I was 23 when I was first diagnosed with Psoriasis and was able to deal and accept what I had. Now, that I am 30 I was diagnosed with PsA and I dont know how to deal or accept what I have. I feel crippled, old, tired and at times worthless. I need to be the energetic, lively, life of the party woman I was. With 2 kids all under the age of 4 my SAH job is very demanding and I need to feel alive again and gain my energy back for me and my family. Its so hard tho. The pain is bad really bad sometimes and I just cry. How do I learn to accept this?
Oh Hun,
Its very hard to accept illness and sometimes something like PsA seems just too hard to accept at all. Its just so unfair especially on young people with young children…Crying is all part of the grieving so don’t feel bad that you cry, and that’s what we all seem to go through…grief, loss, we believe we are not the people we were.
There are no easy answers to acceptance, we all come to it or not in our own time in our own way.
I was lucky that I had already had the equipment to help myself through the worst of the loss, in the way of undergoing counselling for deep seated emotional harm I had encountered years before. This site too helped me see that this was not the end but a change, but as I’m coming up to the big 50 change is maybe easier for me at this stage of my life.
All the things I have gone through in my life make me who I am, I accept the PsA as part of me that I don’t particularly like, but still part of me all the same.
I’ve accepted I can’t be wonder mum anymore, and have a small network of friends who help me when I need and I help out when they need. That was hardest for me…accepting help, cos I’m the one that helps people. Maybe I didn’t feel worth helping, I don’t know but that’s what friends do. I don’t have much family except my 2 boys and they keep me laughing, and that’s so important, humour in keeping me sane.
I try and do one thing everyday that brings me joy, even on bad days.
If you need help in working through your feelings, seek it, there’s no shame in getting help and with all you’ve got on your plate, its hard to do it alone.
Best wishes, and be gentle with yourself
Kids love the Mommy they have. Its no comparison but I was an accidental tag along 12 years after my closest aged sibling. My Dads retirement parry was two days before my High School Graduation.......
Until My wife and I were suddenly thrust into this parenting thing in our 60's (after all we already raised 9) I had no idea what my my 46 year old mother with PsA (it was called something different of course) must have been thinking when she went into the doc for flu that wouldn't go away, and was told it would - in about 9 months...... Aside from wondering why clerks and and waitresses referred to my folks as my grandparents, and they didn't play in the neighborhood ball games, I didn't think there was anything different about my parents........ (i just thought they didn't like ball.) I doubt your kids will about you either. So my first words would be there is no room for guilt........ When your kids go off to school, you like everymother will shed a few tears. Its okay that your tears will be tears of Joy
Actually your kids can today be the envy of all their friends because they have more picnics than they do (A picnic for a PsA parent BTW is sandwiches on paper plates watching sesame street) And the first time they have sugar bombs (cold cereal) for dinner they will nominate you for parent of the year.
We have some amazing moms here, they will be along I'm sure. Once you know that the "super moms" are neurotic helicopter parents who don't have near as much fun as you do "acceptence" come come more easily. Face it a kid who can run the washing machine at 5, vacuum at 4, and pick up after themselves at 3 are a lot better off than the "superstars" at the university leve I've taught who need unlimited cell minutes to call home for advice on EVERYTHING including how to do laundry.......
Sure its not what you planned, but then finding a "partners" dirty underpants on the bathroom floor the day after you move in together isn't exactly the way you imagined life either.....
It's so hard to adjust to this condition! And, it takes time. Louise is right -in our own time and in our own way. Took me nearly 2 years to move to the point of accepting that I wasn't going to 'get better'' that is, be cured (and hey, who knows maybe one day!) I HAVE NOT given in- I have just accepted that this is the new me & I need to focus my energy (when I have some) on enjoying the good days (& not overdoing it!) and finding ways to deal with the challenging painful days. Believe it or not, you WILL improve over time with the right drugs & strategies for YOU- you just have to find them. There's lots of ideas, tips and support through this and other sites.
I still indulge in my pity parties "why me?, isn't fair etc etc. I still sometimes feel helpess and useless. I have gone from a strong independant working woman who always did for others including my adult children (Im 56) & mostly too stubborn to suck it up & accept the help I needed.
One day (& I'm sorry I don't know what the turning point for me was) I realised that my dependance gives the people I love the OPPORTUNITY to do for me, care for me & develop those same qualities of caring, nurturing and strength I so used to value in myself.
Don't get me wrong, I'm not some kind of virtuous angelic cripple- I can be be a total bitch and often am when in pain or feeling particularly frustrated.
You just have to gather your troops & resources and use them when needed. Like Louise said, you can repay the kindness when you are having a better day.
Yep, you probably have been supermom up until now! But things need to change. Kids survive a bit of dirt & untidyness in their lives & certainly enjoy junkfood & video babysitter when need be!!
All they really NEED from you is LOVE. They don't notice that the towels & sheets havent been washed for a week or so- they are more interested in stories & games & if YOU don't have the energy for that FIND SOMEONE THAT DOES! Even an older child of a friend will enjoy playing with the littluns! (probably not teenagers tho LOL)
And please, take care of yourself FIRST so that you do have some energy for others. Try & rest when you can, watch your diet & fluids, find yourself a good team of docs etc (yep I know, easier said than done!) Take whatever meds & painrelieving strategies work for you! Laugh whenever you can. No tissue box movies!
You WILL somehow find the strength you need.
I’m a stay at home mom of a 3 year old and it is HARD. I waa diagnose 2 months ago and what helped me has been Enbrel and predisone. Once you start a real treatment it gets easier. I combat my fatigue with some walking or running depending how I feel that day. My daughter loves it when we sit down and color and do crafts, kids at this age just want to spend time with you. She even follows me around and helps with chores. We have quiet time where we nap or watch a movie. You just have to find a system that works for you and them.
Its so true that kids just love being with their mums, I remember having big pre sliced buns, sliced ham, sliced cheese…get the kids to put them together pop them in the oven and camping under a blanket on the sofa with our ‘original hamburgers’ and lots of books…I didn’t have a name for what was wrong with me then…my husband just called it ‘lazyitis’! Lol
Thanks tntlamb! Your words made me cry, but in a good way. :) They really touched me! Thanks again for giving me a different view about life. :)
tntlamb said:
Kids love the Mommy they have. Its no comparison but I was an accidental tag along 12 years after my closest aged sibling. My Dads retirement parry was two days before my High School Graduation.......
Until My wife and I were suddenly thrust into this parenting thing in our 60's (after all we already raised 9) I had no idea what my my 46 year old mother with PsA (it was called something different of course) must have been thinking when she went into the doc for flu that wouldn't go away, and was told it would - in about 9 months...... Aside from wondering why clerks and and waitresses referred to my folks as my grandparents, and they didn't play in the neighborhood ball games, I didn't think there was anything different about my parents........ (i just thought they didn't like ball.) I doubt your kids will about you either. So my first words would be there is no room for guilt........ When your kids go off to school, you like everymother will shed a few tears. Its okay that your tears will be tears of Joy
Actually your kids can today be the envy of all their friends because they have more picnics than they do (A picnic for a PsA parent BTW is sandwiches on paper plates watching sesame street) And the first time they have sugar bombs (cold cereal) for dinner they will nominate you for parent of the year.
We have some amazing moms here, they will be along I'm sure. Once you know that the "super moms" are neurotic helicopter parents who don't have near as much fun as you do "acceptence" come come more easily. Face it a kid who can run the washing machine at 5, vacuum at 4, and pick up after themselves at 3 are a lot better off than the "superstars" at the university leve I've taught who need unlimited cell minutes to call home for advice on EVERYTHING including how to do laundry.......
Sure its not what you planned, but then finding a "partners" dirty underpants on the bathroom floor the day after you move in together isn't exactly the way you imagined life either.....
Thanks! I just realized this weekend too my efforts of being super mom dont always have to be there. I need to let others take care of me too.. It was too funny last night my 4 yr old came to me and asked if I was sick and I said yes. So we pretended he was the Dr. and I got a check up...He confirmed I was sick and that I needed to eat chocolate donuts and have a glass of chocolate milk and that would me feel alot better. :)
Your kind words really touched me. thanks!
xmasmumma said:
It's so hard to adjust to this condition! And, it takes time. Louise is right -in our own time and in our own way. Took me nearly 2 years to move to the point of accepting that I wasn't going to 'get better'' that is, be cured (and hey, who knows maybe one day!) I HAVE NOT given in- I have just accepted that this is the new me & I need to focus my energy (when I have some) on enjoying the good days (& not overdoing it!) and finding ways to deal with the challenging painful days. Believe it or not, you WILL improve over time with the right drugs & strategies for YOU- you just have to find them. There's lots of ideas, tips and support through this and other sites.
I still indulge in my pity parties "why me?, isn't fair etc etc. I still sometimes feel helpess and useless. I have gone from a strong independant working woman who always did for others including my adult children (Im 56) & mostly too stubborn to suck it up & accept the help I needed.
One day (& I'm sorry I don't know what the turning point for me was) I realised that my dependance gives the people I love the OPPORTUNITY to do for me, care for me & develop those same qualities of caring, nurturing and strength I so used to value in myself.
Don't get me wrong, I'm not some kind of virtuous angelic cripple- I can be be a total bitch and often am when in pain or feeling particularly frustrated.
You just have to gather your troops & resources and use them when needed. Like Louise said, you can repay the kindness when you are having a better day.
Yep, you probably have been supermom up until now! But things need to change. Kids survive a bit of dirt & untidyness in their lives & certainly enjoy junkfood & video babysitter when need be!!
All they really NEED from you is LOVE. They don't notice that the towels & sheets havent been washed for a week or so- they are more interested in stories & games & if YOU don't have the energy for that FIND SOMEONE THAT DOES! Even an older child of a friend will enjoy playing with the littluns! (probably not teenagers tho LOL)
And please, take care of yourself FIRST so that you do have some energy for others. Try & rest when you can, watch your diet & fluids, find yourself a good team of docs etc (yep I know, easier said than done!) Take whatever meds & painrelieving strategies work for you! Laugh whenever you can. No tissue box movies!
You WILL somehow find the strength you need.
Thank you all for your comments...it makes me feel better that Im not alone here. Thanks for your support! :) I saw the Dr. yesterday and shes going to put me on Humira and give me the max dose of mtx.Now I just have to get over this cold before I start on Humira. Im hoping that will do the trick to getting me back on track!
You are definitely not alone. Parenting with a disability is still parenting, we just need to be creative in the way we handle different situations. For me, the worse I feel, the better a day my kids seem to have - because the worse I feel, the more time I spend talking with, reading to, playing (board games, cards, puzzles, I Spy, etc.) with, and generally interacting with them, as I'm not "too busy" doing housework and such. My kids do lots of creative things - drawing, painting, making things out of recyclables and tape/glue - because I can throw the stuff on the table and tell them to have fun. My kids read a lot. They play outside every day. They have fun cooking. They help with housework because they live in this house and need to contribute to its care. My four year old can load the dishwasher, hand wash dishes, sort laundry, fold towels, sweep, mop (or our form of it - put sponges or rags in old socks and give the kids a spray bottle of vinegar and water - let them spray and skate the floor clean!!!), and more. We have movie days on my really bad days where the kids choose a theme and each pick a movie. They need to find one cartoon, one documentary, and one live action movie having to do with the theme. They chose Halloween last week, and watched a Winnie the Pooh halloween movie, "The Worst Witch" and a History channel documentary on Halloween. This led to a lot of learning about the Salem Witch Trials, Pagan / Christian traditions and how they're related, and discussion about presuming things about people that may or may not be true.
Finding perspective and balance are important. Finding yourself in the midst of this disease is essential. We not only need to accept PsA, but we need to accept who we are with PsA. :)
Thanks nym! Those are some great ideas! I know it will take time...its just hard but not impossible. :)
nym said:
You are definitely not alone. Parenting with a disability is still parenting, we just need to be creative in the way we handle different situations. For me, the worse I feel, the better a day my kids seem to have - because the worse I feel, the more time I spend talking with, reading to, playing (board games, cards, puzzles, I Spy, etc.) with, and generally interacting with them, as I'm not "too busy" doing housework and such. My kids do lots of creative things - drawing, painting, making things out of recyclables and tape/glue - because I can throw the stuff on the table and tell them to have fun. My kids read a lot. They play outside every day. They have fun cooking. They help with housework because they live in this house and need to contribute to its care. My four year old can load the dishwasher, hand wash dishes, sort laundry, fold towels, sweep, mop (or our form of it - put sponges or rags in old socks and give the kids a spray bottle of vinegar and water - let them spray and skate the floor clean!!!), and more. We have movie days on my really bad days where the kids choose a theme and each pick a movie. They need to find one cartoon, one documentary, and one live action movie having to do with the theme. They chose Halloween last week, and watched a Winnie the Pooh halloween movie, "The Worst Witch" and a History channel documentary on Halloween. This led to a lot of learning about the Salem Witch Trials, Pagan / Christian traditions and how they're related, and discussion about presuming things about people that may or may not be true.
Finding perspective and balance are important. Finding yourself in the midst of this disease is essential. We not only need to accept PsA, but we need to accept who we are with PsA. :)
Nym, you are so wise 