How does everyone deal with NOT playing with their kids outside? I just got diagnosed with this in October & I have not had my son outside. It's breaking my heart. I feel like I can't do the things I used to. I used to bring him to the local parades & early morning walks with a slight breeze. Now its colder & I just can't. Even with a scarf it brings pain. I get pain from walking from room to room. I just think this is not fair for him or even me. He is turning 3 this month & his memories are just beginning & he wont remember all the things from before, cuz who remembers things that young? I have pictures sure, but he will look at his life & think wow, mom didn't do anything wiht me or take me places. I'm a single mom who works part time from home right now. I was hoping to get a full time job once he started head start- next year & i had all these hopes. now i feel like i can't do any of that. i feel like i am really grieving my life. im just so sad. it hurts my heart.
It will get better, that's the part you need to remember.
Your son will remember the time you spend outside on calm summer days, the time you spend at the kitchen table making silly crafts, the time you spend on the couch talking about everything under the sun. He'll remember the remission periods (that can last for months or years with very little pain) when you are an active mom that takes him everywhere.
He'll also remember the bad times, and it will make him a better person. He'll remember holding your hand in the emergency room, listening to you cry from the pain, and it will teach him compassion and responsibility in a world that needs more of both. He'll learn self-discipline when he asks for the impossible and sees the hurt in your eyes when you tell him "No, I can't."
You won't always be where you are right now. I think every single one of us feels what you are feeling when we are in crisis, but the pain passes and the hope returns. You'll have a life, and it won't always be the one you imagined, but there is no reason to think that it will be less somehow.
I am so sorry and i totally understand. I had my first symptoms in spring and it severely altered my summer. I am the proud Nana of two beautiful grandsons and I also hope their memories will not be of a Nana who can not read them bedtime stories or play outside in the snow. I am trying to come up with new and fun things to do which will not create more pain for me and yet be fun for them. I suspect you are doing the same. Your heart is good and your son will easily recognize all the love you have for him. I pray you will find peace and strength for this journey.
In order to walk my dogs - I got prescription lidocaine patches - put on face - to numb nerves for up to 12 hours
- and put scarf on head//neck/face ---
I'm pain free after surgery now - but still have ptsd of the wind when I walk them now
- a year later!
Are you on meds? If they aren't working, maybe re-visit your doctor to up your meds. I am pretty much under control, so I can take my 3 yr old grandson out to play. Good luck!
You still on meds to do that donna?
Hugs to you. I know it is very hard when your not feeling like your self and have kids. I feel like a terrible mom at times. My youngest is now four and she has no idea of the things I would consider normal mom things like my eldest who is almost 13 (sniff sniff). It is an adjustment for both of you. Believe or not it will get better. There is just no way right now we can do our family walks, the cold air is just brutal for me. On the other hand we now do others things. We play Legos a lot not, bake cookies together, color, and be silly when I’m having better days. It’s okay to have a bunch if different feelings about the changes you and your son will need to adjust to. As some one else said before he will learn other lessons like compassion and patiences better than his peers. Try to find the bright side of things, and embrace the better times you get to share together. Lastly things will get better. I know it is hard to let go of the mom you wanted to be, but you find your self at one point to be an even better example for your son than you ever thought possible. It just takes some time and is a work in progress for those of us whom still have kids at home. Hugs again to you and I hope you have a great day with no pain.
Thanks. I guess I sometimes feel as if i'm feeling sorry for myself but i just got this in mid october & im still adjusting. it really is heartbreaking for me. he will ask to go sledding or go outside to build a snowman & ugh, it kills me. i just feel like living in cold north dakota should be easy for me since i was raised here & had every intention of sharing my childhood fun with him. i only ever wanted to be a mom & now its just hard. i dont have alot of help & not a whole lot of people to talk to. my friends have vanished & i barely get texts from them & when i do its always always about them. they never ask how i am or if they can take my son for a few hours to help me out. now i need to get two teeth pulled & im scared to death & i think now i have a bit of tmj on top of everything. i just dont understand how this all happened to me. sometimes i feel like there is a black cloud above me. i get angry at god & i feel like i have no guardian angel lol. i feel like since i got graves disease my thyroid has ruined everything. the only thing i love is my son. i would do anything for my little boy & i just want him to grow up with compassion but i dont want him to grow up thinking he has to help his mom out all the time & i dont want him to feel like he is the parent & not the kid. i dont want him to resent me because of this disease. i was told christmas day by my disabled mother that she has resented me for 35 years. i'm 37 so that was nice. sorry, i totally went crazy venting on here.
It’s okay. It takes some practice and some out of the box thinking, but you will find a balance between being ill and being a mom. Really it is work in progress deal. I’m still working at it. Don’t fret over the friends who are into them selfs, you can and will find some that are understanding and helpful to you at some point. At this point I’ve go a few friends but the ones I do have are tight nit and are very understanding. It may just take some time to find these friends for you. But don’t give up hope on finding these people they are out there.
There are some many different feelings that you will go through, and its okay. It’s rough sorting them out, and again this is work in progress and take time. Vent, whine, cry, and get them all out here if you need to. This is our safe place to do this. Have you look at the subgroup The Stages of Griving? Here is like to the group
http://www.livingwithtn.org/group/the-stages-of-grief
It might help you to work through some of your feelings to know these. Just having tn is a lot to have and it very normal to grive for your life pre-TN. You don’t have to have all of the feelings listed or my have others not listed, nor go through them one after another. These may time take to work through and for most it is a work in progress again. You might back step on one of these or a few. In any case it may help just reading these and knowing what you feel is perfectly normal.
Because you are so aware of what you want for child and his thoughts and memories this is something you will work for him and his knowledge of your illness. You might even google to see some advice on how to raise kids when chronicly ill. Then again your mommy senses are also going to lead you in the best direction for both of you. Know what I mean there? Don’t worry to much about the future but more at what’s on your plate now.
It sounds like you have a lot of things on your plate. I can not say anything to help you with your mom, other than I’m sorry she feels that way. Dont let her nagetive thinking get you down. You deserve better than that and are better than that. (((Hugs))) to you though. I’m sorry your mom would say something so hurtful and mean to you as that and again (((hugs))).
It will be okay, and you are doing a gray job as a mom and are a great mom. Try to find the positive in each day even if its just something small and focus on that. Keep posting your vents, crys, and whines here that is what this site is for. At some point you will see it that it gets better. Till then we’re here if you need us.