The man I married

[jaspore]

I would have never thought I would be writing this............
not six months ago.
I'm sort of a newlywed, really........3 yrs .
It's been rocky to say the least........mostly, because the stress of a previous bad marriage, and a long bitter divorce, has taken its' toll on my physical being..........
since re married, I've had to have a complete shoulder reconstruction and a hysterectomy...........am still battling for sufficient child support...
and have two wonderful teen age sons...........
they're my pride and joy.
However, since October , I've been very sick........the compassion is gone, the understanding is gone, and I'm sorry to say...I sometimes feel the love is gone. Not mine...........I love my husband very much.
I have self dx'ed myself with C Diff..... I've been to a GI doc that concurred...but I have not had a positve or negative test for it.....
I'm in such bad shape by the time I see docs, they put me on the AB's right away..........In the beginning, I was tested for parasites....which was negative, but to my knowledge..........never tested for bacterias.
I dxed myself after reading the pharmacy sheet of Clindamycin. I felt that a supreme power enabled me to learn about it, else I would still have D! I had it for 16 days straight, every 15 or 20 minutes....
Went to the dr..............had x rays, swollen right colon...........he called it gas, even though he knew I had non stop diarrhea.
My doc calls in what I tell him to.............and I feel I'm lucky that way.
Problem is, my husband acts oblivious to what I'm going through........
He doesn't even want to hear C DIFF, and I don't know if he even knows anything about it? He once told me , "what doctor told you that you defiinitely had that?".......Then he bit my head off.........
I've sent him media articles, but I have no idea if he's read them.......
It's like it has to be unspoken....and I am to continue to perform in the wifely duties...(not the fun ones).....the shopping, cooking every night, cleaning, laundry, running the boys around, lawn work, etc.....................
It is expected.....period. I'm a stay at home wife/mother...........
which is something I recommend you never let your daughters do!
The man I married, was a thoughtful , loving and compassionate person.........we were soul mates........and I still dream of growing old with him..............
but I do believe, the majic is gone .
Perhaps my health, or lack of, has just been too much of a strain on our relationship..........for I feel he has forgotten who I really am, and I'm not seeing anymore who I thought he was.
I've always been considered high energy........can't sit still, HAVE to be doing something.....didn't watch tv, had tons of hobbies...........
worked like a man, and loved every minute of it................
This is difficult for everyone, but no one more than me..........
I don't want to feel sorry for myself, for that would be ungrateful.
God is good to me.............heck, it could be a terminal thing, and it's not!
But I miss who I was...........I miss the energy..........I miss it so much!
I miss the man I married...........
I don't whine when I don't feel good...........I just don't do what I physically can't do, and many times I push to do what I'm not sure I can physically do...........I try to keep going........and most times, I do.
The depression is setting in though...........I'm menopausal due to the hyst, fighting hypothyroidism which has worsened with C Diff, nicotine withdrawal, and now C diff.......6 months, 4 occurrences.
I feel like this forum is my best friend these days.............
my friends obviously don't care enough for me to even look this up, which my family is just as guilty of.
Every time friends call...........I have to tell them what it is I have again......
most have quit calling.
My sisters and mother care, but they're far away..........
I feel so lonely, so tired, and so confused. Hubby just stormed out of the house a few minutes ago, because I didn't buy chickens, but I bought everything else we needed.. The store was out, and I was too tired to go to another grocery store. Grocery shopping takes so much energy.............(while he was hanging out at the marina.)
I'm not thinking clearly these days either......................but right now, I feel like an insignificant human being with no importance at all, that is quite the inconvenience for the family I have lived for................
At the moment , I haven't the will to go on?
wanna cheer me up?:)

[Jenny]

Jaspore,

I'm so so sorry that you are feeling this way. I'm blessed that I have a husband who is of great help to me, though he has days when I'm sure he is very tired of doing some of my daily chores.

I'm on vanco again, this time for a month 4 x a day. I'm feeling the best I have since I got this. I feel like I'm really winning this time and without the flagyl my energy is coming back. The only reason I still have my husband helping me at this point is I have rheumatoid arthritis which is rampant at the moment because I'm off all meds for that, not even allowed tylenol at my ID's request. Tough it out if I can he said.

I'm not wanting to gloat just show you that it will get better and for everyone it takes a different amount of time. Hopefully when you're on the road to recovery your energy will come back and along with it the magical spark and your smile.

My husband hated seeing me wince in pain, I had a constant frown, rarely smiled for the longest time. I do believe it is hard on them too. They are helpless to our pain, they can't stop it, but I do believe they should at least help with some of the house work, including your teenage sons. I wish you well and suggest you start dropping hints for mothers day, this is one they definately should not forget.

Take care of yourself,

We are here for you,

Hugs,

Jenny

[mayotte]

I think your feelings of hopelessness have been shared by many on this site. I have been married for 36 years, and I think this disease has been our biggest test. Until someone walks in your shoes, it isn't easy to understand what c.diff does to our bodies, both physically and mentally. Please hang in there and be sure to turn to this site for support.

[feelinghopeful]

I hate to say this but... it sounds like he's not the man you thought he was.

Anyway, back to you. Have you considered the infusion? I did it on the 20th of last month and, knock on wood, am feeling terrific with no antibiotics for two weeks now. I've prepared myself for a relapse but will simply do another infusion, possibly with another doner. The one I used did have a history of antibiotic use but is very healthy regardless and he's all I had. Apparently whatever bacteria he did have was good enough to do the trick. He is my boyfriend of a year and has been through hell with me for some of the same reasons you describe. The difference is he has not only emotionally supported me in this time of incredible need, he's cooked, cleaned, shopped, given me rub downs when I've been utterly despondent. Has cleaned up after me, cleaned the bathrooms when I couldn't bring myself to do so out of terror. He does at times tell me to stop talking about C-Diff, but who can blaim him. We become obsessed with it -they really don't completely understand - can't completely understand. Who can expect unconditional empathy all the time. I'm incapable of it and don't expect it.

Get yourself better, remember this time in your life when you do and THEN ask yourself, is this the man you want to grow old with? Really? There may be far worse times ahead. Is he up to it? What if you become infirm? Could you rely on him? Just a humble question for you to ponder in the future when you're not so vulnerable. I'm very sorry you are so vulnerable right now. It's a terrible feeling. I have been there in spades. But you'll rise about this if you want to. Do not give up. Stand tall. Become whole again. Get rid of this horrible infection and things will look very different once you're on the other side of it.

[Bobbie]

jaspore,
Have been married 42 yrs. to a man who sounds similar to your husband. He is helpful about picking up precriptions & food -- but that's about it, unless it's something is about HIM.

I was gong to make changes in my life until I got C. diff. & it left me with lots of problems. We co-exist -- not ideal but all I can manage for now. My mother is 9l -- dementia & other problems. He helped me move her here from MT & has balanced her checkbook, etc. (Which I thank him for -- profusely.)

The main person who have to count on is YOU. We are here for you & understand what you are going through. And remember depression & feelings of hopelessness are part of any chronic disease -- and for some reason, in particular in C.diff. because so many know little about it & don't want to talk about it's "ickier" aspects.

Hang on.

[ClDif]

Hi Jaspore,

I don't think you are pushing away love, are you? Whatever it is that is causing you to feel like you are - what you need is for yor husband to care and you are not getting that empathy and that is making you feel very alone. I can relate well, was in a situation similar to yours once and there is no lonelier feeling in the world than when you think you have a partner who should be there and who is just not. Be it out of an inability to face whatever is going on, fear or just plain ignorance.

Had you been together a while before getting married? My relationship back when I was sick was still young and of course it is especially hard for a partner to see a light at the end of the tunnel if the majority of time spent together is tainted by illness. I have never felt so alone in my life, not before and not after. It's so much easier to just know you are on your own from the start and not to expect anyone else to be there than to believe there should be someone there to hold your hand through something and for them to just not be or even turn against you as happened in my case. I got yelled at, told to pull myself together, that he was so sick of having a sick girlfriend... Awful. Makes you feel ashamed for being sick even more than you do anyway plus you realize that the other person has no idea how "tough" and how much of a fighter you really are, who you really are that is...

Have you tried telling your husband what it is that you are missing? Have you signalled that you understand how hard this is on him as well? Even if he can't turn around who he is, maybe just a hand reached out every now and then, a little compassion and some honest interest in what is going on would be all you would need?

I have often found that guys can't deal with feeling helpless and that rather than admitting that they have absolutely no idea what to do, they get rude and take off. Maybe that's his problem? Overwhelmed by the problems, feeling lost himself, confused and wondering which is the true you?

Don't doubt though what you are feeling. You know your body best. If nothing else helps and you can't get through to him, maybe you can take some time off just for yourself to remember who you are and to trust yourself again and to try to sort this out yourself, even if that is very sad. I have been doing the same lately, after the experience I had I don't even try to rely on anyone other than myself. Quite sad, and I am not planning to keep this up, but right now dealing with emotional disappointments on top of everything else would be just too much to take. But how nice would it be to not have to be strong at all times, to just be able to rely on someone else every now and then... So, I completely understand how you are feeling. Hang in there, don't give up!!

[jaspore]

Thank you for your kind words, many of you, especially CIDif.
You were dead on.
Roy, I know you mean well...but you're way off track.
SOmetimes all these emotions are just overwhelming,and I feel out of control.....
I live my life treating others the way I would like to be treated.......
and like CIDif said, sometimes you just want someone to lean on, and to not be the one others lean on, even if for just a short time.
It is tough, but I am tougher........I'll be okay...........
Roy, I'm not sure if you read the same thing the others did?
Thanks anyway.

[cindym]

Chronic illness takes its toll on even the closest couples. It totally depletes the energy out of the relationship. It is not that they do not care......they just have never been as ill to know what it is like. Think back to the days prior to getting sick-------would you have ever thought you could feel so rotten and not be terminal? In my case I never knew a person could be so ill and not die. I have dealt with this beast 7 years (this August) and my whole family has gotten sick to the core of the thing. They have no clue what it is like to be me and I realize they must think that I am a hypochondriac since I am not sick on a daily basis. I have had dirty slurs said to me that I get sick conveniently to avoid doing things. DAMN I WISH THAT WERE TRUE!!!! They have no idea how devastating it is not to be able to plan ANYTHING and be sure you can carry through. However, I also have been on the otherside as a caretaker in the past and I know their role is also very hard as they just DON'T GET IT because they do not feel it. Cdiff is one of the worst conditions I have ever witnessed in my 57 years because it is not consistent and forever changing. I finally had to decide to take care of ME and tell people to KISS A--! You would be amazed how much better I feel since I quit taking all the slurs and insulting remarks. Family or not.......I go through enough without dealing with ignorance and people that have no concept of the depth of my suffering. On my bad days I use to FORCE myself to carry on the best I could without complaining and be miserable the whole time if we went anywhere........NO MORE.........If I do not feel well then I take care of ME because the others will never understand anyways and my suffering to comply with their plans will never change that. So, what I am saying to you is understand that your husband is human (although at times I question if mine is!) and not ever being as ill as we are they are totally unable to believe the seriousness of our symptoms. I have learned to just role with the punches and consider the sources! I have made a pledge to myself if ever I am totally well again there will be big changes in my life, in that I will be more of a "ME" person as they all seem to be now! Hang in there as cdiff is a bumpy road but passable!

[klt03301]

Hey Jaspore. I can somewhat relate to your post. I'm so sorry this is happening between the two of you. Prior to getting sick, I was the caretaker in my relationship with my boyfriend of 7 years. I can't even begin to tell you all the things I did...I was like a ball of energy and could go all day long. I miss those days terribly.

Since becoming ill, he has withdrawn, and we don't see much of each other. When he was here with me at my apartment, it annoyed him to have to cook and clean, and follow my hygiene rules, especially in the only bathroom I have. Tried to explain to him that it was protection for both of us. Oh well. He has not gotten C Diff, thank God. I miss him, but what am I going to do? It may be for the best, anyway. As for you and your husband, I hope things get better. It's extremely difficult for both, and I had to keep telling myself that. I don't have children to take care of either, like you do. I have a grown daughter. I salute all of you who have kids that you're trying to raise while fighting this battle. I'm exhausted and I don't know how you do it.

I've felt ALL of the emotions you've expressed. I still cry just about every day. I never know what I'm going to wake up to. Is this going to be a fatigue day, a pain day, a bad tummy day, or can I do what I'd love to do, which is visit my daughter and grandson? Those visits are short when I get them, because of one of the above problems.

I try to look at the positives. I've come a long way since February of this year. I couldn't eat or drink, even a banana made me sick. I'm still limited, but eating much more and healthier foods. I live alone, which sucks like you would not believe. I am 30 miles from my family which does't sound so far away, but it feels like so many more. I'm happy you have your children. They are a true blessing!

I hope you and your husband can just sit down and try to sort through your emotions and work it through. I'm pulling for you and hope you're having a better day.

Karen

[carrie]

How depressing of a thread was that to read! I just got back from a week away with my husband and it was great. One of his biggest concerns is that when I spend time on this site I get very negative about the future and anxious about all my ongoing symptoms. Before we went away I had finally gone to the doc for an anti depressant as I was crying every day, I did not take it as I wanted to wait until our holiday was over(I still have not taken it as my spirits are much higher since the holiday). I choose not to go on the computer while we were away and maybe it did make a difference. I love the support from this site but gosh it can be sooo depressing to read. I know there is the success stories and some humor but the amount of sad stories is so overwhelming. If in fact this is a chronic illness as my IBS does not want to let up no matter what I try I want to find healthy ways to cope with it and I want to continue to have a wonderful relationship with my husband, we were only married a year. Can we share some positive stories to lift our spirits. Thinking of everyone and wishing some lightness in your day. It sure helps me when the sun is shining.

[Bobbie]

Carrie,
You are right. Sunshine makes us all feel better. And there are many sad stories on this site. Illness often brings out the worst in people -- especially long, chronic ones, and C. diff. is not a "pretty disease." Sometimes it is better to stay off the site for awhile as it can be depressing. I stayeed off for a couple of weeks several times for my own mental health. Most of us have our own problems, & sometmes it's hard to have compasson for others.

My younger son had asthma & I helped form a chapter of the AAFA (Asthma & Allergy Chapter) here. We learned that over half of couples who had an asthmatic child got divorced because of the stress. (This was years ago. I don't know the stats. today.) My husband doesn't "believe" in asthma & allergies & gave me all kinds of grief over taking my son to an allergist. Now, he has developed allergies! Poor him!

Often people who are powerful in their careers (lawyers, docs., business execs. ) feel powerless with illness because they don't have control. It's easier to "walk" or to ignore.

If your relationship isn't happy, make a new life for yourself. Join clubs, do volunteer work, do what makes you feel good. If he doesn't want to share your happiness, poor him (or her).

Would any of you with wonderful, supportive. spouses or companions like to lend me your for a short time. (Only kidding -- I probably am probably the same age as most of your parents -- or grandparents.) I would have made different choices if I had my life to do over, but most of us all products of the time we grew up in or married in, & what we do is often affected by the values of our society. I would like to be young again & know what I know now! Boy, would I be something!!

[jaspore]

Carrie,
Sorry to hear that my post could have depressed you following a wonderful holiday with your husband of one year........

It's my understanding that this was the "vent" channel, and I, and obviously others, needed our little vent sessions.

I thanked, and would once again like to thank, all the posters that did respond to me with their issues, and in turn, lightened mine.
That's what I thought this was for............

Posters often share their good times as well, but in my opinion, when we really need each other most is when we are down and feeling alone.

Perhaps the forum designer should create a new section of..........
:) or :(...........then we could just search based upon our moods?

[Bobbie]

jaspore,
Don't worry about it. We all have different lives & different ideas. The "forun designer" is not gong to create a new section for different types of complaints. AND the mods. don't need more work.

We all have our "down" times & our "good" times. Let's all "lighten up."

Remember what we all have in common -- the "Beast." Where else are you going to go to find people who understand what you are going through?

[carrie]

Jaspore I'm sorry if I found the thread difficult, thanks for the reminder that this is the area designated for venting - what did I expect to read? God knows I have written many frustrated and sad posts seeking the support of others on this sight. I'm very fortunate to have a very compassionate husband and that makes me want to try harder to make life a bit easier for him, he is in a stressful career with many expectations placed on him but has spent many hours trying to find a way to make me better. He has affectionally held me throughout all of this and placed very few demands on me. It's funny you bring up the wedding vow, at our wedding I said I don't want to do the "in sickness and in health" vow as I'm a social worker in healthcare and have seen way to many broken marriages over illness. We instead wrote our own vows but do joke about the irony of me wanting to ensure we didn't say that vow because I can't imagine having to go throught this without him. I also had a bad first marriage so know what that is like. I do hope that the two of you are able to find it in your hearts to be close with one another as both of you need each other. It is very difficult on the spouse without question as they do not know this person we become when we sick physically and mentally. Sorry for not offering you compassion, I will not open a this area if I'm not up to reading those who are upset. I guess I just want to know things will get better and I will not have to live my life like this always. All the best to you.

[Nancy1]

carrie (and everyone),
Things will get better and you will not have to live your life like this always. Even if you have cdiff for a while, you will be able to cope with it better as time goes along. Never give up hope. See the Ten Commandments of Surviving Cdiff in the FAQ section.