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 :)

[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 :)