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Posted 7/29/2008 2:10 PM (GMT 0)
I just had a breakdown in front of my 8 year old daughter! I feel like such a horrible mom because I can't do the things with my girls that I would like to do. I am a school teacher so this is our summer break and it is taking a toll on all of us. I don't sleep at night and I wake up feeling ill. Last night I had to take a warm bath at 2:00am just to finally get t sleep 30 minutes later! It seems like this is the case night after night. Then I woke up at 5:00. I am hurting all over and can barely move my right arm. I forced myself to cook some eggs, but beating eggs is no fun when your elbow hurts. Unfortunately, this will be my one motherly duty that I accomplish aside from changing diapers today. It is difficult for me to hear that I will probably get worse. I am only 30 and I am a single mom. I don't know how I'm going to continue a life like this. I am also very concerned about being able to go back to work in August. I just feel like I'm running out of energy to fight this. No one seems to really understand what is going on, so I look like I'm just lazy and don't care about my kids. My mom acts like I can control whether or not I sleep and how I feel. She says "you need to keep moving and you'll feel better". She doesn't understand how tired my body gets from a few hours of constant movement, or even from light housework. Folding laundry even kills me! I just feel like I'm on the verge of destruction here. How can I make my life better?
Posted 7/29/2008 2:31 PM (GMT 0)
Cindy, I'm so sorry your feeling so bad. I don't have small children and really can't imagine how you young mothers do this but my heart breaks for you.

 

Have you gotten any help from your doc with the pain??? Besides moist heat what you are doing for the pain???

 

Your not a bad mom, your a mom in pain. You did not ask for this DD.

 

Is there anyone that can help you out til things gets better and hopefully they will soon???

 

Your mom is right about keeping moving but I know that is very hard when your in pain and sleep deprived. Just do what you can for the girls maybe find crafty things the older ones can sit and do.

 

I hope this passes very soon for you. I'm sorry your summer has been so bad. You know we are here for you.

 

Maybe the other mothers can give you better advice.

 

luv and hugs

Marlee

 

 

Posted 7/29/2008 3:19 PM (GMT 0)

Hi Cindy,

I am sorry that you are having such a hard time right now.  I no longer have small children, my son is 35 and my grandson is 10.  I have had this all my life, so I did raise my son and have to cope with all the pain and frustrations of having fibro.  I was lucky, I was a full time mom and I had a lot of help from my friends and neighbors.  Back then they didn't have a name for what I was going thru, but my friends and neighbors knew that I had good days and bad.  We would trade off keeping the kids.  If I was having a bad day one of them would take the kids and do something like riding bikes, swimming or just playing at their house.  I in my turn would have the kids for a movie and popcorn or take them to the library for story hour.  There are lots of things like that to do if you just get creative.

Your probably not sleeping well because of the pain and stress.  As we all know pain causes stress and stress causes more pain, like a vicious circle.  Maybe you should talk to your doc about something for the pain and maybe something to help you sleep.

As far as your mother is concerned, I agree with Marlee, you do need to keep moving.  I know that is not easy and a must with small children.  Get your Mom some good articles or books about fibro and educate her as to just what is going on with your body and emotions.  I am sure if she truly understands what is going on she will be willing to help you out.  Don't be afraid to ask for help.  We all need a helping hadn once in a while.  And don't feel that you are being weak if you through yourself a good old fashion pity party now and again.  It can be very cleansing and make you feel better.  Go ahead, have a good cry and then say: OK, I've got that out of my system, now how can I make things better for myself and my family.

We're all here to help and to listen when you need to vent.  I promise, things will get better.  I know that I am one of the ones who says that fibro will get worse, but somehow it also gets easier.  I guess that after so many years, you just learn what you need to do and you do it.  You learn to accept what you can't change and that you have limitations and somehow that makes it easier.  I hope that makes sense.  Keep your chin up and know that you do have that inner strenght to go on.

Posted 7/29/2008 4:57 PM (GMT 0)
Hi Cindy,

 

Wow!! what a lot to deal with right now!!  I don't have any small children either but I do have 4 grandkids and 2 of them are special needs so I do know some of the demands you are talking about.  I have my grandkids quite a bit sometimes and they have been with me when I have been at my lowest.  I only take the older kids(Jakob 8 and Lauren 6)overnight and sometimes several days at a time.  I did have the 3 older kids for 6 months straight though when the youngest baby was born very prematurely and wieghing in at just 14 ounces so a very long hospital stay.  There was noone else that could take these kids at that time and I didnt know how I was going to get through it but not much of a choice.  The older kids can handle more then you can imagine Cindy.  Sit them down and talk to them and they can understand that you hurt badly right now and are tired and incorperate them into helping out.

 

An 8 year old is more then capable of making eggs with guidence and so much more.  You dont have to have her do it all but she can most certainly join forces with you to get some of the chores done.  I too had several meltdowns with my grandkids here,one was at Christmas time and what was supposed to be the most wonderful time of the year for them was pretty rough specially with thier mommy gone and being worried about the new baby.  They had been fighting and arguing all day and I just started knocking the presents on the floor by the Christmas tree and screaming at them that they were rotten brats and they would be lucky if Santa even came that year.  They were terrified that Gramma was losing it and cried like crazy until I finally had something in me snap me back to realality and I was horrified at my behavior!! I sat the kids down right there and then and told them how much I needed them right now and that gramma was in pain and tired and needed help.

 

Surprizingly,they were very understanding and compassionate.  They forgave me for my outburst and really pitched in to help including being on their best behavior. I know you feel out of control right now,how could you not feel that way with all that is happening right now?  But the kids do know the good mom that you are and most times they really just want to know whats going on with you.  And as for your Mom,she needs to get with the program and help you out wether that be helping out with chores or just taking the kids for the day once in awhile.  I am sure you have been there to help her more then once and it is time for other adult family members to step up and take some of this pressure off.  Have her come here and read some posts including what you posted.  Sometimes it takes seeing it in writing and seeing how you have been forced to reach out to others to see that this is really something legit and it doesnt just happen to you but millions of ppl everyday.

 

Have you tried taking anything to help you sleep?  You can buy melatonin over the counter and it can help immensely.  Maybe you just need that lil bit of something to relax you enough to put you over the edge into slumberland and this wont leave you feeling groggy the next day either.  And please do call your doctor and talk to him about getting some pain relief.  You shouldnt have to suffer like this and it is a good bet that with some pain meds you can get some of that much needed sleep as well.  Good luck Cindy and know that you are not alone.  We have all gone through this kind of thing at one time or another and you ARE a good mom or you wouldnt even be worried about this effecting your kids.

 

Soft Hugs,

Karen

Posted 7/29/2008 5:30 PM (GMT 0)
Cindy, don't be so hard on  yourself.  You are doing all that you can at the moment.  And, I think things will get better.  I have had fibro for 21 years and I am better than when I started.  When fibro hit me I was in terrible pain from head to toe.  My elbows were like I banged the "funny bone" and I couldn't stand it.  I even entertained the thought of amputation to get rid of the pain!  I know that sounds crazy, but that's how bad it was.  My doctor put me on ibuprofen (600 mg. every six hours around the clock) and Tylenol and that did help me.  I kept moving and stretching and doing things, and slowly, and the pain eased.  I started learning what caused me more pain and avoided that.  So, I think, once you get a handle on this, you will learn how to control it.  Also, stress really makes things worse and you sound very stressed out.  Please try to relax a little and take one day at a time.  Don't project yourself in the future, since none of us know what that holds for us...even with fibro!

 

I do take malic acid/magnesium supplements now.  I started these last December and I don't have to take as much ibuprofen now.  (Always take ibuprofen with food!)  It has really helped.  Also, I get light massages and I do feel better after them.  Rice bags help.  You can heat them in the microwave and they give off moist heat.  In the Fibro 101 thread, there is a link to stretching exercises that don't take long to do but they do help to keep the muscles more flexible so there isn't as much discomfort.  Walk, when you get a chance.  Walking helps with the pain and any gentle exercise is good for fibro.  

 

I also have Crohn's disease and that causes a lot of pain and diarrhea.  I was your age when it hit me.  I had three children, ages 4 1/2, 2 years, and 10 months old.  The Crohn's caused me not to be able to do things with my children, either.  I couldn't be far from a bathroom.  It was horrible and I felt guilty about it for many years.  I did try to do all I could and I was as good a Mom as I knew how to be.  Well, a few years ago, I broke down crying to my children that I felt horrible that I couldn't do what the other Mom's were doing when they were younger.  I wanted to take them on picnics and so on but was unable to because of illness.  My children were so surprised that I felt that way!  They said that I was a far better mother than what any of their friends had.  I was always there for them, I always had a meal on the table and we had family dinner every night.  So, it's the quality time that counts, Cindy.  I'm sure your children love you heaps and, as they grow, will understand more and more. 

 

So, try to take a breath and only do what you can do.  Your family can pitch in.  You can't do everything you used to do in the same amount of time.  It will get done but not as fast.  Explain to them that your muscles hurt so you could use their help.  Also, if you have a bad day and the yelling ensues, you can apologize and tell them that you have not felt well that day so you didn't have the patience you should have.  Children understand more than we think. 

 

It will work out.  You will find what works for you to help your pain.  You shouldn't be this miserable all of your life.  There is help available.  We are here with ideas, too, to help you live a full and enjoyable life. 

 

By the way, summers are my worst time with fibro.  You just may find that when the humidity and rains leave, so will a lot of your pain!  Just take one day at a time and be thankful for all of the things you CAN do!  Besides, it sounds like you have a lovely family to be thankful for.  Enjoy them instead of dwelling on the pain.  I find it fades in the background when I focus on other things.  I do hope you have a much better day today.  You are a great Mom!

 

Sherrine

Posted 7/29/2008 7:01 PM (GMT 0)
Cindy,
I have a four year old and am experiencing such guilt about not being able to run around with him. I am in the third week after a "push and crash" and am starting to get really depressed about how long it is taking to return to precrash functioning, which wasn't all that great. In the last three weeks, I have played many board games on my bed, watched kid videos and tv, and played on kid websites. The guilt will drive you crazy if you let it. I also have guilt from being unable to work the last three weeks. For me, this is a short-term crisis in a long-term illness. I am taking some pretty strong meds to get me through it and some days it seems as if I am getting better. The sleep is critical. Are you taking anything for sleep? My job, like yours, is working with other people's children. I am a child therapist and have a private practice. I have cancelled most of my sessions but some days am able to make one or two sessions. On those days, I feel guilty about spending precious little energy on someone else's child instead of my own. It's tough. It's not insurmountable. It does not have to get worse. Most sufferes find a regimen that works for them and they learn how to manage the illness instead of the other way around. I empathize with you because I'm in a relaspe state and everything is such a huge task. But it won't be forever. You have to believe that. In order to not get worse, rest after every single thing you do. If you scramble eggs, sit down and rest for 15 minutes. If you can figure out the sleep thing, that will be huge. I am so right there with you.
Holly
Posted 7/29/2008 8:39 PM (GMT 0)
Thanks so much for all of your replies. I will try to answer as many questions as I can remember. I am on trazodone at night to help me sleep, phentermine in the AM for energy, and a daily low dose of prozac. This was working until now. It's not so much the pain at night, but the RLS. I cannot stop moving my legs! I'm not on anything for pain for one huge reason-It doesn't fix the pain, it just makes me not care that I'm in pain. In fact, I don't care about anything! Before I was dxd, I was being seen for neck pain. I slept very poorly at night and no one could tell me what was going on, they just kept heaping pain killers and sterroids on me until I was doped up all day and terribly moody. I would start with a small dosage of darvocet until it didn't work anymore and they would up it. Eventually, I was on MS Contin. This was a vicious cycle until I went to the hospital with a terrible migraine and they tried to give me pain killers. I lost it with the doc and refused to take them. That week, I got off all pain meds and began to feel lots better. My boss actually said I was a different person! Now I genuinely feel that I may be going through my first actual flare with fibro. The past week has been much different than the dull aching I had experienced, which is probably adding to my feeling of doom about this illness. Today I went to visit my aunt's grave and on the way back to the car, I couldn't walk. Out of nowhere, I had stabbing pains in my knees and it actually hurt too bad to walk. I am just very conflicted about what type of treatment I want to pursue with this. It may be in my best interest to wean off of everything and try vitamin supplements or something. Thanks for any advice.
Posted 7/29/2008 9:02 PM (GMT 0)
Cindy, many with fibro are on antidepressants.  That may help you.  They do help with the pain, believe it or not!  You are depressed, and who would blame you?  Fibromyalgia is a miserable illness, but there are far worse things out there.

 

I would suggest you see your doctor about an antidepressant to help with fibro.  I do not suffer from depression so I am one of the lucky few that aren't taking medication for that.  I bet the majority on this forum are on them though. 

 

Also, I told you about the ibuprofen and Tylenol on the other post.  Have you tried that?  That's what my doctor had me try first, before all the other high powered meds, and it worked!  I'm never without pain but my pain in managable and I have lived a good, active life.  Yes, I will have my days, weeks, and sometimes months, with more pain...and flares, but overall I am managing it well.  But, these bad times are followed by good times as far as pain is concerned.  If you try to be pain free, you most likely will be doped up and you can't do that...especially with small children.  But, you can find what works for you so that you can still be active.

 

You will learn, over time, to kind of ignore the pain and move forward with your life.  Right now you are focusing on the pain and are madder than Hades about it, too!  That makes the pain worse!  Try really hard to accept it and move forward.  You CAN work around the pain to do what you want to do in your life.  We can help you, too, with ideas.  If you want to do something and can't figure out the best way of doing it to prevent more pain, just ask here.  We have some great ideas.  If you add up all the years each of us have had fibro, it would be hundreds of years of living with fibro!  So, we do have good ideas here.

 

Try to look to the future with anticipation.  Fibromyalgia is not a death sentence and the doctors and scientists are working on finding out what is causing this and hopefully we will have some answers soon.  But, you do have small children and you do need to move forward with living and enjoying them.  They stay small for such a short time.  You can take them to the park, read stories to them, go to the movies, go for walks after dinner and discuss all the fun that happened during that day.  Try to think of the happy things in your life and I think the pain will be a little better.

 

Let me know how things go for you, Cindy. 

 

Sherrine

Posted 7/29/2008 11:41 PM (GMT 0)
Cindy, I'm so sorry for all that you are goign through right now. I don't have much advice for the pain of fibro. I'm still on my way to a dx and learning every step of the way. But you have gotten some great advice up in the other posts... rest when you can, use moist heat, double up on the tylenol and advil (although it doesn't work for me, it's worth a shot). I guess I went through a flare a few weeks ago. I was so down, I didn't see how I could manage to keep going. If this was fibro, then I would rather have anything else. But I kept moving, and I made it through. It was a huge help when I didn't focus so much on what I couldn't do, but on what I could do instead.
Hopefully if you can get some sleep, your pain will improve dramatically. There is another post about rls too, you may get some ideas you haven't tried yet.

You mentioned you have a dd in diapers, how old is she? I have 2 girls, 16 months and 4, and 2 boys, 5 and 9. The 4 y/o has become such a rude little diva since her birthday, and the baby is either the most active of the bunch, or I'm just too old to keep up, lol. Then the boys are so loud, I think they play their war games only when i"m around to drive me over the edge! But really, they are good kids. And you know what about kids? They are very forgiving. Be upfront with your 8 y/o, let her know how you feel and that you need help. I can't imagine being a single mom, so for you, it's especially important that you get help when you can. I just divided up a chore chart for the kids, b/c I just coudln't keep up and do it all myself. I could leave things, but if it's not done, I see the mess, it makes me on edge, or depressed, and it spirals down from there. My 9 y/o was especially helpful in deciding what each child could do, and he was much more open to helping when he had a say in what he had to do. And make sure you set some time aside each day for YOU, something relaxing that you enjoy. Is there any way that you could hire a mother's helper to help with light chores or taking the kids for an hour in the afternoon? How about on your worse days, forget getting dressed adn beds, but put a fun spin on it for your girls... it's PJ day!! snuggle on the couch with some sandwiches for supper and watch movies. And you don't have to be active to spend time with the kids. Some days when I take the kids out, I can't run around like I used to. I take out my patio chair and throw them a ball from there. Find some crafty projects that you and your older dd can do together. I don't know, just throwing ideas out there. It's always easier when you are on the outside of the situation. I like the idea of getting your mother informed on fibro too, you really need her on your side so she can help out when you need it.

And please don't look too far ahead. No sense worrying about the new school year when you may feel perfectly fine then! Good luck, and please let us know how you are doing!
Posted 7/30/2008 12:47 AM (GMT 0)

Cindy,

I know the feeling of guilt, feeling like a bad parent.  I have three daughters, 15, 13 and a 10 year old.  It has been rough, we have missed out on a lot and I feel horrible about it but kids are very forgiving.  If you were to ask them what they remembered most about their mom, they would probably say snuggling on couch, not missing out on a day of shopping.  My 10 year old was a concern for me for some time, she was very worried that I would die.  It's not normal for mom to be sick in bed all the time.  We had many talks and I hope that I have convinced her that I will not die from this.  I have actually noticed something very important in my kids, compassion.  They feel for other people and want to help.  Someday one of our children might be the one who finds the answer to our prayers.  It's important for children to understand what we are going through so talk to your 8 year old.  She will understand more than you think.  Ask her what she might be able to do to help you.  Maybe she can make sandwiches for dinner or fold some towels for you.  She will feel a sense of pride and that alone can make you feel better.

I also wanted to tell you that I am taking prozac and pamelor and they have worked for me.  I still have pain but it's manageable.  The pamelor helps me sleep and I don't feel yucky the next day.  I was worried about not being available to my kids at night with the meds but that has not been a problem, they have woke me when they were ill and I can get up with them.  Sleep is really important so do what you can to get rest.  Do whatever necessary to get some quality sleep.

As far as your mother goes, if she will not help there is nothing you can do.  Don't worry about her for now, help yourself first.  I'm sure she loves you but like so many people, they just don't get it so don't stress about it.

Please take care of yourself and don't worry about being a bad parent, your children love you and don't care if the dishes didn't get done or the floor isn't vacuumed.  Peanut butter and jelly sandwiches for dinner three nights a week, who cares, the kids don't.

Take care!

Meggie

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