out to you.

[mtnwillow]

After reading your posts, I can honestly say that I feel blessed that MS did not strike me until my children were finished with college and living independently.

[MyGirlsMom]

My heart goes out to you and your family! I wish I had the right words to say, but just keep taking it a day at a time....sometimes a minute at a time!

And post often...to relieve your stress with people that care and understand!

Many blessings to you!

[babygirl_vic]

I'm glad you reached out and asked for help!! As Mom's we want to think we are Superwoman and can handle any and everthing!! Exspecially with special needs children, it's hard for us to let others help us!! For me, Before MS I had to control everything!! God has definatly "broke" my control urge!! LOL


Just remember you're not Superwoman and can't handle everything all the time!! And everyone needs a little help now and then!!

[REG53]

Hello MontoMiracle,

God Bless You Too and I am sorry you are having so many problems. Your children are blessed to have a Godly mother and you are truly blessed.

I will say a prayer for you, and I hope you feel better soon.

[MomtoMiracle]

Love this board

Hi everyone,

I feel like such a needybug... I'm rereading this post and just soaking up the support. God bless you all.

This is a season and today is the only day that my children will be this age. I try and keep that in mind. It will not always be like this and I need to enjoy the good parts. It's just hard... being a Mom from a bed when I'm too pooped to do anything else.

Thank you all.

[spring]

ideas....

Maybe on the "bed for you" days ( man, do I relate !!), you could keep a special tote bag of toys/crayons/paper that your kids have never seen ( change the contents occasionally-dollar store time) ! Only let the children see the bag when you need to rest; keep it in your bedroom.

Get one of those "breakfast in bed " trays; let your kids color/make clay stuff etc on them while you "sleep" (LOL, well, let's just say "rest." )

My one and only is 28 yrs old; she just got married on Saturday, and I was lucky enough to walk down the aisle. but arts and crafts would keep her busy when she was little .

Hang in there !

spring