Have You Ever Felt Like You Are Struggling To Function And Everyone Around You Thinks That You Are Doing Well?

[Erin0313]

   Hi Everyone! Hope you are all doing well (for real and not faking it, lol)

  Here's my new frustration advice and shared experience would be very much appreciated!

  My hubby has been out of work due to abdominal pain for 3 months now. They haven't found the cause and I have been going to all of his doctors with him. Most of the time I feel very sympathetic towards him knowing how hard it is to be in pain and not know why.

At his last appt the doctor asked him to rate his pain and he said it was a 5. I thought OMG I consider that an ok day and even think it could turn out to be a good day! Of course I didn't say anything because everyone deals with chronic pain different.

While this has been going on I have been trying to work more hours to make up for his loss of income and the doctors continue to try and find a med for my severe fatigue that will help without making me hyper and nasty. I don't seem to tolerate stimulants, bummer. I am falling a lot and my pain is terrible yet I push and go to work and then take a nap and do house work/ dinner etc. and then start all over. On Friday I do my Avonex injection and even go to work on Saturday.

I feel like I am at the end of my rope physically and emotionally. Not sure if i am going to end up in bed for days or blow a gasket and say things that I regret. I know that I have to decide on what to say or what to change because both of those options are lose lose.

My family and co-workers think and have said that I am doing so well that they are happy for me. Part of me thinks good for me that I am "pulling this off". The other part of me wants to scream can't anyone see how hard I am struggling? Someone please tell me to take a vacation or something. Give me permission to stop trying so hard and just act like I feel.

Hubby manages to feel well enough to bowl, help his friends cut down trees and other social outings these days and then goes to bed feelings awful for a couple of days before rebounding. Still he doesn't work and only does a couple of chores around the house. He does tell me that I should lay down after I come home from work so maybe he understands a little but I am so torn between empathy and anger at him that I don't know what to do.

Any ideas? Is it a good thing to "fake the world out" and be a happy camper or am I only doing more damage to myself? If I keep this up will I just start feeling like I am doing great?

P.S. My 24 year old daughter has moved home and she is angry with her Dad for not helping enough and he is angry with her for not having her life in order at 24. They are like 2 peas in a pod and don't even know it!

HELP!!!
Hugs,
Erin :)

[Ufrustrated2]

could not have stated it better. Glad someone else put it out there in plain english.

>>"Have You Ever Felt Like You Are Struggling To Function And Everyone Around You Thinks That You Are Doing Well?"

yep, many many times.

[Erin0313]

JJ,

  Hope you are well!

  I have a silly question - laugh if you want to!

  Why does it say best answer with a cute little check mark by one of your posts? I love all of your answers but noticed today that you have a little check by one of yours. It's cute.

Hugs,
Erin :)

[Erin0313]

Jen,

  What a cool acronym (sp?). PIPS for peas in a pod. I am so going to call hubby and daughter PIPS now. I might even just call them that and smile like You two are PIPS and then not tell them what I mean. I'll get a kick out of seeing how long they can stand it, lol.

Mine go back and forth from oil and water to gasoline and a match (that's a new one too and I will use it) :)

Most days I don't even put on make up I save the energy and surprise effect for special occasions ha ha!

I'm glad that you have your horses and I am caring less and less as I talk to all of you wonderful ppl about the house being clean (but for safety I will have to continue to ask everyone to pick up the stuff on the floor !!! )

Hugs,
Erin :)

  

[MsWobbles]

Dear Erin,

I so admire you for your efforts on behalf of your family!  Working a 60-hour week and attending all your kid's activities??  How did you do it??  I never could have done it for sure, no matter how much I would have wanted to.  Right now, my home is a disaster and that's okay.  I would prefer it be perfect ('cause I'm a type A too) but I've learned I only have so much energy anymore.  Top priority is just getting through my 40+ hour work week for paycheck and benefits.  Second priority is a home-cooked meal shared with my son on a near-daily basis - our family time.  But if no energy, I just nap, and my son fixes tomato soup and cheese sandwiches later which is comforting to me.

You've been a great mom and it shows through your daughter's sympathy for your situation and her desire to help you!!  Treasure her efforts and maybe little by little she'll be taking over more of your jobs. But don't let her burn out.

Wouldn't count on much help from your husband.  Many husbands just don't seem to be there for us.  Mine was like that too.  I did all the parenting.  Many men can't take what we women have to go through.  When many men get sick, they seem to need way more pampering than we women do. (Sorry guys:  I know some of you are not like that, but many are).  

Provigil also gives me heart symptoms even though I was assured by my MD that it wouldn't.  Better not to risk heart issues on top of the rest of our symptoms!

You're certainly entitled to rant.  You've made so many sacrifices and have given so much to your family.  They are so lucky to have you!!

Hugs!

WAF

[Erin0313]

  Come to Jesus talks sure sounds better than the melt downs at my house :)

  Like you I am a type A even though I would like to think I am improving. Hubby is a type M for mellow. Nothing bothers him except when I freak out and my head spins while releasing nasty pent up thoughts. He's not fond of those days and neither am I.

I too see a therapist but she specializes in brain injury MS, dimentia etc. She helps me to see things the way healthy people do as well as reprogram the way I do things. Some things work and some don't but I love her. I think that I should see her more often but the insurance will only pay for so many times per year.

My husband and sister have both spent time with her and really like her but don't want to go back and "hog up my time". She did help my husband to better understand the way my brain works and why I am so tired. I still think he forgets and that's when I melt down.

I can't believe that you don't pull your hair out with a teenager a toddler and 10 hour shifts. You go girl! I couldn't do the toddler or the 10 hour shift for more then 1 day!

Hugs,
Erin :)

[sllowe]

Anything to make you smile :)

Yea, and if the good behavior doesn't produce rewards, we could always beg like dogs for our treats!

ha/ha/ha...
xoxoxo
shell

[Erin0313]

Shell,

   You are a funny one - send me my ice cream please and the sprinkles are my favorite!

   You got me to thinking though. If someone in our lives gave us these goodies every day as a reward like we reward good behavior etc from our children wouldn't life be better? Does that make us children? I might just ask my family to think of me as a child and see how that goes for a bit, LOL.

Take care and thanks for the sprinkles :)
Hugs,
Erin

[Erin0313]

Linda,

  We all walk the walk every day and most of us like you put on a smile :) but I hope that you don't want to cry everyday. Well ok let's me honest we all probably want to cry at some point in the day but there has to be happy times too. We just need to focus more on the good minutes. Did you notice I said minutes, lol. Days are way too much to ask for, maybe we could shoot for hours.

This is a great post because I have laughed several times which I didn't even notice that I hadn't done in months!

Also I feel so connected again to great people and am taking a lot of the advice to heart.

Take Care & Smile For Yourself Today Not The World Around You
Hugs,
Erin :)

[PastorDan]

Erin, you have three big dogs.  Did you train them?  They are far eaier to trian, especially if you got them as pups, than grown humans.  Repeat their instructions as many times as it takes, and eventually they'll probably catch on.  Meanwhile, give the daughter a Milk-Bone every time she makes dinner or feeds the canine crew, becauase a treat of some kind helps reinforce the verbal thanks & makes the memory of it last longer.

[JenEpicFarms]

Oh my, yes and Yes and YES (to all of the above :o)  My husband and daughter have PIPS (Peas in Pod Syndrome) - I always say forget the oil and water, those two are gasoline and a MATCH. DD admits to it, but DH is in total denial *sigh*.

As to the other..."But you don't look sick" is an oldie but a goodie [insert raspberry here]. Well, duh. What's the use of putting on makeup if you wind up looking like the 200 year old wheezing hag you feel like on the inside?? Call me Quasimota (ha).

My horses are my therapy and my house is a disaster area (and I'm not gonna care either, so there ;o)  Hope things get better for you soon girl!

- Jen

[Erin0313]

WAF

  Thanks for sharing :)

  I know that hubby might have a serious health issue and believe me I was afraid that they might find the big C when they did his bladder and prostate scope! I was in limbo land for about 10 years so I know how awful it is to look good and feel terrible and know that people are wondering if you are really sick at all!!!

You would think that after my experience I would be completely supportive and I am trying. The big difference is that while I went through my journey I worked 60 hours a week went to all of my kids concerts and sports events made dinner at 7:00 at night after the events, had tons of sleep overs with a house of hyper children and kept a very clean house as well as helping everyone keep track of the busy schedules. At night I would hurt so bad sometimes I sat in the bath and just let the tears flow. The next day I would get up and be glad to be alive ( after a little pep talk to myself) and watch be kids grow up.

I am happy that I was able to push through my pain etc. and be there for my children and share their events but it would have been nice if my husband had been more involved and maybe pitched in with the house, yard and other normal upkeep. At one doctors appt in my journey the doctor asked how my illness had effected our life and my husband told him that I didn't clean the house as often or as well and that I spent more time on the sofa. REALLY - I was on the sofa watching tv from like 9:00 or 10:00  to 11:00 at night after I had the kids in bed and as many chores as I could handle. I think healthy people spent more time on the sofa then me.

Sorry for what turned in to a pity party rant but thanks. Maybe now that I put that in type for you I realize that I am holding on to past disappointment and frustration in his behavior while I was in limbo land. I can't change the past and I don't want to behave the way he did while I was suffering limbo land blues!

Maybe everything really does happen for a reason. Fingers crossed that I will be loving and supportive through his journey and he will have the first hand experience of what it's like to really feel awful and look fine and travel this journey in limbo. We might end up closer because you really can't understand someone's pain or life until you live it.

Also you mentioned help from my daughter. She has started making dinner a couple of nights a week and feeding our 3 large dogs 4 days a week. I'm usually right there helping or talking to her but what a difference it makes to have help. I think she feels good pitching in too.

Finally - I can't take the provigil either because it makes my heart race and I get hyper. I already take 4 pills a day for tachycardia so anything that raises my heart rate is a no no.

Take care & thank you
Hugs,
Erin :)

[Lulu54]

Erin,
Hopefully you will take away from this two things:

1) you are not alone - this is a fairly universal complaint.

2) you control you and only you.  For your sake you must put yourself first for a change.


good luck in adopting this foreign approach- it isn't easy, but it is necessary.

my best, Lu

[Erin0313]

  Hi there newly wed! I hope that I didn't offend the male gender as that was not my point at all!

I have 2 grown children (one of each) and the daughter is just like her father and the son is more like me but without all of the "issues" if you will.

Since I raised both of them and they are different sexes what does this say about nature vs nurture?? I am totally confused on that thought, lol.

I love them all and when you love someone it's with flaws and all. I just get so darn frustrated that I can't communicate well with them. They know I love them but as for what I would like for them to do or stop doing, my husband and daughter remain a puzzle that i can't solve.

Hope you are doing well & thanks for the male perspective!

Hugs,
Erin :)

[Valerie64]

this is so insightful - teenagers, family and husbands are the same the world over,

my hubby's usually as good as gold but he's had a few weeks off work with minor knee surgery then a chest infection (man flu) and then a pulled muscle in his side, he took to sighing loudly last week, told me he was fed up with not feeling right and told me I wouldn't understand how that felt...

I looked at him for a few seconds and then said 'no, you're right, I wouldn't know how that feels'....

take care all

Val x  

[Guitar_grrrl]

Erin, I feel for you!  We all look so darned good, and we're really falling apart, and nobody can see it!  I like WAF's suggestions.  I hope your DH finds some answers and feels better soon.

JJ, I have a similar DH - an unemployed/semi-retired electrical engineer.  He goes up to his attic/man cave/laboratory and invents stuff that may or may not fly in the consumer electronics world.  You can't find more than 1 sq. meter of floor space in a 4 x 8 meter room because of all the papers and junk on the floor, and yes, his floor-to-ceiling  shelves are full, too, of components, books, oscilloscopes and other test equipment.  It's spread to the front room after a rare paid project last autumn.  I told him to get all that junk out of the front room because it's time for spring cleaning.

I make it my own policy to not vacuum more than one room in a day to save my own energy.  So I came home from work the other day to find him (gasp!!) vacuuming the front room floor!  He moved his junk around the floor to vacuum it, and then put the junk right back where he found it!!  I'm still laughing over it.

The only time I actually get him to get all that cr@p out of there is to throw a dinner party (I set a theme, and the guests take a course and prepare and bring it.  That way I only have to prepare one dish).  I think it's time for a party!!  

Or just hire one of the kids to take the whole mess to the dump!!

I was commiserating with a fellow MSer at work a couple of weeks ago, and she said, at the end of our conversation, "Well, you look good".  Can ya buhleeve it?!?  I replied - "We all do!"  

Sheesh - we get it even from our own kind...

Hugs to all,
Guitar_grrrl

[truelove47]

What a great post.  I walk the walk everyday putting a smile on my face,

In the real world, I want to cry.


Be well,  Linda

[Erin0313]

Ren,

   OMG my husband did the same thing with the IV. He walked around for days asking if I had seen his bruise from the needle.

  If I repeat a story or show him something more than once, he looks at me with that "i'm trying to be patient with you" look and says I know you told me. I have a lot of cognitive issues with my MS so I do repeat myself but I don't go around showing off my bruises like they are trophies.

One of hubbys favorite expressions is suck it up sally. I think I might just say it to him soon for the fun of it.

I'm sorry that you are going through this tuff time but it is always good to know that we aren't alone in this battle

You say that you are in the middle of figuring this out so if you actually do - please give me all of the answers, lol.

Good luck to you and your hubby
Hugs,
Erin :)

[Erin0313]

Terry,

  I 100% agree with letting them take care of themselves and taking care of myself first.

I see a neuro- psychologist and she gives me great advice just like you. The problem is I can't seem to stick with it.  I start with little things like taking a nap between work and family time or making myself not do anything but read a good book or watch TV for an hour. Only doing so much house work or not cooking every day.

It never lasts for long or I feel anxious while I am doing these things. Then I tell myself that if I am not relaxing or enjoying myself I might as well get some stuff done so that I will not have to cope with it later on.

It's not so much the dirty house as it is what it represents. A loss of my ability to do what I used to do without even thinking about it and the feeling that if loved ones were tuned in to my suffering they would want to do anything possible to help me. They can't make me healthy like I know they wish they could but they could show their support by helping in other ways.  

Maybe what I really want is to be the one they "take care of" instead of the other way around. Yuck! I don't like the sound of that. I think I will have to spend some time on that thought.

Thanks for your advice
Hugs,
Erin :)

[schnauzerlady257]

I completely know how you feel!  I am very much a type A personality and my husband is very much a type B.  He is still getting the picture that I cannot do all that I used to do and he needs to pick up the slack.  I am learning to let go some of the clean house concept, but it is not easy.

Between him and my teenage daughter and toddler son I would love to pull my hair out.  I swear that they cannot SEE dirt!  It does not exist in their little world.

Honestly, though, I do tend to hold things in and then explode.  The last few months my family and I have had several "Come to Jesus" talks as my friend calls them.  Usually after those they shape up for a few weeks and then slide back to their old ways.  GRRRRR

I have bgeen going to therapy for a few months and that is helping me let go of some issues I have.  I have also gotten my husband to go to therapy some so that he can gain some understanding that I just can't do it all and survive.  I spend many days frustrated and I work full-time 10 hour shifts, so I need the help.

Simplfy is what my therapist keeps preaching to me.  I find that on my work days I use my crockpot a lot and that helps.  If I make something and they don't want to eat it, I tell them to feel free to make dinner for themselves or keep their trap shut.  They usually choose the second option. :)  I am starting to delegate a lot more and if they don't do it, then I am not opposed to using guilt to get the job done.

Hang in there!

[PastorDan]

Oh, my, JJ!  I said not to expect more success than a normal family would achieve.  I recognise that we each have our own understanding of what that might be, but some of what you describe doesn't fit mine!

My late wife loved a British TV programme in which two older ladies -- sisters, I think -- went into the homes of people who had sunk into such unbelievable pits of depression, depravity, and helplessness that the messes were never touched by anyone with a thought of cleaning them up, but multipled exponentially until these homes were simply uninhabitable.  I'm somewhat confident that these brave ladies would enjoy a trip south.  I hope you can explain to your clan that you'll make contact with them if necessary!

Beyond that: Print this thread for the family.  They need to see it and read it, in the opinion of one middle-aged Yank parson.  If they don't like it, ask them to call me.  I'll PM my phone number.  Just ask them to call at a time when we'd likely be awake on both ends.

Also: Laughter is the best medicine.  And one more thing: I can certainly identify with the need to have things put back in their place.  My last home was notorious for that problem, but this one is much worse.  I've found the TV remote in the medicine cabinet.

Shalom.

[sllowe]

You ask: Have You Ever Felt Like You Are Struggling To Function And Everyone Around You Thinks That You Are Doing Well?

Oh yea! Add me on, daily!!!!!!!!!!!!!

You said it ALL with this title!

AND, it's no easy task! I think we should get mucho credit when we are able to fool the masses like this no? Treats, pats on the back, foot rubs, massages, ICE CREAM CONES W/sprinkles of course!!!!!!!

-shell

[supermum_ms]

I'll keep it brief because its nearly midnight here, but i've not laughed this hard for a long time, Pastor Dan you are a brave brave man indeeed, qudos really, i think your a sweety too!! oh just in case please dont take that the wrong way, i'm not laughing at you, but i wish wish wish it was that simple, just letting go and not sweating the small stuff, cause i do a tonn of that already.

How to explain what goes on in this house, well my dh is a computer engineer and my son is the classic absent minded professor, need i say more! Oh lets, dh remodelled the main bedroom hmmm must be 6 years ago, its not finished yet and i'm getting tired of the trim around the wardrobe doors falling on my head, but hey i let it go. He started remodelling the bathroom 4 years ago, its not finished yet and after 8 months of nothing happening, i picked up all the tools and stuff and placed it near the back door so he could put it in the garage, one day it arrived in the garage but I had to put it there. There is a lot more!

Little professor, is sent to his room to put away what he was doing, hour later the mess has grown cause he's distracted by a thought and started to read, mind you its never just one book, its the entire library because that thought led to another and another etc. Things this week thats found a home on the family room floor, at least 3 apple cores, a banana peel on the couch, 2 pillows from the lounge to add to the other 4 thats already in the family room. An entire village of lego, 1 pair of scissors oops no make that 2, 7 Artimus foul novels, 30+ comics, a neat pile of breakfast cereal, 2 chip packets, a pile of mini cars, a bag of spining tops, a slinky, a lemon clock experiment, a joke sign and its only wednesday! He's 12 and i've been trying to train him since birth lol!

I think i'm out numbered though it was much much worse when our Aspie daughter was still living at home, lol these 2 are a piece of cake compared to the things she did, i'm the poster child of letting things go, really its how i've stayed sane ROFL. I think for me the real issue is that i cant not fall over their junk, cant pick it up half the time for want of energy or almost fainting, i really need them to stop doing it but they just dont see it until i'm on my toush because of it lol.

I also really need them to put things back where they belong, i just dont have that photographic memory that i use to have, its gone and i cant find things. When i expect it to be in its place and its not, i dont seem to have the brain cells to work out where they could of left it, there is no point asking them, they havent a clue even if its right in front of them, i know i've tried it.

Well i feel a lot better, life is never boring at least lol

Cheers........JJ

PS my brother is not sure whats going on, he was told he has a serious bowel infection or inflamation and is on heavy antibiotics to see if that works, he'll know more in a few weeks.

[MsWobbles]

Erin,

My heart goes out to you!  Late in my marriage, my husband did the same thing as yours.  He had always been a hard worker and a very responsible provider, but he just went into a downward spiral when he was "downsized" (age-discriminated against actually - it does happen a lot in this country) and he took "two years off" just sitting around watching TV.  Then he decided to get another job which he did.  Maybe your husband will eventually come out of it.  Maybe he does have a serious problem that the medical establishment just can't find (like so many of us Limbolanders).  

Meanwhile, it's great that you are being tough for your family so that you guys don't have to live out on the street. But I agree with Lulu and I just can't say it any better than she did:  You also have to keep your own needs in mind - forget personally preparing home-cooked meals!!!  You have to get your rest - or else!!  The main thing you need to focus on is just keeping yourself strong enough to keep that paycheck coming in. If you have to "fake it" to keep working, then do so.  But still, you need rest, good nutrition, and some time out for yourself.  

I know what you're going through.  Now as a single mom, head-of-household, providing for myself and my 19-year-old who doesn't work, I sometimes have felt I just wouldn't survive it.  I have collapsed many times on my bed into a deep sleep without even fixing or eating dinner.  Only recently is my son really understanding how hard it is for me physically to just get through the day.  Whereas he used to really stress me out to the max with demands, altercations, and unwillingness to do chores, he now has become a wonderful helper, always trying to make things easier for me, offering to do more to help.  I think it's called maturity.  My son sees things with different eyes now.  Hopefully, this will happen in your family too.  Peace and love in the home as opposed to constant conflict, strife, and anger, maximizes the energy the person with MS will have.

You mentioned that your 24-year-old daughter has moved home and is upset your husband is not helping more.  That must mean, then, that she realizes how much you need help.  If it is not already happening, I suggest you ask her for her help and give her regular, specific ways she can help you every day.  Could she do the marketing, fix the meals, and do the dishes and laundry?  You might start her out gradually with just one or two chores, adding more as she becomes comfortable with them.  It would be wonderful if you could come home every day from work to a delicious meal already prepared and ready to be enjoyed as a family together. Get her a book on simple crockpot recipes that sound enticing - get her excited about it.  I would not encourage her feelings that her dad is a faker.  Keeping peace in the family helps reduce the drain on your limited energy.  I would just let her know that her father has a problem which has not yet been identified.  Keeping loving harmony will greatly help your condition.

Finally, I would not get down on your husband or try to judge him because he may really have a legitimate problem going undiagnosed.  I say this as a Limbolander for too many years who has something terribly wrong, going undiagnosed, being treated as a "crock" and meanwhile, stumbling, falling, weak, off balance with cramping, unexplained hoarseness, mental meltdown, blurred vision,extreme weakness and fatigue, and nighttime breathing issues.

Due to side effects, I am no longer able to use Provigil which once provided me the energy I needed to get through the workday and feel like a normal person.  But I did discover something recently that has allowed me to continue working.  I found it at the health food store - it is organic - and called "Organic Energy Shot" by Guayaki Yerba Mate.  I tried the chocolate raspberry flavor - tastes kind of like prune juice.  It did help me get through my workday with no noted adverse side effects.  However, any time you "borrow" energy from the future for the present, you need to "pay it back."  I find that on days when I use Organic Energy Shot, I do need to get a good 2-hour nap - or else!!  Actually, whenever I use it, I find I actually do have a deeper, more restful sleep that night.  There are other energy sources out there.  Some people are boosted a little bit by vitamin B12 shots.  Keep looking for your energy-booster.

Good luck to you!

WAF