:( Sorry, I am in a rather bad/sad mood and just need to vent...
I feel so guilty not having the energy to even read to my two little toddlers at night after work. On the weekend when I don't work, I cram so many projects/family events for them that come Monday I am glad to get back to work to take a breather. I don't have the option to not work. I need my health insurance to not only cover my SS, but my upcoming kidney transplant. (whenever that may be)
My hubs works many extra hours and is tired when he gets home from work too. He does try to help and I know he "thinks" he understands how I am feeling. Just this morning I was in tears because I am so tired. He said "I'm tired too". I just wanted to rip his head off that spilt second.
I want to scream at the world because I am frustrated with myself. I keep thinking if I just can get a kidney transplant this summer....the cellcept (which I am on low doses already) will keep me nt only from rejecting my kidney, but keep the darn SS in remission because of the HIGH doses I will be on.
I just don't want my kids to have a "sick" mommy.....which is what I feel right now.
Thanks.
Oh Victoria! My goodness, you have very right to be upset, exhausted and sad! You have a remarkable amount of things to deal with. :o
I understand the guilt, even though I never left this house, I was basically absent from my kids lives a year or two back before I had been diagnosed, and had 3 surgeries in one year.
I wish I had someone tell me this:
There are a lot of things you cannot control, so you *must* focus on what you CAN control. This weekend craziness needs to STOP until you have recouped from your kidney transplant, however long that may be. . As in this weekend, no more unnecessary projects, parties, family events etc. Why add gasoline to the fire? The world is not going to end if you miss a party or don't paint the back porch or don't shampoo the carpet. The house will still stand, the sun will still rise the next day. You don't have to attend every function you get invited to, you don't have prove you are fine to everyone. Maybe you are the perfectionist type? Do you feel guilty for sitting still? Let it go and enjoy your babies in your spare time, trust me, they are going to be MUCH happier sitting around watching cartoons and eating a bowl of Cocoa Puffs with you this Saturday rather than running all over creation.
If you keep this up, you are going to be SO frazzled by the time your transplant comes that you may make yourself too sick and inflamed to even have the procedure! The healthier and rested you are beforehand will predict your recovery.
Your husband is helpful, that is great, maybe you can devise a menu and he can shop on Sunday so you aren't stressing out about what to do for dinner each night. Choose some specific functions he can perform so he knows he has helped enough. It's a lot for man to handle having a sick wife, it's very scary for them too.. Men are fixers, they like to be able to fix any problem that comes along for you and he can't fix this for you. There are a lot of ladies who go through situations like this and the man chokes, he balls up and becomes selfish and even abusive because he doesn't have a woman doing everything for him anymore.
If you don't have a loser like that, consider yourself extremely lucky!
Missy
Victoria, Mom guilt is the worse. Grab a blanket, get some crackers and lunch meat and juice, curl up on the bed with your two babies and have lunchables picnic while watching their favorite video. Your babies will remember you being there with them. Invite Dad to join all of you. You don't have to be the super soccer mom all of the time. Your children are still babies. You need to take care of YOU too. In our fast paced over achieving society we as moms feel that if our children are not involved in everything that we are failing them. Trust that your children will grow to be beautiful young people even if you do not run them to every activity every weekend. Take time to just be with them. Home should be a refuge from work not the other way around. Please take care of yourself. This coming weekend try a new routine. Rest, relax and enjoy your family. Roxanne
Hi :)
Mom guilt - women guilt - we seem to be born with it. It's like being told 'childcare' is a 'woman's issue'. It's not - it's a 'people's issue'.
Your kids are toddlers. They're not going to think of you as a 'sick mommy'. They just know you're Mommy. Your life might not feel normal to you just now but their life is perfectly normal to them - it's what they know.
I can totally understand you wanting to rip your husband's head off when he told you he was tired too. I wanted to rip my husband's head off when he was dxd a year ago with angina, had tests that showed ecverything looked pretty good, and said "you don't know what its like to be given pills for the rest of your life!" - then he saw my face and realised what he'd said was really pretty dumb. He adjusted it to "you don't know what its like to have something life threatening" None of his tests showed up anything actually life threatening and he can still cycle 55 miles in one go if he feels like it.
I have 4 kids and when they were younger I looked for activities they could do that I could sit and watch. I've felt the guilt bit - and I wasn't as ill as you are. Glad to say mine have all grown up OK and none of them have held "lazy mummy" against me.
Take care - Scottie :)
Hi Victoria - I agree that mum-guilt is one of the worst, and it never goes away! I think all we can do is learn to accept that we can't do everything, and some days we can only get to work , get home and cuddle the kids (or as they get older, listen, advise, suggest etc as well as cuddle).
Weekends need to be some fun for you too. If that means doing less running around and sitting in the garden or lying on the couch whilst the little ones play nearby, do it! They will remember these times just as fondly as all the car trips etc that are involved in other activities. Focus on building up your strength for your surgery and look forward, once you are recovered, to having a bit more energy for yourself as well as for everyone else. Good luck, xx Ailsa
Victoria,
My son is already a teenager but I sure can understand where you are coming from. The pressure is unbelievable at times. I would say to take a long break for a while. Who knows? Maybe your children will appreciate it too. They may be feeling a bit overwhelmed as well. I'm sorry you got that reaction from your hubby. When I tell mine about my joint pain, he always retorts with his joints hurt too. I always say "well you better get that checked by the doctor" and that usually keeps him quiet for a while.
Blanket picnics and coloring are fun and something you can do with your children and not so stressful on yourself. I'm sure they would love to spend some time with you all to themselves also. Cherish the moments. :)
Thanks everyone. Truly.
I know I need to not pack so much in at times. There are some great suggestions on what to do and all of you are right about my kids enjoying the quiet times together just as much as the running around.
I had to laugh because I just thought of both my boys thinking on Monday mornings along my thoughts, "thank goodness we are at daycare...now we can take a breather too". :)
Vicky
Hi Victoria
That made me laugh ;D I can imagine two tinies having little thought bubbles coming out of their heads saying, "thank goodness the weekend is over".
You have been given lots of good advice from our buddies. You are the most important for now, and children are so accepting. They just need your love and company, anything else can wait.
Hugs to you all.
Kathyx
What a wonderful picture that makes - all over the world there are toddlers who are relieved to get back to the low key atmosphere of day care! Away from parents desperate to provide 'quality time' with their little ones ... parental guilt?
Dearest Vicky, whatever we say there are going to be times when you feel guilty. It's part and parcel of being a mother, and also of being long term unwell. Put the two together and you haven't a chance of avoiding it. From the first time we started chatting on the message boards, and from your blog, it's clear to me that you're a planner and brilliant at it. The things you do! Maybe it will work best for you to plan fun times rather than trying to force yourself to 'go with the flow'? The others have given you some great suggestions and I'm sure we all have examples of low-key fun times when our children were young. The sort of activities that involved us lying down while they were entertained!
My 'little ones' are now in their 20s, and I've been ill all their lives. But that's not what they remember. My eldest said recently how grateful he was that we didn't do too many after school activities when he was at primary school and that he had time to lie on the floor and play Lego. Especially with a story tape on. My middle one loved going to the kitchen showroom in the DIY store and playing house: I'd sit on a chair and he'd 'cook' lunch. Nobody ever objected! I just asked my daughter and she remembered blanket picnics especially when the soft toys had a 'wedding', story tapes and colouring, even just making sandwiches and drinking juice from special glasses. As Kathy says, children are so accepting. We never had much money, still don't, but that didn't matter to them.
Hope you manage a low-key weekend.
Take care - Chickpea
"Mom guilt" is my BIGGEST thing! Who the heck did I think I was having babies~
I made SOOOOOO many horrible mistakes that I would seriously give 10 YEARS OF MY LIFE if I could do it over!
My regrets are very deep and strong HOWEVER my kids turned out to be wonderful happy adults who love me so much and enjoy spending time with me.
In the end it seems my love was enough. They always knew I loved them even when I was laying down watching them play with LEGO's!
Victoria, I can tell you are doing it right simply because you are worried you will not!
You are wonderful!
Janna
PS Chickpea! You posted while I was typing this, and now I see your kids played with LEGO's too! They would have had so much fun building together while we laid on the sofa watching them!!
Hi everyone
I think Janna has said it all: 'It seems my love was enough'. That's what we need to remember when the guilt hits.
Love to all the worried mothers out there - Chickpea
ps I wish we'd known each other when we were mothering our young ones, Janna. We could have taken a sofa each and watched them make Lego models all afternoon. Who knows, maybe we'll get to do that with our grandchildren when that day comes?
Victoria,
There is a lot of great advice given here. I know my own mother was healthy but still I remember only the small things; like, playing with playdough, coloring books, reading, and watching the rain during a storm. I thought of her as a wonderful mother but it was here just being with me that made it so.
I have a little grand daughter and I too feel to tired and sick. She tells me she's coming over to take care of grandma. We cuddle, watch movies, she helps me make dinner, we play and just do the simple things together. She's my bright and shining star and I am hers.
There was an old saying, "Learn to appreciate the little things or you won't enjoy the rest."
Hugs,
SassieCat
victoria
honey i just want to hug you .
my oldest is now 13 and my youngest 9.
when my oldest was born i had very bad post natal depression, actually i think it was tripping into alot worse.
i have things i find very hard to say to other ppl in my head, he was a prem baby , he ate very little and that took him an hour , then he slept for 2, then ate for one, night and day wioth a husband who just didnt help, i was so mantally ill let me tell you i was suicidal, my friends came to visit i was sleeping on sofa with him, they made me a cuppa and said you look awful, i wa sso torn by guilt i couldnt see straight.
i wanted to be dead, i thought i was that bad a mother, i at one time, just one night, thought if he had acot death and stopped crying i would get well , that almost cost me my life that thought,i wnted to eb dead i was such a terrible person. even as i type this i feel a sense of shame, and that was 13 years ago, and i was very il with a husband who kept calling me a nutter, he finally left with someone else and i must say was best favour anyone ever done me.
i carried that guilt and fell pregnant with my second lad, and again i got PND, but this time i got to doctors stright away and told them its comming back i wasnt meds and someone to talk to about it, i got a community psychiatirc nurse called june, and she was the best thing that ever happened to me back then !! god i love that woman and will till day i die.
she said i aint hoovered in 3 weeks, my ironning pile is a heap, my house is upside down i have 2 young kids, and i work part time, and i aint got PND, youve got a clean home, its almost clinical, youve no ironning that neeeds doing and youve got PND DO THE MATHS!!
well it hit me in face like a punch, she said you aint super woman and you aint well, when are you going to give yourself a break ?? and i did and i got well and my house got ill! lol
well many time s over the years not knowing i had anything wrong with me, i was tired and washed out and over whelmed by trying to do too much, and you know something ?? my kids survived!!
theyre well mannered, theyre happy, theyve lots of friends , and they talk to me about everythign and anything, and all that guilt was a whiole lot of crap i carried for way too long!!
why do we do it to ourselves?? my oldest is taking 3 science subjects and sits exams a year early next year, he wants to be a forensic scientist , my youngest is way ahead in maths and above average in everything else, and is a computer whizz, i blamed me for so many thigns i had no control over, and they dont!!
somedays im on the sofa like a rag doll with no energy and on good days we get out and about, my oldest hugged me last week and said you know mum whatever happens i will always love you and i cried :)
you know its being loved they remember, its love that came from me and come sback to me.
guilt is a nasty demon, its whispers your inadequate, and your a rotten mother, and i tell you the rotten mothers just dont feel it! are you shooting heroin into your veins ?? are you drinking vodka whilst they starve?? i think not.
what you are tryng to be is super woman and hey were human, just human, and its all we can be.
did you ask to be ill ?? nope, did you ask for sjs and kidney issues?? nope, do you love your kids ?? well let me tell you no one who doesnt love their kids posts about guilt!!
take the advice, take it easy, curl up on the sofa and talk tot hem, educate their little minds, theyve all thier lived and yours to go here there and everyhwere, your doing way too much and likely the kids would be just as happy with a DVD and some paper and pen . i used to sit on sofa when i was exhausted, and just talk about a subject a day, why plants have the colour green, how they use sun to make food for themselves, how the bird sings ang the corn rippens in the fields, and you know it works and they learn even from the sofa.
give yourself one pat on the back for working and providing food for their tummies, and you get yourself well, for if you dont theyre going to be remebering mummy falling over with exhaustion and not lying on sofa laughing, never under estimate a hug, a smaile, attention , and laughter, never under value that, the thing my oldest son says was his fav thing as a kid was blankie time, when his little brother had his afternoon nap and we would curl up on sofa together , and just talk, then when they got slightly older i hugged my oldest under the blankie and my youngest sneaked in at back of my legs he called it the nest, just 3 weeks ago i was lying on sofa feeling pretty lousy and yukky, and they came up to sofa holding a blankie and at 9 & 13 one throw it over me and jumped infront of me, and the youngest dan said im sneaking into the nest mum, and it took me right back and youv enever seen a happpier mum and 2 boys.
T x
Thanks everyone. I am feeling better and appreciate everyone's advice. I will try to take it easy on the weekends when I am so tired. This weekend is a bit cramped with prior engagements. ::)
My oldest has kindergarten orientation at school and my youngest has not only his birthday party, but is going to another birthday party for his friend. My sister and mom are taking him to that party so I can prepare for his party later that day. My hubs and I are taking my oldest to his orientation.
Next week is a street fair/soiree in my town. It is actually quite fun with food, fun, children's activites, and music. I plan on going with my family IF I FEEL LIKE IT for an hour or two. :P
Wednesday, I cried through your whole post!
You are a lovely, lovely person. Over the past months since you joined this forum I have been repeatedly inspired by your WISDOM presented to us with a large dose of honesty and humility.
I count YOU a blessing in my life.
Janna
Wednesday -you are an inspiration. My heart goes out to you for having such a horrible time, but you are such a strong lady, and you've come through this. Jannia is right, you have a welath of wisdom. Thank you for sharing.
Victoria, well done you. Thank goodness you will have some 'Victoria' time, if you want to. Be kind to yourself and give those tinies a hug from me
Kathyx
Wednesday,
I don't know to tell you how beautiful a mother you are. Tears rolled down my cheeks as I was reading and I can't help but admire the courage and strength it took to post this. In my heart, you are anything but a failure and God blessed your children with a wonderful mother like you.
SassieCat
janna i love the fact your so honest about your anxiety, i think its something ppl hid, and you always being so upfront about it i know ha shelped more ppl than you ll ever know, and im one of them, i dont count myself as wise, just been to the university of life and have learned when ive been open in past with ppl about my PND, so many ppl have said i had it and i didnt get help was too ashamed, likley i was first person they admitted it it, that makes me so sad, if everyone was honest about depression and anixiety it would lose its stigma so fast and ppl would get help quicker, your one of those open ppl who maybe unknowingly to you, help so many ppl who dont post up about it xxxxx
kathy thnakyou for your post, as i posted it i thought, god what will ppol think of me, i share things here, i wouldnt likley not tell to ppl who know me well :) x
sassie you know it took me so many years to realise i was a good mum, but my kids healed me, i think because i dont judge ppl, and am openminded, even my sons friends come to talk to me about things, im apparently the COOl mum lol, one came 3 months ago and asked me about contraception, i didnt bat an eyelid, i smiled sat him down and said all about what types there were and how effective they were, then i told him about all the emotions that would bring, and how life wasnt a race, that sex was a great thing, but it took alot of maturity to cope with it, and if you cant handle what might come from it, namley babies, then you just werent ready to cope with the emotions it would bring up, after half an hour he said, im not ready am i ?
i smiled and said Alan, thats for you and your girlfriend to decide, but if you want my opinion at 14 ? no your not, and something sin life are worth the wait, he smiled back and said, dont tell my mum i asked you about it, euans said youd be honest and not tell her, made me feel happy to be the one they can talk to, and sad that more parents arent approachable to their kids, my son asks me all sorts of questions, i know that i couldnt have asked my mum about,i never want to think my son couldnt ask me about life, drugs, sex , relationships, id have thought a mum was someone you get guidance from , makes me feel very glad my son trusts me enough to even say to friends, talk to my mum :)
T x
Victoria, Did this past weekend go any better. Thinking of you and hope you found a way to slow down and get some rest. Roxanne
Roxanne,
Yes, I delegated and asked for some help from my friends and family....didn't know I could be so bossy! ;D I am having a better week as far as having a bit more energy. I got a procrit injection and that seems to help a bunch for about 5 or so days. I received a few answers from MUSC on if I should get medicare to help with medical bills for the transplant. I will qualify for medicare from the day of transplant and up to 36 months after transplant. This has caused me stress with all the medical bills piling on. (I know much of you feel the same).
Thanks!
Vicky
victoria
so glad you you going to get financial help!! must be a right weight off your mind, cannt imaginme how much that must have been preying on you.Glad also to hear your giving yourself a break and feeling the benefit of it, wonderful news :D
T x
Vicky, That is great news on the insurance. Know that is a great weight off your mind. It's tough when you don't have insurance or have a high deductible. I was able to get all of the tests that my docs recommended last year because I met the $5000.00 deductible on my insurance with my biopsy and other med procedures.
Good to hear that you got some help this weekend. Not bossy just smart.
Roxanne
Yes, I think we all can relate to the stress from worry. Especially when comes to financial and our future. That was really great news to hear that you will have the insurance and support that you need.
I won't say not to worry because I know we do. But I will say this, think of how much better you will be after the surgery, have confidence that it will take and that you will have behind you soon. :)
It is wonderful that you took some time to stop and smell the roses. Children grow up too soon, but great memories will last a lifetime.
Hi Victoria,
Thanks for posting about this - because though I am new to Sjogren's world, I am not new to feeling poorly, and the guilt that comes from it. I have a 2 year old and a part time job, and I am constantly feeling guilty and torn between trying to well at these things. As a result I end up doing far too much, but still not doing well at any of them.
I don't really have any advice, and in fact have taken great comfort form the wise advice being left for you by others, I just wanted to say - ME TOO! It helped me to know others feel the same...
Leah xx
Well....I have insurance, but the medicare will supplement. Having just one insurance just isn't enough at times. :-\
Leah, I am glad I am not alone with the guilt thing. I have good days and bad days. I tend to not have much patience with them at times and try not to "yell" at them....which I KNOW is the wrong thing to do. It is not their fault I feel bad at times. They are my angels and I love them soooooo much!