How to deal with not being able to do the things you love

Got home from my son's hockey practice and have a headache. My feet felt so weak while I was out on the ice coaching and I was worried I might hurt myself. I think I am in denial that I might not be able to do this much longer. I hope I can make it through this season. I'm trying to hide it from my friends and my son. He was trying to cheer me up but I'm really worried he will be disappointed in me.
I have spent so many years trying to hide my psoriasis and now with the PSA, I feel there will be no hiding anymore. I'm just feeling a little sad.

I posted a few pictures of myself and my family to share, I'm trying to keep the good memories fresh in mind to cheer me up. I am just not sure how I'm going to deal with some of this.

Sorry to hear about your night. I can truly relate to your worry with your son. My son (13 now) was 6 1/2 years old when I was diagnosed. At the end of his 2nd grade and into 3rd grade, I became temporily disabled, I couldn't walk or write my name, and I just couldn't get out of bed most days. I remember my son coming home from school and many times coming in my bedroom; shaking my shoulder and asking, "mom, are you alive?". Breaks my heart to know my son had to worry about that. My other kids had similar feelings about that time, but I see how this experience has enabled them to grow in ways that otherwise would have happened later in life if at all.

Your pictures somewhat remind me of our family outings. We spent lots of time in the outdoors; camping, hiking, fishing to name a few. For me, some of it is no longer and I have great memories about the hiking and fishing with the kids. Since then, our family has been able to make more memories in things we probably never would have done if life had not changed for us. We've experienced the "great outdoors" in our great room, had an "iron chef" night, movie nights in the backyard, swim competitions, and so forth. You'll still have opportunities to do/watch the things you love now with your son. My kids are more compassionate, loving, and serving than I ever was at their ages (18, 17, 13). Our time together is always special to us; most especially when doing something special. You will have it, too.

Its so hard to accept this, I know. I find myself usually 5-6 times thinking "No way, not me". I don't if I will ever totally accept this and come to think of it, may be that's why I keep doing the things I do in daily living. You have a great looking family and the pics were great. Hope your day tomorrow is a better one!

Hi, Bluesky, welcome to our group. We are all grieving here, and most of us know only too well what it is to be depressed. Really depressed. There are so many things we can't do anymore, and so many beverages we can't drink anymore. Personally, I am totally bummed by not being able to have a glass of wine. (The cruel irony is that I am a college-trained professional wine-o. I now spit every sip, just as I was trained to do ... LOL, but it's not funny!)

I try to console myself by focusing on the many things I still have, and the many things I still can do. I have my family, my friends, I can still keyboard and I can read, and do most things that don't need me to be on my feet for long periods of time. Am I successful in feeling positive? Ah ... sometimes.

You have such a lovely family, and your beautiful (and obviously well-loved) children are old enough to understand why you can't do all the things you used to do. And you'll just do other things with them.

I love your pics! And there will be more happy pics in the future. Maybe not playing hockey ... but with the right people in the viewfinder!

This is such a great place to share, thanks for telling your story.

Seenie

Ohh I feel your pain. This is such a hard thing to deal with and the way if affects out children is hard to deal with. I hate when I have to tell them I can not do something because I am not feeling well. My biggest problem is my hands. My fingers swell and makes it impossible for me to write. The problem is that both children have folders that have to be signed every night. If these folders are not signed then they lose a behavior card the next day. That makes them lose the chance for star student, a big award in their elementry school. I have tried to explain to their teachers about how some days I am unable to write but they do not understand, and since I did not have a diagnosis till this week they would not excuse them. This really upsets both kids who really want to be Star students. Unfortunately this is just going to be the new reality. Not one that any of us want to accept but it is there. I have learned to take advantage of the times when I feel better. On those days we go to the zoo or the park. We have special treat day when I have had too many bad days in a row. We do something simple like go to get ice cream or we have movie night where we pull out the couch bed and watch their favorite dvd’s. My son thinks that the movie night is the best. He can not do sports anymore because I can not get him to the practices but he says that getting to have movie nights is better. Kids are wonderful because the are disappointed but they forgive easily and freely.

Hey, Autumnmat! I was thinking about what you said about your kids' folders needing to be signed every night. Here's an idea that might be fun too: get a cheap digital voice recorder. (A quick search found this:http://www.tmart.com/4GB-Mini-Digital-Voice-Recorder-with-U-Disk-Function-Silver_p115444.html )

Check your kids' work folder, and have them record you saying "It's Tuesday night, and wow, am I ever happy to see that Sam got 9/10 on his math quiz! Doing a great job! My hands are too sore tonight, so can you sign that for me, teacher? Thanks!"

You could also use it to record questions or requests for the teacher, too. Or even reminders for your kids, LOL!

Before you do this, have a chat with the principal. The teacher is likely to be more cooperative if principal is in the loop.

Lol that is an awesome idea and they would have so much fun with it. Thanks

Hey everyone, thanks for sharing. It really helps to talk with someone who understands. Not sure what happened tonight but was feeling good all day and then became light headed and a little dizzy, follow by a slight headache. Not sure if it was from the MTX or doing too much. Has anyone had that type of side effect?

Glad you liked it! I'm a retired teacher and still good for something! ROFL ... I know, the kids would have a blast with it!

autumnmat said:

Lol that is an awesome idea and they would have so much fun with it. Thanks

Ya, that's the way it is, you never know what kind of day it's gonna be! Could be the MTX: it gives me a slight sick-headache, but only on the "day of" or the day after.

Seenie

PS I am envious that MTX is helping you already. I may be feeling a bit more peppy these days, but I don't know if it's the MTX or my imagination.


Bluesky said:

Hey everyone, thanks for sharing. It really helps to talk with someone who understands. Not sure what happened tonight but was feeling good all day and then became light headed and a little dizzy, follow by a slight headache. Not sure if it was from the MTX or doing too much. Has anyone had that type of side effect?

It's difficult to deal with not being able to do the things you love and to worry about how your kids will view you as you deal with accepting your limitations.

I have five children, ages 12, 11, 9, 6 and 3 (and take care of other people's kids, including a 3 year old, 1 year old, and 2.5 month old). My kids have seen me go from hiking 5-7 miles through CT and PA hills to using 2 canes or a wheelchair in the course of a year. Through this, they have learned many things. They've learned compassion. They've learned further acceptance of people with disabilities. They've gone further in the knowledge that parents aren't perfect, don't know everything, get scared, get frustrated with themselves, get frustrated with others for no particular reason, and often do more than they should just to try to make their kids happy. These are VERY important life lessons, because through it all they've learned what being human is. They've learned the difference between being disappointed in a person and being disappointed in a situation. They've learned that struggle isn't always a bad thing and that it can make someone stronger in ways they never imagined. They've learned life is an unpredictable journey and we need to live it to its fullest, even if that means curling up in bed reading books all day. They've also learned that it's ok to mourn the things that you've lost, but that losing the ability to do something isn't the end of the world- it's an opportunity for growth and to learn something new.

I've found that the example I set for my kids in my reaction to my ever-increasing limitations is incredibly important. Often I just have to think about how I'd like my child to hand the situation. Say my child broke a leg and couldn't do their favorite activity - would I want them sitting around moping about what they couldn't do, or would I want to help them find something they could do and would enjoy just as much as their favorite activity? ;)

Anne Marie,

Thanks for support. My youngest son is 13 (my daughter is now 21 and my oldest is 27 - how is that for a spread in ages?) It sounds like you were really hit hard with this disease when your kids were young. My heart goes out to you. You must be really strong to have worked through that, and I'm sure your kids know it now that they are a little older. I am really trying hard to keep a positive outlook, even though it is really tough sometimes. At first, I wanted to push my wife and kids away and shield them from my pain. I'm trying to be a little more open about it and hopefully they will understand. Thanks again.
anne marie said:

Sorry to hear about your night. I can truly relate to your worry with your son. My son (13 now) was 6 1/2 years old when I was diagnosed. At the end of his 2nd grade and into 3rd grade, I became temporily disabled, I couldn't walk or write my name, and I just couldn't get out of bed most days. I remember my son coming home from school and many times coming in my bedroom; shaking my shoulder and asking, "mom, are you alive?". Breaks my heart to know my son had to worry about that. My other kids had similar feelings about that time, but I see how this experience has enabled them to grow in ways that otherwise would have happened later in life if at all.

Your pictures somewhat remind me of our family outings. We spent lots of time in the outdoors; camping, hiking, fishing to name a few. For me, some of it is no longer and I have great memories about the hiking and fishing with the kids. Since then, our family has been able to make more memories in things we probably never would have done if life had not changed for us. We've experienced the "great outdoors" in our great room, had an "iron chef" night, movie nights in the backyard, swim competitions, and so forth. You'll still have opportunities to do/watch the things you love now with your son. My kids are more compassionate, loving, and serving than I ever was at their ages (18, 17, 13). Our time together is always special to us; most especially when doing something special. You will have it, too.

Its so hard to accept this, I know. I find myself usually 5-6 times thinking "No way, not me". I don't if I will ever totally accept this and come to think of it, may be that's why I keep doing the things I do in daily living. You have a great looking family and the pics were great. Hope your day tomorrow is a better one!

nym, wow! You are awesome, taking care of all of those kids. Thanks a lot for the support and sharing your experiences. Your insight into how you want your kids to handle difficulties applies to not only disabilities but to life in general. I hope I can be as strong as you.



nym said:

It's difficult to deal with not being able to do the things you love and to worry about how your kids will view you as you deal with accepting your limitations.

I have five children, ages 12, 11, 9, 6 and 3 (and take care of other people's kids, including a 3 year old, 1 year old, and 2.5 month old). My kids have seen me go from hiking 5-7 miles through CT and PA hills to using 2 canes or a wheelchair in the course of a year. Through this, they have learned many things. They've learned compassion. They've learned further acceptance of people with disabilities. They've gone further in the knowledge that parents aren't perfect, don't know everything, get scared, get frustrated with themselves, get frustrated with others for no particular reason, and often do more than they should just to try to make their kids happy. These are VERY important life lessons, because through it all they've learned what being human is. They've learned the difference between being disappointed in a person and being disappointed in a situation. They've learned that struggle isn't always a bad thing and that it can make someone stronger in ways they never imagined. They've learned life is an unpredictable journey and we need to live it to its fullest, even if that means curling up in bed reading books all day. They've also learned that it's ok to mourn the things that you've lost, but that losing the ability to do something isn't the end of the world- it's an opportunity for growth and to learn something new.

I've found that the example I set for my kids in my reaction to my ever-increasing limitations is incredibly important. Often I just have to think about how I'd like my child to hand the situation. Say my child broke a leg and couldn't do their favorite activity - would I want them sitting around moping about what they couldn't do, or would I want to help them find something they could do and would enjoy just as much as their favorite activity? ;)

Nym, you've said it so very well. Your kids are so lucky to have a Mom with such a thoughtful outlook. I'll bet they're terrific kids!

Seenie

nym said:

It's difficult to deal with not being able to do the things you love and to worry about how your kids will view you as you deal with accepting your limitations.

I have five children, ages 12, 11, 9, 6 and 3 (and take care of other people's kids, including a 3 year old, 1 year old, and 2.5 month old). My kids have seen me go from hiking 5-7 miles through CT and PA hills to using 2 canes or a wheelchair in the course of a year. Through this, they have learned many things. They've learned compassion. They've learned further acceptance of people with disabilities. They've gone further in the knowledge that parents aren't perfect, don't know everything, get scared, get frustrated with themselves, get frustrated with others for no particular reason, and often do more than they should just to try to make their kids happy. These are VERY important life lessons, because through it all they've learned what being human is. They've learned the difference between being disappointed in a person and being disappointed in a situation. They've learned that struggle isn't always a bad thing and that it can make someone stronger in ways they never imagined. They've learned life is an unpredictable journey and we need to live it to its fullest, even if that means curling up in bed reading books all day. They've also learned that it's ok to mourn the things that you've lost, but that losing the ability to do something isn't the end of the world- it's an opportunity for growth and to learn something new.

I've found that the example I set for my kids in my reaction to my ever-increasing limitations is incredibly important. Often I just have to think about how I'd like my child to hand the situation. Say my child broke a leg and couldn't do their favorite activity - would I want them sitting around moping about what they couldn't do, or would I want to help them find something they could do and would enjoy just as much as their favorite activity? ;)

I am so sorry that you are all going through this. I help to raise my two granddaughters on the weekends. This fall, I have not been up to going to all of their band competitions, soccer games, etc. They are upset with me right now because I've always been there for them and just recently have slowed down due to my pain. I haven't let on to them (still trying to hide my pain) that I'm hurting too bad to make it to everything. I have been unable to see a Rheumatologist yet because my company cut back on our health care and we can't afford the huge deductables. So, I am just getting by on pain meds from my pain specialist (for back issues). Sounds like I'm not alone out here...

Lainee Lainee! You certainly aren't alone at all. Do you think maybe it's time to tell your granddaughters what's "up" with you? Nym's post is very touching and thought-provoking.

Take care (along with your pain meds). We really do feel your pain!

Seenie

Thanks for the encouragement and support!

I reckon you are worrying about things that may not happen or may not be as bad as you think. You need to open up with everyone about what you are facing and then you can deal with with the real issue (how they react) rather than a 'maybe". Prepare yourself with a simple spiel with the facts of how it is affecting you now and what help you would like- even rehearse it before you do so so you feel comfortable with what you are going to say. But be prepared for the fact a few people will react in ways you will not like but think about why that may be rather than let it upset you.

I found with coaching my son's football team I didn't have to give it up but change how I did it. I couldn't run or handle the ball but I could use others to do this for me, either another adult or your son or other more advance players. I planned and ran the session. People will see you still doing a great job and not giving up. You will still be involved which is the important thing. They will admire you.

Kids handle the truth better than adults and will admire you for still being involved despite a disabilty.

You are obviously a great family man and my experience says that if you share your fears and problems they will repay you with understanding especially when they can see you still doing your best. Don't sell them short, family is a partnership!

Treat PSA like an enemy you will fight to the end.

Allan,

What great advice. I am fairly new to this disease, and the group too (been fighting it for a few years, but just put a label on it.) I have noticed a rapid decline over the summer, and now am starting to make up excuses for why I can/cannot do something. BUT...I vow to fight to the end, I will not give up. I really liked your reply to Bluesky.

I have always been the strong one, I don't need anybody's help, I can do it on my own. It is very humbling to learn that you CANNOT do it all on your own any longer. My poor husband will have to sacrifice as we have change the things we've always done together, with our granddaughters, golfing, working around the house, volunteer work, etc. I feel the worst for him, what he will have to do and sacrifice to help me through it. All I can do is pray about it, God is with me and knows what I am going through.

This group has already helped me so much, I now have an outlet so I do not have to share everything with my husband and burden him. (I think it will help when I can afford to see the right doctor too. It sounds like the medications others are taking help a lot.) Thank you all for being out there!!! - Lainee B.