Had to leave the party

Meggie, it took my DH a long time to accept the fact that I had something that was not going away. At first he thought he had to fix me, that got on my nerves after awhile. Then it took time to educate him, I was dxd five years ago. I went through a lot of stages myself before we got to where we are now, acceptance. I hate it and I'm sure he does too. It has meant more work for him cause I did everything in the house and yard and now I can't. He doesn't keep up with the yard like I use to. He doesn't do anything as good as I use to. I can see the yard right now and would love to go out and do a better job than he did on it but I can't.

It's not always a bed of roses around here I get frustrated with myself for not being able to do what I use to and he gets tired of not having as much free time as he did. We both get testy sometimes and do a little venting but then everything is okay. Marriage is a work in progress during the best of times.

I know all about the ego stroking thing with men. Look at what I did aren't you proud of me attitude. Don't ever expect him to get to the maturity level you are cause it's just not going to happen. Mine is 65 yrs old and still a little boy in an old man's body. I'm so glad he doesn't get on here and read what I write about him, hehehe.

luv and hugs

Marlee

Dear Meggie,

1st let me introduce myself.  Hi ! I'm Karen,glad to meet you!  Now I will let you know that you are so not alone on any of this.  I too have a hubby that can be difficult.  I love this man completely but he can get on my nerves and yes even be hurtful.  And I know how hard it is to feel like your letting your family and husband down too.  I have always been a person who was a caretaker of all and the fixer in the family.  If a holiday meal was to be cooked it was me doing the cooking and planning and same for birthdays and Christmas too.  And if anyone in my family needed a favor or help with something I too was there to do it and also the person who was the mediator of all arguments and fallouts.

For the most part I liked this job.  I loved taking care of my family and it gave me great pride and joy to make everyone happy wether it be a huge Thanksgiving spread or beautiful and dramatic decorations for Christmas and Halloween.  Then, over the years disease and some terrible accidents brought chronic pain into my life.  Still for the most part I held it together.  I got through a terrible and violent marriage and met Jayson and decided that I was going to start this wonderful new life with him and my daughter and a beautiful new grandson.  Then I fell down a flight of stairs and broke my back and if that wasn't enough with the chronic pain I already had before the fall I had to have several surgeries,one of them almost killed me and put me in the ICU on a vent for a week.

Still as I somewhat healed I thought no problem, I can go back to doing everything I had my whole life,sure with more pain but with medication I could handle that.  Just do whatever needed to be done and hardly ever ask for help and if it knocked me down for a day or so that was OK too because I always knew that I would re-charge and be ready to go the next round.  Then it got so I wasn't snapping back like before,that the medication I was on wasn't helping so much anymore and I had widespread pain that rolled my eyeballs up in my head some days and hurt so much it physically made me more nauseous then I had ever felt before.  There were times when I could barely walk but I would still,hunched over in pain try to get the job done.  I remember begging God to please just help me that this meant so much to me and after everything I had been through over the years not to take who I was away from me.

But my prayers went unanswered(or so I thought) and knew that I was on my own.  I started falling back on my housework and getting farther and farther behind on most things in my life.  I thought that after all the years of taking care of my family that they would now help take care of me.  How could they not see that I was struggling and step up to lend a hand?  But they didn't notice or they just didn't care.  They continued to take advantage of the person that I am and never let up on their expectations of me.  So what did I do?  I about killed myself trying to be everything to everyone in my life. I was diagnosed with fibro and had 2 strokes in under a year and my family said "oh we are so sorry and oh we will so anything we can to help"and for a time,a very short time they made some effort but they fell right back into their ways of asking me for favors and taking care of the now 4 grandchildren I had and my husband was no exception.  He still expected his dinner every night and on his days off he still wanted me to travel into the city for the day and walk for miles on end or go to the mall for the day,walking and carrying heavy packages till I was about to drop(we don't have a car so going into Seattle or even to the mall is an all day event).

And then I found this place.  These wonderful ppl were the first ones to even seem to really care about how I was feeling or how much I was hurting myself with all I did.  They understood the pain and the pressures of trying to continue your life like nothing was wrong.  They care so much that gave me a big kick in the rear and told me that I had to slow down and that these ppl that are my family were sucking the life out of me and that is not someone who loves or care about you completely.  Talk is cheap and actions speak louder then any words.  They told me that I had to take a stand and put my foot down and it was ok to feel the way I did and most of all is wasn't my fault.  I had done as much as humanly possible to keep everyone happy but there was no reason why they could not do for themselves.  My family was being lazy and rude and uncaring.  And to hear that from someone else was a hard pill to swallow even though I had felt it many times and was becoming very resentful for them being so unappreciative and selfish.

I had tried to talk to my family many times about how things had changed and how I now was the one that needed help.  I told them how I just didn't feel good most of the time and how doing the things for them that they kept asking and expecting of me where just too much for me and not fair to even ask of me.  But it for the most part fell on deaf ears.  If I would say no to something I would get attitude and they played me like a fiddle with making me feel guilty for being sick or in pain.  I would never do that to them and never had.  After coming here and joining this new "family" I started to feel stronger in my efforts to stand my ground with my family.  It has been a hard journey getting as far as I have.  I know ppl here still feel like I am not doing enough to take care of myself and maybe am still wimping out and giving in too much.  So I have to stand my ground so to speak even here a lil bit.  I really have gotten stronger and although still not at where I need to be it is a process to break out of old routines and habits of overdoing and paying for it in the end.

I know in my heart that my family loves me but I also know now that there was a part of me that doubted that and was afraid that if I didn't meet everyone's demands that they would care for me less that the things I did were a huge part of who I was to my family and if I couldn't do those things anymore then what good was I to anyone anymore?  But I am a good person and a loving person and so are you Meggie.  It is time now for our families to step up and help take care of us and themselves.  I mean really,what good have we done by doing everything for everybody but to make them so dependent on someone that they would even think about asking so much of someone that is sick and hurting only to get what they want?

I am sure that your husband does love you as I am sure that others that are close to you and have depended on you for years care for you too.  But sometimes you have to give them a big wake up call.  You have to make yourself heard and stand your ground to make sure that you stay healthy and as pain free as possible so that you can continue to have as good as life as possible with this horrible disease.  I know now that God has been with me this whole time but I was being just as demanding with Him as my family has been with me.  Instead of seeing that He was here to guide me and help me through tough times I expected Him to do it all for me.  I am not saying to never do a thing for your family again.  On good days you can do plenty you just have to listen to your body and know your limits.  And your family has to learn to see you through different eyes.  They need to learn the signs of when your tired or in pain and not ask you for things they can do for themselves.

You are not being selfish in asking for and expecting to get what you need from you family.  I once heard someone say that instead of being selfish you are being self-full.  All you are asking for is them to help you be healthy and as pain free as possible so that you can continue to be there for them and be a part of the family.  Right now your husband is being selfish and childish.  He doesn't want to give up having you take care of him.  The physical things we do are just a small part of who we are Meggie.  Who we are is someone who is caring and loving and supportive.  Being a good wife and mother doesn't mean your house is perfectly clean or that you are the one that always has a meal ready.  A good wife and mother is someone who gives as much as they can and not a bit more then that,someone who is there emotionally for their loved ones and is caring and kind.  And giving as much as you can doesn't mean doing chores or meeting someone's demands past the point of what your body or mind is telling you that your done for now.

It might take some time to get your husband or even your kids to jump on the bandwagon and help out or do for themselves without whining or making you feel guilty but they will come round if they truly love you.  And as far as men are concerned they can get with the program and show you as much love and respect and help as you have always given to them or the can hit the bricks.  I have been with Jayson for 8 years now but in my previous marriage I was with him for 13 years and I told Jayson if I can walk away from that I can surely walk away from you.  It takes love and compassion on both sides to make a marriage and you deserve all the love and respect and compassion you give to your husband returned to you.  So hang in there Meggie.  Stand your ground and take care of yourself and we will get through this together.  Hey I am a work in progress too and so is my husband.  Just don't let him take too long and who knows maybe when the housework and laundry of piling up around his head and he gets hungry enough he will finally "get it" as one of our members likes to say.  Take care Meggie.

Soft Hugs,

QT Karen

Hi Meggie, Karen and everyone else on this thread (yes, I too cried as I read Karen's thread).  I recently took my pain meds, so hopefully I won't ramble on.

This site has been a Godsend to me.  Meeting ppl with the same problems and feeling the warmth of all the {{hugz}} has been a huge help to me - especially since it gets more and more difficult for me to get out.

I suppose I am lucky, as I wasn't "struck" with chronic pain (most likely Fibro - still trying to get a dx) until a year after I met my second husband.  At first (like most men) he tried to "fix" it (that is what men do).  The only one beating myself up is me.  I remember doing so many things that I can no longer do.  I try to "bribe" myself that when I can get myself "better", I can get a horse - have something to look forward to.  I will never give up on that dream.

My husband has been my rock.  He is so understanding.  He calls me from work every morning (after 10am) to see how my day is starting.  If I'm not doing well - he just tells me to take it easy that day (talk about relieving my guilt).  I know I can get at least one or two loads of laundry done and that keeps him happy.  Sometimes I can vacuum, other times I can't.  I have my groceries delivered (usually after hubby gets home from work so he can help put away).  My husband does 95% of the cooking - no complaints.  I also still have an 18 year old son at home who is usually willing to help out.

2 years ago, I would get up around 7am ish - take a shower and drive him to school and have the rest of the day.  Now, I'm lucky if I wake up by 8am and hopefully don't fall asleep again (usually I do).

I've missed out on weddings and other events, my son's football "away" games.  It makes me feel terrible and guilty.  I went to visit friends for 3 days in the next state over where I moved from.  I slept almost the whole time.  It felt like a waste of a trip and money.  My son still doesn't drive and doesn't understand that it is so difficult for me to get up at the "drop of a hat" to drive him to work.

Okay, I know I'm rambling.  I have a somewhat good "support system" through my health company - especially my Pain Person.  I've taken Pain classes, etc.  I've learned that I not only have to grieve for the family members who have passed away, but I need to go through the "grieving" process for the part of me who've I've lost.  I can't work.  I can't graphic design (loved it - it was "me")  So, who am I?  I'm still learning that one.  I've heard that when we lose something, if we've learned from it, than we didn't "lose" - we "learned".

It is difficult to stand for any length of time and cannot sit for any length of time - but - i have a wonderful padded seat designed to help me sit comfortably.  So, after 5 years of not going out to a movie because I can't sit that long, I take my "seat" with me and enjoy the movie.  To heck with what anyone else thinks!  I think it is adjustments like this that we have to learn to make.  As for missing out on get-togethers, yes, I miss it, but I've learned to live without.  My husband never makes me feel guilty for it.  When I can't drive my son 6 hours round-trip to check out a college - my husband comes to my rescue and does it for me - not a complaint out of his mouth.

So, there are loving understanding men out there.  Maybe those who don't have understanding "mates" can meet at pain classes, or maybe through here(?) - who knows?  Just know that you are not alone - that in itself is huge.

((((((((hugz to all)))))))))

Lisa

Karen, your strength gives me hope and determination.  I feel like you are describing my life and I am at the point now when you had slowed down from the pain.  I worked very hard to lose 65 pounds and then fibro hit and I have slowed down.  I have gained 23 pounds (maybe more but I don't want to step on the scale) and just feel down and ugly.  Putting on make-up (I'm a bare minerals lover too, have more than I need) helps me feel a little better but somedays nothing helps (maybe I need to buy more makeup, ha ha).  I am so happy that I have everyone here to help get me through this.

I was happy to hear that you had a good visit with your mother.  It sounds like she really wants to try and be more helpful.  It's just so hard to let loved ones down but you are proof that you can say "No" and things will be ok.  I don't know how many times I need to repeat that to myself but eventually I will get it.

Karen, write as much as you want.  I enjoy your posts and find them very helpful.  I feel like you are inside of my head (strange I know).  We must have very similar personality types.  Anyway keep talking, it helps all of us.

Lisa, you sound like my 13 year old daughter Em.  She will do anything to get a horse.  I think it is great incentive to keep moving.  Em is cleaning my house everyday, except Mondays (she goes to the barn to work for the day) and I am paying her three dollars for everyday she cleans.  It has been such a big help and gets her one step closer to her goal.  Right now that is to get more riding lessons.  I told her we both win.

Everyone have a wonderful day!

Meggie

Geez, I don't know what happened to the end of that last post.  Figures - it was the first time I decided not to "proof" it first.  I do remember what I wanted to say to Karen.

I know how difficult it is to deal with your parents as they get older.  I lost my mother, my father and my best friend within 5 months of eachother, and then 3 months later, I packed up and left the state I had called home for the last 37 years.  And, I'm only in my mid 40s.  I'm not sure why I didn't end up in the "looney bin," but I must've come close!  So, even though they can be a "pain", try to cherish the time you have with them.

We married the same man?  who are you and where do you live? LOL One of the books I have on fm/cfs asks if you have ever noticed that you tend to surround yourself with people who drain energy.  at first I thought that didn't apply to me but the more I thought about it, the more it seemed true.  My husband is the world's worst at handling stress.  I want to help him cope with this better but I don't have the energy for it.  I empathize with you.

Welcome to our new member who seems to have married my husband.  Yes, I think he must be moonlighting at your house.  Stick around, maybe the two of us can learn together how to handle our husbands.

Lisa, thanks for the good site on the seats.  I meant to ask in my last post where you got them.  I was on my nightly walk and I remembered.  I'm a little slow today.

As far as the mineral make-up goes.  I don't think it is for everyone but I needed to add a good moisturizer because my skin was so dry.  I also am light on the foundation, I prefer the natural look.  I think what I like best about it is I can't feel in on and my skin does not clog up.  Any make-up (or anything for that matter) that makes you feel beautiful is the right one. 

Lisa, 46 and look like 20 something; I'm jealous.

Everyone have a good evening!

Meggie

Lisa,

I wasn't offended, I just wanted to make sure that you know that it was meant to be a compliment.  I have been lucky so far, both of my teenagers have not been much of a problem.  They still like me .

Have a wonderful day!

Meggie