my plate is full

[garboon]

Hello all,
I just found this forum and thought that at least posting here may help to relieve some of the stress I have been feeling. My wife has a condition that gives her chronic pain. We have been to several doctors which led to a couple of trips to Mayo clinic to see one of the few doctors that specializes in this disease - erythromelalgia(http://www.erythromelalgia.org/ for more info). Bottom line, there is no cure and none is expected. We were told that this is something we will have to live with.
Now we throw in the complications, we have a 2.5 year old and I have a very demanding job that requires in-depth analysis of complex systems, also my wife also has panic disorder and agoraphobia. So the situation as it now exists is that we have placed my daughter in daycare 5 days a week, more than either of us would like, since wife is unable to do even the simplest of chores or tasks, spends many hours a day in bed, does not drive and never leaves the house. I do just about everything, laundry, cooking, dressing and bathing the child, household maintenance, financial activities and grocery shopping(yuk). Now I was never the best housekeeper and being the absent minded professor type, barely kept up with myself when that was all I had to worry about. I am having trouble coping with day to day activities, my day starts at 6am and often ends after midnight. Every moment of it is filled with something and I am having trouble just finding the quiet time required just to keep me sane. I used to enjoy solitude from time to time but these days, that has become an extremely rare commodity. About the only thing that keeps me going is the smile and laughter of a little girl whom I always try to put on my best face for(a tough act at times). I really feel like a single parent, but that would be easier than where I am because I also have to comfort, console and care for wife in between chasing the toddler around. I am an optimist and always look on the bright side of things, however wife is now becoming ever more cynical and depressed and I am having a hard time with her chopping my mood down to size when I do feel ok. I made some appointments with a counselor so that I could try and get this off my chest a bit, but guess what, wife could not watch the child for even the amount of time I needed for a therapy session, so I ended up taking the child with me and the whole thing just added more stress.
I have been mighty close to the end of my rope a few times in the past months with thought of just driving off into the sunset never to be seen again but I do love them both very much and could never really bring myself to do it(but the thought still give me solace).
So here is my vent, it is helping a bit just to unload it on this forum. So whenever you are bored and can't find something to do, enjoy it to the fullest, because that moment is just a blip on horizon for me at this point in time. Thanks for listening.

[mpalmer118]

I am sorry you are going through such a rough time. I don't have any magic words to make it better, but know that you are not alone and although it is so hard right now you can not see an end in sight, it will get easier. Although my situation is different, I know how feels to be strechted so tight you don't think that you can handle, but somehow you do.

A few questions to ask (you don't have to reply unless you want to):
Have you asked family or friends to help at all?
Can you afford a housekeeper to come in once or twice a week?
Will your wife go to counseling with you or alone?

I know I had trouble accepting or asking for help for a while (I don't now, so don't offer unless you mean it, 'cause I'll say yes:D ). Take one day at a time, and don't feel guilty if you leave chores undone, they will still be there later.

One last thing there is a very active forum here for chronic pain you, and if your wife is willing her too, should post there as well. I am sure you will find support and maybe some coping ideas.

(((((hugs)))))

[CanRelate]

garboon:

It sounds like a potentially very painful disorder, and an extremely challenging situation for all of you!!!

I cannot even imagine what it is like within the vortex of the overwhelming reality you have just detailed. And hearing your fierce love as well as the weight of it all....

Did the panic/agoraphobia predate the physical disorder? Has she/is she getting treatment for those? THese could also further magnify the physical pain she is enduring from the physical disorder. Plus adjusting to a chronic condition really requires talking/processing feelings.....so we do not lose sight of "living" and enjoying life as best as we are able.........like taking in the brilliant grin/giggle of your daughter.

Is there any potential decrease of some pain with drug and other therapies which give some small relief to PN, RSD, etc., sufferers? I did not see anything about that on the website....

My prayers for you and your family for balance, strength, and peace as you adjust to this curveball.......

Regards,
CanRelate

[garboon]

Thanks Mary,
I have some close friends but my wife seems to take issue with something in each of them, she has no close friends outside some folks she chats to online(others with chronic pain). I have a Sister who lives about 2 hours away who has been very helpful and supportive. My wife's family, although large, has been supportive somewhat but not really helpful(there is along aweful story here but I will spare you the gory details). I have brought up the idea of having a housekeeper but wife does not want someone in the house when I am not here. She has also been in therapy for years for the panic disorder and agoraphobia(guess who takes off work to drive her to her appointments). I do take things one day at a time and do my best to remain cheerful and supportive - thanks for pointing out the chronic pain forum and the hugs. It feels better just to unload a bit ;-)

[joy]

Hi garboon. Welcome. Sorry you need to be here but glad you have sought help. Never feel like you are alone. Braintalk has been a wonderful support place for many people, myself included.

I am sorry that your family is having such a difficult time. Your honesty about escaping, not the right word but yet the perfect word, makes me cringe as I wonder what your wife might be wishing. I have had a small taste of how bad her pain must be and also at the same time have a daughter that must be about you and your wife's age have serious health problems and also with a small child. My daughter's wish was to go to sleep and never wake up!!

mpalmer118 gave such good advice I really have nothing much to add. I hope it gets easier as I understand all to well what can happen to a family that is carrying such a heavy load. Please keep us informed as to how things are going. I hope I have not said anything to offend as that was not my intentions. Your health is important to your family. At this time I realise she is not capable of taking care of herself or the baby. How long has your wife been in pain / how long have you had this schedule of work and taking care of baby? I'm sorry if I missed that and if you don't want to answer, that's okay.

[JAVISI]

Gaboon,
I can understand your feeling overwhelmed! Life can be so hard and so unfair. We just don't have the answers as to why yet! I am on the other side of the fence, I am the sick one. My ex now thought of me as a burden because I was unable to pay all the bills any more. I was the one that walked out the door, and felt freedom and love from my family, I know that I am lucky in that respect.

Having a chronic illness can sure make you feel like a burden to so many people. Maybe your wife feels that way and it is so easy to spiral down on that dark hole and not want to comwe out! This place has been such a stress releiver to me. Knowing that I am not alone helps a lot along with being able to vent and know that you are being listened to!

I sure wish I had some answers for you. All I know is that we all need some alone time. You will be no good to your wife and child if you run your self ragged. Eventually you will become sick and then who would take care of things.

It is important to keep your dreams and hopes alive! THERE IS A POST CALLED WHAT ARE THE THINGS THAT MAKE YOU HAPPY UNDER THE EMOTIONAL THREAD. i WOULD ENCOURAGE YOU TO READ SOME OF THE POSTS! It really helps me to realize that even some of the smallest things can make you happy. I try to post everyday, just so I am reminded that their are so mny small things that can make me smile!

Hang in there and keep coming back and encourage your wife to come to this site. For me it is my life line!

Dreaming Big and Reaching for the Stars, Javi:)

[Buttons2]

garboon I'm glad you have found us! Sounds to me like you might also benefit from the forum for caretakers on here.

I have a bit of different attitude about your situation, this might sound harsh but here's my take: your wife seems to be using her condition to cause you more grief. You're only one person. For her to say she doesn't want anyone around cleaning or helping with the multitude of household chores is just plain selfish (in my opinion). You cannot continue this way or you will come to resent her & her condition. That's just normal human behavior. You simply must have help & you also must have some of that quiet time you cherish.

There are many resources available today to help you. Please take advantage of them! We can help you with ideas/suggestions regarding that.

Think about this for a second: your toddler has lost her mommy being there for her,and now her daddy is so busy he's burning both candles. She's now in a daycare & will be meeting other children that have mommies who are not in constant pain & leave the house/drive as an everyday normal occurance of life. She will notice this & wonder about her own mommie's actions.

Hopefully you have had the good fortune of finding an excellent daycare,don't go on a guilt trip over her being there 5 days per week. In today's world this is the norm more often than not. She probably loves the interaction with other kids right?

Don't allow your compassion for your wife's pain to keep you from socializing with your own friends,if she doesn't like them-there are many choices of how to socialize outside the house. Do you enjoy any sports? Have any hobbies? You must continue on with YOUR life.

A very good thing to keep in mind is what I call the martyr complex. I watched a good friend care for her mother with Parkinson's for many years. She refused any suggestions I made for support groups,outside assistance,etc. I gradually lost respect for her as she continued to "suffer" and I simple got tired of listening to the constant gripping. You have a good outlet here on BT,we will be supportive. You do however risk your friendships & even family support if you keep doing it all yourself & allow it to destroy your own happiness.

You can be compassionate & loving while still maintaining a life for yourself!

And don't get on the guilt trip train cause it goes straight downhill!

Good luck to you & please don't take me for a mean old witch! I'm trying to be practical......Buttons

P.S. If you don't already have a dog you might consider one,they have saved more than one person's sanity on this site!

[garboon]

Thanks to all for the great thoughts. I have made a new appt with a therapist to be able to talk about this and maybe get some fresh ideas about how to cope and perhaps motivate and cheer up the wife. Right now I am almost too tired to type so I must go, just wanted to give a quick thinks - this is a great site I have found ;-)

[joy]

hi again garboon

it is great to hear you have a plan. You really need one withall that is needed of you at this time. I am big fan of making a plan, for myself, for daughter who is in an iffy marriage (putting it mildly here). But it is most important that you take care of yourself and never forget that. please keep us informed.

[Buttons2]

gaboon,yesterday my thoughts were concerning you & the daughter. Today I'll throw out some thoughts about your wife.

I have become very reclusive myself. Won't go into my health issues right now-but I know what it's like to lose friendships when you become ill & have your family not be very supportive. Especially when you appear "normal". Nobody can see someone else's pain. Many of us here share this in common.

One reason you will notice the same people on this forum. We bonded here the way we no longer can in our real lives. It's actually our lifeline in many ways.

I hope you have a good therapist. Keep in mind we never charge for our services here:rolleyes: Also hope you are enjoying good health yourself! I've seen over & over how caretakers can become ill when they give up their own life to care for others. It's a shame cause we all need balance in our lives.

Have a happy holiday today,perhaps share a laugh with your wife over something! I realize heat is very hard for her to tolerate so guessing summer is the most difficult time for her? And I forgot to mention yesterday that many people have been helped with nerve pain,brain fog,etc. by taking B12 Methylcobamin. It sure helped me. At one time I could barely walk & couldn't recall my own last name or my phone number! This is a very cheap vitamin,readily available & worth consideration even if blood tests show high (mine was over 900). doctor's are seldom aware of the benefits of this type of B12. We have an excellent vitamin forum here,when you have time you might read Rose's website.

Take care & HUGS to all of you!
Buttons

[JAVISI]

Gaboon,
I sure hope that you can have a wonderful 4th. To be able to relax! I often find that hard to do. I have so many things that I could be doing or should be doing but there will always be housekeeping. Your daughter will not remember what the house looks like at her age. But she will remeber the time you and your wife spend with her!*cg07

The best thing you can do for your children is to love eachother. I do agree with Buttons that she may need to get some motivation. I understand that she is depressed and in pain but just laying around will not help that! I know because I have been there and done that like most of us at one point or another. Encourage her, tell her how you feel, tell her she is not a burden, you love her but you are having a hard time managing everything!*heart

I am glad that you are going to a therapist. It is a good start! Would your wife qualify for home health? I know that some churches have respite care, to give you a break. I so hope that you can get some help soon! Please come back and share. We all bond togeather and help eachother here!*hug

Dreaming Big and Reaching for the Stars! ((hugs)) Javi

[Tootsie]

gaboon, I read your post the day it was made but didn't feel I could reply until I had followed your link to the site describing your wife's condition. Since then, I see that several others have made suggestions that I concur with and support.

First of all, you are a caregiver. The basic rule for all caregivers, is that they must take care of themselves first. While this may sound selfish to some, it is not. Your wife and your daughter rely on you. Therefore, in order to meet their needs you must first deal with your own. Someway, somehow, you must find time for those moments to replenish your own psychic energy.

I am glad to hear that you will seek help from a therapist. I do hope it is not the same one that your wife sees. Someone who has been in therapy for years, is not making progress. No matter what the difficulty, at some point, the patient must decide that these things happened, or some tragic event has affected their lives, but it is now time to move on.

From your original post, it seems as if your wife has been the one deciding how your household will be organized and run. From now on, you need to simplify those daily tasks, and obtain some kind of relief either by purchasing help, or eliminating the need for it.

I will look forward to your posts, even if brief, as there are other thoughts I have, that may be of help to you. One more well meant suggestion is not always what is needed at any one particular time. Cheerio.

[JAVISI]

Garboon,
I have been wondering how you are doing? I hope things are going well and that you do not rushy so much that you don't take some time to read these posts. Even if you need to vent again! Feel free! You have many people here that are wanting to know how you are doing!

Still Dreaming Big and Reaching for the Stars, although they seem so far away! Javi