Taking care of your kids with chronic pain

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Frenchdude
New Member


Date Joined May 2009
Total Posts : 17
   Posted 5/17/2009 6:23 PM (GMT -7)   
 
Hi everybody!
 
 First and foremost, thanks to everyone who answer to my last post. This site is really great, however I think it's a pity that we can't reply personally to those who write to us. Whoever would like me to though, they can join me at the my email address on request.
 
Having said that, I wanted to share with you my doubts and fears about my children vis-a-vis my illness. Some of you are surely going to recognize themselves in the statement. For your information, I have the joint custody of my 2 kids (14-11). This mean every other week basically. It has become increasingly hard for me though as much as I love them. I haven't work in a year now, so needless to say that I can't spoil them as I used to. My ex though, does not have that problem. Being in pain most of the time, I don't smile as i used to, I don't play with them as I used to. In short, I am the same, just a tad depressed and tired all the time (pain, insomnia etc) and jobless
 
.  I went to the swimming pool with the younger today but after 15 min. only, I had to surrender. Too much of my ol'friend (pain), I said to him: Vincent, I will get out now but you can saty though, I"ll be there watching you right by the pool. He looked so dissapointed. If he only knew what it too me to just drive him there and be in the pool for 15 min. which would seem measly to most normal people but for me, it was quite a feat. I tried to explain to him my situation but I could see in his eyes that he just couldn't grasp what I was saying.
 
My kids know about my condition, but they seem to forget quickly or it doesn't quite sink into their careless and naive minds. I don't blame them nevertheless. Even adults have a hard time understanding what it might be to be in pain all the time, let alone children.
 
I fear losing them though someday. If I can't offer them what they should expect from a self-respecting dad, well it might just happen. I am scare they will lose respect for me.
 
Also, I am currently on Fentanyl patches at this moment, 25mg to be precise but so far it hasn't worked miracles for me. Could it be because I am using the generic? Could the real ''Duragesic'' (from Jenssen I think) be more effective? After all, they invented the technology. I am comtemplating asking my Doctor switching me to Opana (morphine slow release) which is MS Contin here in Canada. I was on Oxicontin before until I became tolerant to it. Would Opana be better than Oxy in your experience.
 
Thanks for the feedback et à bientôt!
 
Frenchdude.
 

fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 5/17/2009 6:44 PM (GMT -7)   
Frenchdude, I hope I did not leave you with the impression that you could not respond to someone who posts to you on a thread. You just post again and you can address it to them as well as to others. As per kids and CP. From my experience, kids do not understand the depth that CP effects us. As I was injured 11 years ago and my kids were 12, 10 and 7 at the time, the family dynamics changed alot. I did not work for some time and then went back to work and had to find a job that allowed me to have flexable hours as I dealt with the pain and limitations. I eventually took the job I have now and work more than I should as most here know and remind me but I have tried to find ways to spend time with my kids. I made sure I never missed a soccer, baseball or football game. I suffered at times but it was worth it. We did not do the camping thing anymore as I had to sell things and then it was not working sleeping on the ground. I still tried to find things that they and I could do together. My kids are grown now and I find that they still don't understand at times as they bring friends home and if I am there, I am usually in bed. It is difficult but I encourage you to find things that they are interested in and at least be supportive. There is no easy answer. When I got the small settlement after I was let go after being injured, I bought each a gift that they could use in the future. My oldest son wanted a set of drums. Now he has many opportunities to play. My middle son wanted a guitar. Now he not only plays very well, he also has his own guitar accademy and records music. My daughter wanted a keyboard. Now she plays every Sunday at church and also for special events. I love listening to tham as I can play the radio but not many people still listen to one. Blessings and don't give up connecting with them. 

Tony McGuire
Regular Member


Date Joined Feb 2009
Total Posts : 483
   Posted 5/18/2009 10:19 AM (GMT -7)   
FrenchDude: The one who determines whether you can e-mail them is each individual, not this site/forum. Lament the e-mail issue with each person not allowing e-mail contact.
Wife: Liz, the choice of a lifetime
Dogs: Koshka Prayer & Chomp Prayer
Meet My Wife And Me


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 5/18/2009 4:25 PM (GMT -7)   
My kids are 20, 16, and 15 I will tell you its hard to do with CP. My oldest even lives at home so I still deal with him. My CP has only been for the last 2 years. During those 2 years I have found out sport events are hard to deal with. Tonight my 16 daughter has to softball games starting one hour ago. After working 12 hours today there was no way I could physically handle going. I told her I was sorry and that I would go to the next game as long as it wasn't a double header. She is the one who is the most understanding. Plus I have to go to work again tomorrow morning.

My youngest who is 15 has the hardest issues with my CP. He is so used to me being at every baseball game regardless of how late or how many. He at times can be alittle selfish but then what 15 yr old isn't..lol I try and thats all I can do. Its one day at time when it comes to children. I always worry if my children will have enough good memories of me. So everyday I try and make sure that I say I love you at least three times. Morning, night and once in between.

When your children get older they will understand what you went through and love you more for what you gave them.

Laurie
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 5/18/2009 5:32 PM (GMT -7)   
Keep talking to your kids. If you shut down, they will too. Find things you can do with them for small amounts of time allowing yourself to rest and recover in between. Even though you only see them every other weekend, you do not have be doing something with them every single minute.

Try to set some limits ahead of time. For instance, tell your kids you will take them to the pool for an hour. Tell them you probably won't swim, you will rest by the pool. Then, if you can swim for a bit, or you can stay longer, it's an extra thing. Let them know you can watch but you can't always participate. Let them know that you enjoy being with them.

Talk to your kids; play short board, card or video games; rent movies and take a break when you need one. Your kids are lucky to have a dad that wants to stay involved with them. Far too many dads stop being involved in their lives once the divorce is final. Teens need dads. Don't give up. It may become difficult over the next few years, but guess what, it probably would have become difficult anyway. Between the divorce and them becoming teenagers, your relationship would be changing anyway.

anice
Veteran Member


Date Joined Apr 2009
Total Posts : 536
   Posted 5/18/2009 7:08 PM (GMT -7)   
Frenchdude, I just read your post. Being a parent is hard on the good days. Being a parent suffering with chronic pain isn't good many days. I know. I have 2 children boy age 11 and daughter age 4. And on the weekends(alomost every weekend) we have my husbands kids twins boy and girl age 13. So I know what you are going through. It is hard. But you need to lighten up on yourself. My major concern as a parent is that I want my children to know that I love them and that I would go to the ends of the world for them. While I was growing up, I didn't know that. And it left some pretty deep wounds for me. I knew my gmother and my aunt loved me and I felt special to them. But I didn't feel it from my mother. I had to learn to let their love be enough for me, and it was.

My point is this. You are the dad. You love your children. Times will be hard and then they are at those ages that are hard under normal circustances. I know it is a little different for the dads. But it is still very important that your children know that you love them. Try and explain to them in simple terms that you hurt and that you are sorry that you can't do all the things you once were able to do, but that it doesn't mean you don't want to. Just be there for them. Be a part of their lives. It may not always be that cut and dry. And there may be times when they don't feel this way-but they are young and that age is pretty self absorbed. But one day they will look back and know how much you care for them. And it will make them proud. Ofcourse they want things different. Ofcourse you want things different. But it is what it is and we just have to make the best of it.

Hang in there. It shows you are a good father, you see your children. You are a part of their lives. Give yourself a break. You are doing a good job. We are here to encourage and support you. Post whenever you need to.
Anice

angel8
Regular Member


Date Joined Apr 2009
Total Posts : 109
   Posted 5/19/2009 4:03 AM (GMT -7)   
I too had 5 kids when I disabled out and they have been thru the entire gamat with me. They went from buying mall clothes to Walmart in a matter of days literally and it wasnt easy for me to handle, I think sometimes it was more me then them really. It bothered me far more then it did them.
 
I can honestly say that we kept talking,I let them know everything that was happening to me and why it was happening,I found out early that their biggest fear was of the unknown and this was true for all of them no matter how old they each were.
 
They were afraid that I was going to die literally and I saw them distancing themselves or clinging helplessly depending on the child we are talking about,each one reacted differently.
 
Once the understood that i was not in fact going to die from what was going on but that my life was going to change dramatically and they in turn would experience changes due to that changing then they seemed to even out and do ok.
 
They had everything done for them up to this point as I was a firm believer that their only job at that age was to go to school get good grades and enjoy their childhood and I was so worried that they couldnt handle the extra burden I was about to place on them with my inability.
 
I worried for nothing it seems as they all did wonderful. They learned life altering and things,things that taught them compassion and empathy,things I am not sure when or how they would have otherwised learend being taken care of and not being the caretakers as they each became.
 
They all could do laundry,clean house,think for themselves responsibly if I was having a bad day or was in the hospital which early out was alot. They became very independant beings and today as adults most of them are doing far better then I was at their age and all of them are in the people oriented service,helping others,or on their way to degree's in college slated towards helping others,it seems they grew into it by living it.
 
Kids are more resilient then we give them credit for many times and again the extent of this also depends on the child as each are different in their actions and reactions.
 
You may have to change the how of it but not the why as you love them just the same as you always did showing it in your mind is just finding a different means.
 
I do want to say here that adequate pain management has to play a huge part here because until our pain is controlled properly nothing else happens right? I urge you to talk to your Doc let them know how it is going and what and how the pain levels are effecting your everyday life and rasing your kids. Let them know honestly that you have to reach good pain control so that you can function as a parent and take care of yourself and your kids.
 
Once that happens all else will even itself out for you.
 
Good luck!

uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 5/19/2009 7:29 AM (GMT -7)   
 
 
FrenchDude,
 
I too have trouble with CP and my son...It isn't the actual Illness but the pain meds that cause the problems..He is almost 16, has an attitude anyway, and now he likes to go around calling me a "Drug Addict"...every day...Lots of fun...
 
Gotta go
 
Me.

 I hate Boats!!!!
 
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/15 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night..Glipizide 5mg. 2X in the morning
                                                                    

 


shannon1
Regular Member


Date Joined Feb 2005
Total Posts : 369
   Posted 5/19/2009 4:39 PM (GMT -7)   
I have so much to learn!!! I had two children AFTER being struck with my CP. They are now ages 5 and 2 and are alot of work, but also a TON of fun!!!!! I do hope that over the yrs, i will know what to do with them....CP is hard enough, but when it affects the one's you love, is the hardest!
Jan. 2009, complete hysterectomy, diagnosed stage 4 endometriosis & adenomyosis (age 36)
2003, dx moderate UC
2000, dx selective IGA deficiency w/ anti IGA antibodies
2000, dx Antipholipid Antibody Syndrome
1999-2009, chronic hemmoragic ovarian cysts, w/ partial ovary removal
1977, complete reconstruction of foot after lawnmower accident (chronic pain)
 
Meds
6mp 75mg, prednisone 40mg (just starting meds again)
percocet 5mg 3x day
potassium 3x day
 


anice
Veteran Member


Date Joined Apr 2009
Total Posts : 536
   Posted 5/19/2009 4:42 PM (GMT -7)   
Uniquelyme, I am so sorry that you are not only having to deal with the CP on a day to day basis, but also your son calling you a "drug addict". O that sets me on fire. I would almost want to slap his face for that!! I am sorry. Slapping a child is never that right thing to do. And it is just outright wrong for me to even say that. Please forgive me for even saying that. I should delete this and start over. I however do hope that your son would keep those opinions about his parent to himself and to give you due respect that you deserve. Maybe his lashing out at you is the only way he knows how to deal with your illness. I just think it is so disrespectful and down right mean for him to be that way. I wish I knew the correct way for you to deal with him. Maybe go up to him and wrap your arms around him and tell him that you love him and that you are sorry for the impact your CP has had on his life. And to assure him that you are under a drs. care and taking only the meds prescribed for you to be able to even function in life and otherwise you would be in bed crying in shear agony. Which way would he rather see you?

I am so sorry. Please... I am way out of line on this one. I just am so frustrated that your son is being this way. It is so wrong and inappropriate for him to be so mean to you. Please accept my apology and a hug. I wish you the best and I am sorry you are going through this.
Anice

Post Edited (anice) : 5/19/2009 5:45:47 PM (GMT-6)


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 5/19/2009 6:40 PM (GMT -7)   
My husband jokes I am a drug addict so I know first hand how hurtful it is. But French dude kids are so adaptable, mine are 15, 13 and 9 and quite accept me bringing them to a pool and not swimming. I just bring a friend for the youngest one so he still has fun. I play board games with them and always listen to their anecdotes and show interest in their lives or problems with teachers etc. They have grown use to me car pooling to decrease the amount of time I spend at games and I bought myself a light weight quality folding chair I drag around with me so I can sit when I do go. They have to help me a lot with house work and are happy to do it, I find it sad they have no memory of me playing soccer with them and that they will aways think of me as crippled but unfortunately thats life, enjoy them and listen to them, thats what all kids want, to know you love them and are interested in them. They bring me so much joy, nothing like a good laugh to raise your spirits or a childs smile at beating you in a boardgame!!!

Tony McGuire
Regular Member


Date Joined Feb 2009
Total Posts : 483
   Posted 5/20/2009 6:48 AM (GMT -7)   
Me,

Have you asked your son to explain why you are an 'addict'?

When he can't, or when he gives the wrong answer, then be prepared with a 16-year old answer of why you are NOT an addict.

Might be too serious unless you catch him in the right mood, but then he's your 16-year old so I imagine you know whether that is true or not, and when if it is...
Wife: Liz, the choice of a lifetime
Dogs: Koshka Prayer & Chomp Prayer
Meet My Wife And Me


Frenchdude
New Member


Date Joined May 2009
Total Posts : 17
   Posted 5/20/2009 7:46 AM (GMT -7)   
Thank you all for the kind words. Ça fait du bien! (feels good).

Uniquelyme, if my teenage boy called me that (junky), he'd be grounded for so long before he'd see the light of the sun he'd turn into he vampire. Joking apart, I know how vulnerable one can feel with C/P and I can tell you in confidence that disciplinewise I have become much less lenient that I used to with my offsprings. Keep in mind though, one thing I have learn is that as beautiful kids can be and as much I we love them, children are like predators and they feel when you are at your weakest and just take advantage of it. Therefore, in my opinion you should do something about that before it gets out of hand. It starts with a harmless slur and then what? Don't get me wrong, I am sure your teen is a great kid. But generally speaking, at that age, they tend to test your limits and you are there to remind him of the latter.

Sorta feel the same as Anice...sorry but she does have a point.

Like CP is not enough to deal with. Unfortunately, we don't leave this world when it befalls us, we keep living and dealing with it just like before.


Golitho, Angel8 your tips did not fall into deaf hears. truly appreciate it.

Frenchdude

shorty10
New Member


Date Joined May 2008
Total Posts : 1
   Posted 6/14/2009 11:12 AM (GMT -7)   
hello
 
My name is Kristy. I have been dealing with chronic pain for 4 years now. My chronic pain is from several lung surgerys. I feel as thou my son misses out on alot of your kids activities due to my pain. Sometimes i can't even move in the bed. Also i'am divorced since 2008. Are you married? I know it is very hard to care for  myself let alone my son. i'am on disabilty since 2005. But i tried to work off and on for about two years. I have a very low amunune system. I 'am also scarred that someday my son will leave me too. I get so deppreesed and angry at the situation. But i try to tell myself tommorrow will be better. My pain comes on so quickly and unexpected. I can be driving somewhere then all sudden my pain level is through the roof. How long have you had chronic pain? May i ask why did your husband leave you and the kids? I left my husband because he had cheated on me three times. He knew when we got married how my health was. What do you do all day? I read , watch tv ,try to do house work. are you able to do house work? I want to do so many things in my life. But my pain controls my life. I do really try not to allow that to happen. I thought i was the only mom that had chronic pain and has difficulty careing for their child or children. Please write me back. Here is my email kristina727@comcast.net. I have been to alot of diffrent pain doctor's. I finnaly found a good doctor. But still about 70% of the time pain is through the roof. How can you really handdle chronic pain and not get deppesssed? I try to keep busy. My pain getts so bad that causes nause.Do you have a support group in your area for chronic pain?
 
kristy 

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 6/14/2009 11:17 PM (GMT -7)   

Hi French,

You are not the first to say the patch was not covering their pain and you are also on a low dose. I started out on the 25's and they did little for my pain. After being increased to the 50's it did help somewhat. You are right about the different brands and I say that from reading what the other members have written here that used the patch too. I started the patch in the spring and as our temps got higher here in Tx thru the summer I found it extremely difficult to be in the heat. If I was in the sun and got hot it caused too much medication to be released and then by day 3, it felt like there was no medication left in the patch and I started having withdrawal symptoms. I ended up being taken off of them and that was fine with me. I like being outside and  they definetly interferred with that. As someone else mentioned, if you had better pain control you could do more things with your children and feel like you are more of a part of their life. Please get with your dr on this and see about making a change.

Being a divorced parent is difficult enough. Add health problems to the mix and its just plain hard at best. But, then raising children is probably one of the hardest jobs I ever had. The most important thing is just let those kids know you love them no matter what and you will always be there for them. There are many things you can do with them that does not require spending money and it will fit in with how you are feeling at the moment. Quality time is what they need. One of the others mentioned many things you can do with lthem like playing board games or cards, things like that. Get some puzzles and work on them together as a project. When my daughter met her husband, he was in the middle of a nasty divorce that had been dragging on for nearly a year. At that time his daughter was 2 1/2 yrs old. He agonized over not being with her every day and becoming a part-time parent. I told him then, all you need to do is make sure she knows her daddy loves her and is always there for her no matter what. She is 14 now and has adapted very well. In fact she is now living with him and my daughter. Do not let guilt slip in because you cannot afford to buy their every whim either.  

I know from experience that many adults do not understand CP and with that said, no, children cannot and do not get it when you say you are hurting or not feeling well because of the pain. If adults can't get it we certainly cannot expect a child to get it. Besides, thats just something that is beyond their world at that age. They do not mean it to be looked upon as uncaring or selfish as a rule. Personally, I kept my health problems very low key when it came to them. I did not want them strressing over something they had no control over, and yes children can stress at a very early age. My health problems were my burdens not theirs.

Again, if you pain is under better control than what it apparently is, you will be surprised at how much better you can maybe feel. Take care. Susie

 


crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.

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