Fibromyalgia Thread

[Tinker'n'Fun]

 

[brighteyes]

I am watching Dr Oz about Chronic Fatigue Syndrome.

My positive is that I booked a cottage for a week with my BF and her daughter and my DS

Five nights at the beach and bbq and drinks by the fire and nothing else.

OMG I can't wait. It's not Disney but it will be relaxing.

 

[tiggspring]

Hi Guys sorry its been so long and that so many of you are in the midst of Flares!

My trip to Disney was a mixed bag. My two oldest decided the first two and a half days would be a good time to act up, complain and generally be downers at Disney. Until I finally broke down in line waiting for sorcerer mickey. I never do that in public! dh and I considered leaving, even emailed TA for details since all the "issues" made my Fibro a real problem. Kids straightend out when they saw the e-mail but I was so tired I never got to sit up late and enjoy our MK view We did salvage the rest of the trip and had a great time on the pirates cruise and Pirates leauge but it made me sad and angry to waste that much money the first few days. The kids had major "come to Jeasus meeting" when we got home and DH and I are now much stricter since DD11 seems hell bent on being a difficult teenager a few years early. They lost alot of activities and we will need to be on them for awhile until they realize they cannot take advantage of my Fibro just because DH was gone so much during the school year.

I've basicly had a headache or migraine symptoms since we left May 17 which is why you havent seen me. Gained only a few pounds at WDW despite eating 2 desserts and a snack every day! however crashing when I got home caused me to gain 8lbs..uggg The kids are now out of school and seem to be allowing me to rest in the mornings so I'm hoping I'll get back on track soon. not feeling negative but having trouble being positive when I have to tread water like this.

Sending Pain free vibes and Pixie dust to all

 

[tiggspring]

Hello everyone. I'm new here. My name is Sandy. I'm 35, married with 2 daughters (14 and 4). My DH (36) was recently (May)diagnosed with Fibro. He is devastated. Looking back over the last 10 years, I see the symptoms now. He has always been one to be on the move and could fix anything around the house. Now, there are some days that he can’t sit long enough to type up a report for work. It seems to have progressed SO fast! We were sure it was cancer at first.

The day he was diagnosed, we came home and booked our vacation to Disney. We are afraid he won’t be able to handle it a few years from now. He is taking some medication and it seems to help some days with his pain and fatigue, but he has bad days. He is no longer the same person. Maybe it is just because he is still struggling with dealing with his diagnoses, but he gets really depressed, which is SO not like him.

Our trip is scheduled for July 5-12. We just upgraded from AS Movies to PO Riverside because of the hot tub. We are celebrating our daughters 5th birthday while we are there, and have scheduled a ADR at Akershus on her birthday for breakfast and both girls are getting treated to BBB the evening we get there.

I'm concerned that my DH is going to get tired and get upset with himself for slowing us down. We have talked about going out early, and then coming back to our room for a couple hours in the afternoons (during the hottest time) and then going back out. But he says he is afraid of not being able to go back out. He said that napping/resting might only give him another hour. Does this sound normal to you?

thanks, I guess i just needed to talk.

Sandy Welcome

I have been to Disney the past two years with younger kids and found that major amounts of planning helped me alot.

I would highly recomend Ridmax. Not only does it help with the lines etc ( waited on average 5 minutes in May) but with younger kids it keeps them from being overwhelmed because everyone knows what they are doing next and that they are doing it to stay out of lines. Even my 4 year old got that! It will also help your husband pace himself. I find if I know where I'm going and what I'm doing I budget my energy much better than when there is any kind of chaos or confusion. I highy recommend sectioning off the parks so on one day do Fantacy land and tomorrow land the next do adventure and frountireland. Keep the resteraunts in the same area and use your smart phone or printouts of menus to decide what you are eating before you get into a resteraunt. That way the kids dont meltdown waiting for food and the mealtime chaos is limited. We found that either we need to go back for naps or eat a large sitdown meal for lunch or plan on two longer attractions in a row ie Mikey philharmagic and monsters laugh factory or carosel of progress so that I was sitting in air conditioning for a longer break in the afternoon. If you need any planning ideas let me know. I generally felt better on both trips due to low stress, less decision making and a pace that was 5-10 minutes walking 5-10 minutes standing and 5-10 minutes sitting. this seemed to keep me from getting as tired, stiff or in pain as at home.Plus no responsibilities maids and waitstaff...if I could only have them at home!!! its amazing how much stress just trying to make decisions or handling the small unexpected things puts on my brain! Hard to believe I was working on my masters when I got sick now trying to decide what to make for dinner is taxing...but so it goes.

I remember how hard the first few years were. When your family get in thier groove you will find that you can make the most of the time and energy that your DH has. Fibro is alot like childbirth the more you fight it the more it hurts. It takes time to learn how to ride out the bad days and sieze the good. I know the past year everone here has been a huge help to me in doing both! Thanks guys

Sorry for the spelling my heads not working to well today

 

[brighteyes]

Hi Tigg,

I am glad you finally got to enjoy the trip a little bit. I know that can be frustrating when the kids act up at Disney. I have a pic of my DS miserable on the Magic Express bus. He is meltdown city! lol We fought alot that first trip so much I didn't want to go back. he he

Sandy,

I wo uld agree with tigg that planning is key. We had the dining plan so wherever our ressie was that was the park we were in at that time or that day.

We picked a few "must do's" and beyond that had no expectations. Did them in order of closest to the entrance and worked our way to our ressie. It worked for us. The nice break in the air conditioning worked too.

 

[yoopermom]

Hi, again! I was diagnosed a year ago after a very stressful work situation caused so many flares the drs were worried it was something worse. I was laid off (probably for the best), rested for most of the past year (taking care of DH/DS is not always restful, but). I had applied for quite a few jobs this past month, but was worried about trying to go back to work f/t. Just found out that I was hired for a p/t 20 hr a wk job in my field, at a technical college, from 10a-2p M-F, which should be good, since I can sleep in on bad days, and still be home in time to make supper/ferry DS around. I'm just so happy to be able to *try* working again! This thread has been very supportive for me, even as a lurker...
Thanks!
Terri

 

[EDuke98080]

Hi Gals!

I havn't been around much either. Having a bit of a rough time with house stuff coupled with graduations etc and I don't get to read the boards. Having a minor flare but working hard to get back on track. Welcome to our new friends! Tink & Tigg good to see your back, hope things are going better. It got awefully quiet around here for a while. Terri ~ congrats on the job! I know you will do fine! Sandy your DH will be ok. He will find what works for him in treatment and have better days, it will be ok!

Catch up with you all soon!

~Erika

 

[Tinker'n'Fun]

 

[EDuke98080]

Erika, I am jealous, how do you remember all the posts... My brain is incapable of doing that anymore.

All is going as expected. Flairs have been numerous, and most likely just not going away, but I am dealing with it the best I can.

I really have to get my eating under control though. I don't eat all day, but then at night it is like a hunger monster takes over. I may ask DH to lock stuff up. It's like I tell myself I deserve it being in pain all day, but that is just me reasoning my way out of a stupid decision.

Everything else is going good. Both kids are out of school. Getting used to them roaming the house in the morning. So glad that my symptoms started now that they are older and can take care of themselves. Okay, enough rambling for just a post to tease Erika for her great mental capacities!!!

Hope everyone is going GREAT. Diane.

Diane,

I have the nighttime eating monster too! And the later I eat the longer it takes me to get to sleep. I do weight watchers off and on to keep things in check, it helps me control portions when I realize how many points my scoops and cheese and sour cream snack uses. Hope the kids are enjoying summer so far.

Take care all!

Erika

 

[brighteyes]

Hi all,

I would like to ask that all of you send me positive vibes and prayers. I am going through something very difficult with my family right now.

To facilitate my own healing and growth there are some past family issues that I need to tend to with my family. My family has reacted in ways that have been very hurtful and surprising to me. They have not been supportive and that has broken my heart. Namely, the only person really, my father.

My father is not the issue, just he has not accepted things that I have had to deal with in my life and that has broken my heart. SO I am confronting him with his denial and unsupportive attitude. If he doesn't get it, I will no longer be able to have contact with him or the rest of my family.

I also think that once I deal with this that maybe my fibro might improve. I believe the stress of not dealing with this had made my fibro worse over the last few years.

 

[EDuke98080]

Hi all,

I would like to ask that all of you send me positive vibes and prayers. I am going through something very difficult with my family right now.

To facilitate my own healing and growth there are some past family issues that I need to tend to with my family. My family has reacted in ways that have been very hurtful and surprising to me. They have not been supportive and that has broken my heart. Namely, the only person really, my father.

My father is not the issue, just he has not accepted things that I have had to deal with in my life and that has broken my heart. SO I am confronting him with his denial and unsupportive attitude. If he doesn't get it, I will no longer be able to have contact with him or the rest of my family.

I also think that once I deal with this that maybe my fibro might improve. I believe the stress of not dealing with this had made my fibro worse over the last few years.

Aw Bright - Big Hugs! Family issues are so difficult and sometimes it is so hard for others to understand things. I admire you for realizing your issues and for trying to deal with them to make things better for you. I have no idea what the problems are so I may be completly off base but, one suggestion I have is asking for what you need from your Dad. ie: I need your support and why. Can you do this for me? I have found that this approaech sometimes works where confrontation ie: why can't you support me? why do you deny this? puts people on the defensive and doesn't always end well. Sometimes it's all in how you approach things! Anyhow I will say some prayers for you for peace and resolution. Know that you have freinds here who care.

Feel better!

~Erika

 

[tiggspring]

Hi all,

I would like to ask that all of you send me positive vibes and prayers. I am going through something very difficult with my family right now.

To facilitate my own healing and growth there are some past family issues that I need to tend to with my family. My family has reacted in ways that have been very hurtful and surprising to me. They have not been supportive and that has broken my heart. Namely, the only person really, my father.

My father is not the issue, just he has not accepted things that I have had to deal with in my life and that has broken my heart. SO I am confronting him with his denial and unsupportive attitude. If he doesn't get it, I will no longer be able to have contact with him or the rest of my family.

I also think that once I deal with this that maybe my fibro might improve. I believe the stress of not dealing with this had made my fibro worse over the last few years.

Bright I'm so sorry ! As we have shared in the past, my family is quite difficult too so I completely understand where you are at right now. Whenever I have really needed them emotionally and physically my family have been MIA. With my DH help I have come to realize I am an orphan with all the complications of a large family. They are not bad just very immature and they dont have the EQ ( emotionaly quotient) to be of any use to anyone even themselves. This can take a great emotional toll on you. Half of my family believe that illness is a punishment from God so how do you argue with God? Must be my fault therefore they shouldn't get involved.

I had an Aunt who I was very close to that I could call and vent and share the crazieness with. She died 8 years ago of breast cancer and I miss her terribly even having one family member that understands your family is such a big help. Do you have even one person who sees what you are seeing? How does your son feel. My kids already comment on my parents and I have tried to let them come to their own conclusions in these relationships.

Have you ever read the book "toxic parents" it may help some also there is a book on EQ that might give you some insights. There are some great books out there that can validate your pain so you dont feel crazy. I dont know how many times I'd be in a situation and I'd think "that cant be right did they just do/say that?" and they would act like nothing happened no emotion good bad or otherwise. It made me feel crazy until my Aunt would confirm it for me.

You are completely right about this affecting your fibro. My body way overreacts to stress of any kind and parnets can bring out the big guns! you need to keep yourself as healthy physically and emotionally as possible. You may have to mentally realize that you and your son are your only "real" family and you two are starting a new family tree so to speak. This is how I have had to look at my family. It was just unrealistic to expect them to change so I had to. I have used the 11hr distance to my advantage and managed to create a relatively healthy relationship with my parents because I no longer need to deal with the crazy stuff that happens. It has enabled me to maintain enough or a relationship that my kids can know their grandparents on some level. This would not have been possible if we stayed in New England. My sister only allows for her DD to see my mother in public and my mother is lucky to have that. If this is not possible for you emotionally then do what you have to do. Just know there are people out here that understand where you are at and have you back



IMHO the problem is your Father. I dont know the specifics of your situation. It could be that your DF just doesnt know how to connect with you on this issue-which is his problem. It could be a sort of neglect and neglect is just as abusive a physical abuse. I have heard many abused women say they wished he would have hit them instead of being completely silent then they would at least have acknoledgment of their pain. It can be very painful to admit that our parents do not love us in a healthy way. Is it possible this is the case in your situation?

Sending you lots of good vibes so that you may find the right path for you and your son.

 

[tiggspring]

Aw Bright - Big Hugs! Family issues are so difficult and sometimes it is so hard for others to understand things. I admire you for realizing your issues and for trying to deal with them to make things better for you. I have no idea what the problems are so I may be completly off base but, one suggestion I have is asking for what you need from your Dad. ie: I need your support and why. Can you do this for me? I have found that this approaech sometimes works where confrontation ie: why can't you support me? why do you deny this? puts people on the defensive and doesn't always end well. Sometimes it's all in how you approach things! Anyhow I will say some prayers for you for peace and resolution. Know that you have freinds here who care.

Feel better!

~Erika

Erika is completely right this is a good place to start. sometimes its hard to contain the pain we feel when dealing with family.

Erika hope all is well!

 

[brighteyes]

Well basically to answer the question, I was abused when I was young by someone close in the family. When it got found out, my FATHER thought I was dreaming. He basically did not believe me or did not want to deal with it and was more worried about it affecting his wedding to my now stepmother.

All these years I thought someone else did not believe me, which would have been understandable. Now I find out the opposite is true. It was my father who doubted or did not deal with it. He was worried about this person losing his job instead.

I have just found out that my father made this person executor of his will.

"Yep, people step up and abuse my daughter and you can handle my will if I die." That is what it feels like to me. Not dealing with something is one thing, but to condone it is entirely different.

My mother, bless her heart, mental illness and all has always stood up for me.

I am to the point that I will not see this person any more. For many years, I have still seen t his person at family gatherings and choose not to anymore. Which means that I again lose out on seeing my family.

 

[tiggspring]

Well basically to answer the question, I was abused when I was young by someone close in the family. When it got found out, my FATHER thought I was dreaming. He basically did not believe me or did not want to deal with it and was more worried about it affecting his wedding to my now stepmother.

All these years I thought someone else did not believe me, which would have been understandable. Now I find out the opposite is true. It was my father who doubted or did not deal with it. He was worried about this person losing his job instead.

I have just found out that my father made this person executor of his will.

"Yep, people step up and abuse my daughter and you can handle my will if I die." That is what it feels like to me. Not dealing with something is one thing, but to condone it is entirely different.

My mother, bless her heart, mental illness and all has always stood up for me.

I am to the point that I will not see this person any more. For many years, I have still seen t his person at family gatherings and choose not to anymore. Which means that I again lose out on seeing my family.

Bright

I'm so sorry!!! This happen so much in families the victem gets blamed or left out in the cold. It is a big reminder of the abuse and a unspoken condoning/forgness for the offender and to put him in the will would be bad enough but to put in charge!. You really do need to stay away for your own dignity. I canot trust my Mother with the saftey of my kids for a similer reason she always picked whatever man would prey on her children.Except for my DF who she left for a loser he was difficult to be sure but not a gambler, drunk or abuser. My DSis had to inform my mother she could no longer see her grand daughter when she took her to visit friends/neighbors at a local fair. No biggie except one of them abused my sister and my Mother knew it. When pushed my mother said they were good neighbors who mowed her lawn and were interested in my DN giving my mother gifts for her etc
...I bet they were interested!!!

Is there anyway you could set up some family gatherings where you chose not to invite this person and tell everone he is not invited? I realize they can invite anyone they want to their get togethers but will they respect your wishes? At least you could have a celebration here or there that makes you feel part of the family. Otherwise I would not allow this abuse to continue. The fact that you want this to stop is a sign you are well on your way to healing. We are only as sick as our secrets

You are right to wonder if you will feell better. In my experience it is the anticipation of a posible confrountation that is always the worst stresswise. If you set a reasonable boundry and they resfuse to honor that then you have done everything in your power to be part of this family. If they dont honor it then they have shown you where they really stand. Would you want these people in your life in any way if they were not family? If you are like me you feel guilty, responsible for keeping the familiy together. But saftey is a right. Youu have the right to feel safe when you are with family and as a parent our primary duty is to the saftey and wellbeing of our children to the best of our abilities. It is not to cover for those who hurt our children. You are doing the right thing trying to settle this once and for all. No matter how it ends it will be a relief to get this out of your life.

You are in my thoughts

 

[Tinker'n'Fun]

 

[brighteyes]

Tigg and Tinker.

Sorry I haven't replied to your posts, I have been just so tired lately. I have been sleeping without sleep meds too. But today just feel a real brain fog.

Yes Tigg, I agree I have to do what is right for me. It is so hard cause I love my Dad although he is a selfish person, but I see where he does try to help me in other areas. BUt this is a dealbreaker.

I called him the other night and asked him to come to counselling with me and bring mystep mom. He said yes. Just asked if I had issues I was working out. I told him I know you dont believe or like counselling but my son and I do and I would like you to come to discuss some things. So just like that he said yes. I warned the counsellor that I am very angry at him but she is helping to wait and see if maybe there has been a change after all these years or is just his denial.

However, I am not going to family gatherings with this person present. I just don't feel I can do it right now. If we don't see the fam at christmas we may just have to go to Disney.

My appointment is Tuesday so I will let you know how it all turns out. Thanks for your support, responses and caring. I truly believe that this will be llife changing and freeing for me finally after all these years.

In a way, no matter what happens, I feel that this is going to be a good thing for me.

 

[EDuke98080]

Tigg and Tinker.

Sorry I haven't replied to your posts, I have been just so tired lately. I have been sleeping without sleep meds too. But today just feel a real brain fog.

Yes Tigg, I agree I have to do what is right for me. It is so hard cause I love my Dad although he is a selfish person, but I see where he does try to help me in other areas. BUt this is a dealbreaker.

I called him the other night and asked him to come to counselling with me and bring mystep mom. He said yes. Just asked if I had issues I was working out. I told him I know you dont believe or like counselling but my son and I do and I would like you to come to discuss some things. So just like that he said yes. I warned the counsellor that I am very angry at him but she is helping to wait and see if maybe there has been a change after all these years or is just his denial.

However, I am not going to family gatherings with this person present. I just don't feel I can do it right now. If we don't see the fam at christmas we may just have to go to Disney.

My appointment is Tuesday so I will let you know how it all turns out. Thanks for your support, responses and caring. I truly believe that this will be llife changing and freeing for me finally after all these years.

In a way, no matter what happens, I feel that this is going to be a good thing for me.

I am glad that he said yes and wish you a productive session on Tuesday! I will be thinking of you and sending good vibes.

Take Care.

~Erika

 

[brighteyes]

Tigg. That is awful what you and your sis experienced with your mother. I just don't understand this. I think I would be in shock, denial if anyone did anything to my DS but I would be damned sure that they were not allowed near my DS again. Even in denial there is that little voice inside your head saying, "What if...?"

I am sorry this happened to you, it is hard when family doesn't stick by you. I just don't get it. Really, I don't

It just shows that I am not alone in this situation. I am not unique. Happens far too often I believe.

Thank you for sharing. I appreciate it. It really helps to get other's perspective on it that are not my BFF's to stand by me no matter what. lol

Thank you again for being you! You guys are great!

 

[brighteyes]

I am glad that he said yes and wish you a productive session on Tuesday! I will be thinking of you and sending good vibes.

Take Care.

~Erika

Thank you! I will need courage by the time Tuesday comes around. I t hink t his is absolutely the most difficult thing I have ever done in my life.