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Scared for my Husband, my marriage, Fibro. is a destroyer

Sep 10, 2009 - 14 comments

The month of August was very stressful and September does not look much better.Tonight my husband & I had a fight and I am not sure if it is over. My Hubby is in bed. I am still digesting tonight's words of frustration and anger from both of us. All because of me and Fibro/cfsc.

Mike was put on Fetenal in August to control the pain that he has in his knees. He has no cartilage in either knee and yes in extreme pain. He works for UCSD University as a Landscaper so he is on his feet all day. Well back to the Fentenal: He is allergic to it and the side effects were horrible that he went through. I thought I was going to lose him.So our Dr. put him Morphine Sulfate, which I also take. He had allergic reaction to that, he has been having trouble swallowing since he has been on the Morhine. He saw a different dr. on Tuesday this week as our dr. was booked. I was thinking he was having anxiety attacks. An the dr. he saw said the same and prescribed anti anxiety medication I have never heard of. He took one when he got to work and later he was fighting sleep. So that medicine is out. He is very agitated which I understand. I have to call and schedule a barium swallowing test to see if he has anything that may be causing the swallowing problem. They want to rule out cancer,stroke, ALS, Parkinson's,throat cancer or MS. So this was also part of our discussion or argument. He is scared as am I .

His anxiety he says is because when he comes home from work he has to deal with me and what doing to us. As we all know each day is different for us. We may have a good day or more bad days and symptoms. I have been dealing with depression as most of you know. I was doing better until last month. Needless to say my depression and anxiety Fibro are out of control my Dr. says. He emailed me today and told me I am going to have to deal with the fibro flare, and he is giving me more Ativan to get through this.  It is hard to hear from your husband that if it wasn't for me and the Fibro. with all it's symptoms he would be happier and would not have any anxiety.
He told me all the things I do now that irritate him. I know living with someone with Fibro. and results from a TBI when I was 14. so my right Temporal lobe is dead.

I just want to go away where I will not be such a burden.He refuses my help or suggestions. He will not take his medications only his high blood pressure med. I don't know what is going to happen here.

I have no more energy for this, I love Mike but at the same time I am causing him too much pain.  Maybe I should leave for awhile. I cannot think anymore. I have done everything the professionals suggested and it has not helped. I HATE FIBRO. WITH EVERY BREATH I TAKE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I have tried to find the positive in it and for what?????????????????   I am out of words, thoughts. Nothing I do Matters to the most important person in my life  I do ask 1 favor please  pray for Mike and the test I need to schedule for him.  My mind is ready to explode. I just needed a safe place to talk. Thanks all for listening. I have no energy and my head is pounding.

hugs to all,

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Avatar universal
by smartypants40, Sep 10, 2009
Hello my heart goes out to you and your partner, i have no understanding what it is like to live with someone in pain, the last thing you need is sympthay so i pray for hope, hope that maybe the drs come up with new meds to help your partner and i think you need to talk as much as you need as this is a safe place to vent, and get real support from people you can trust.

Do something for yourself everyday even if it is small, going for a coffee with a friend, you need a sence of you to, if that makes sence.

till next time

751951 tn?1406636463
by PastorDan, Sep 10, 2009
Sharj, I will continue to pray for you and for Mike.  I will say that having a little space now and then can be necessary, but it is not the norm, nor is it God's design.  He made us for relationship, and there is no closer relationship on earth than that of husband and wife.  You both have invested yourselves in each other, and the payoff, while you experience some sampling of it each day, is really still on its way.

Pain is a horrible thing.  Loretta and I went through it together for years, and while I couldn't take away her pain, I know that I did what I could to lessen it, and to provide for her in other ways that she couldn't do for herself.  There were times when it was no bed of roses; that's for certain, but in the end, we weren't sustained as much by one another as by the angels of heaven anyway.  I am just thankful that God chose to give us His grace and mercy, and I know that He is willing to do the same for you and for Mike.  One day at a a time.  One hour, one minute, one breath at a time.

I would strongly suggest that you and Mike find a professional in your area who can help you to deal with the emotional and spiritual aspects of the stress that accompanies physical illness.  Until you do, the people on this forum are here for you, and I am, likewise, as close as your computer screen if I can help in any way.

Avatar universal
by kitonthemoon, Sep 10, 2009

You know you and Mike have my most sincere prayers and support.  Will email you seperately.  If you feel like talking, I will ring you today, if not, don't answer the phone. Just know that Jim and my thoughts are always with you and Mike.

Gazzillion extra gently huggies,

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by saveone, Sep 10, 2009
Shar, I don't know that we have ever talked directly, but when I read your journal entry my heart hurt for you.  The amount of strain you are under is humongous.  You must be a very strong person but even strong ppl need a safe place to land.  You have your friends here at MH but I agree with Pastor Dan, find some professional help and don't try to go this alone.

If your husband isn't willing, go by yourself.  You need to take care of not only your marriage but your "self" (The part of you that makes you uniquely you).  Don't let your "self" get lost in all the other stuff.  it is so easy, when we are carrying such a burden, to forget who we are and that we are important.  

I will pray for you both.  (((((((((((((HUGS)))))))))))))))))  terry

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by Lulu54, Sep 10, 2009
Dear Shar,
You and Mike have been through so much the past year or so, you are both bound to be frustrated by the medical woes. And pain adds to the tendency to be angry and lash out at those who are closest to us.  

I'm so sorry that you two are having this difficulty - the advice to find a counselor is a good one.  I hope you can pull this off.  

Mike's going to need you with his knee surgery as much as you need him.  I'm betting that today he feels contrite and is embarassed (like Joe Wilson!) by his outburst.

hang in there - you love each other too much to allow this to do permanent damage to your relationship.


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by Heather3418, Sep 10, 2009

The Caretaker of ANYONE that has a life-long illness, of course, has alot of pressure on them to care for their ill partner.  We will give Mike the benefit of the doubt.  We, as people with life-long illnesses (with me, MS) have to understand that while we are hurting and struggling to get through every day, our partners are under an extreme amount of stress also.

I am NOT saying that Mike should be saying horrible things, like he has said.  Overall, you have said in past posts, he has been a God-send in your life together.  Right?

Right now, both of you are going through a rough period.  Recognize that for what it is.  Instead of raising your voices to be heard, talk quietly and give each other a little space right now.  Also recognize that both of you are under alot of stress.  That by itself (taking out the illness equation for the moment) is enough to cause nerves to be on edge over the slightest thing.  Give time for things to calm down.

Even if you are mad as He l l at each other right now, whisper, "I love you Mike," every night before you go to bed.  Do not expect a response...but you never know, he may come back and say, "I love you too, Shar."  

I really believe that if both of you recognize what is really going on right now, you'll both realize that the love you have for each other is still there, it's just hidden underneath all the current problems right now.  Give both of yourselves a break.  Don't take anything personally, if it's said in anger.  A fight cannot start, if one side will not join the arguement.....

Hang in there honey.  One day at a time.  


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by TrudieC, Sep 10, 2009
I saw your journal and couldn't help but comment.  I am fortunate to be married to a man who is extremely open about his thoughts and feelings and it has helped me to really understand where men are coming from and why they might say or do things.  Early in our marriage my husband made me read Men are from Mars and Women are from Venus with him.  Wow, quite eye opening.

What I really took away from that book and from what my husband has taught me, is that it is men's nature to want to fix things.  They get extremely frustrated when they are not able to do so and many will lash out due to their own percieved inadequacies.  He is under stress from supporting you physically, emotionally and financially and is likely frustrated that he can't take your pain away.  Now he has his own pain and is probably worried about his abilities to support both you and feeling that he is failing.  

I hope that after a bit of time he will humble himself and you can have a good talk about how much you two still mean to each other and find a way to navigate these hard times together.  My husband has a tendency to blow up way out of proportion to the issue, always goes too far and says hurtful things, and then apologizes and says he hopes I got his real message.  Not an ideal situation but at least I know he doesn't mean it.

Good luck and I hope today is a better day for you both.

525545 tn?1293184794
by SharJ, Sep 11, 2009
I want to thank all of you and your comments on my recent journal entry. Mike is a very loving man and would do anything for me. He has been my knight in shinning armor for 37yrs. I can't imagine the kind of pain he is in daily, his job has him on his feet. He is a landscaper at UCSD Univerisity.  I know he didn't really mean some of the things he said.

In my heart I know we will weather this storm as we have before. Only now we are older and sick. Mike is afraid is something happens to him or his job how will he take care of me?  My Fibromyalgia is progressing quicker than my doctor expected.  You all have loving information or suggestions. I know Mike will not go for any counseling, that was one of the subjects we discussed last night. I just hope our IM Dr. will find the correct medication that will help him without any major side effects. Only he won't take the meds he has now- he is afraid of side effects.

I have been seeing a Social Worker, but not getting much help so far. I have been in therapy off and on for 15yrs. for severe depression brought on many issues from my childhood, but mostly why I am so depressed as an adult, part of it is from the car accident I was in with my Mom and 2 younger sisters. I suffered TBI and found out last August 2008 after my Neurologist ordered an MRI. He showed me the MRI  results and my right Temporal Lobe is dead. That scared me so much. It effects my cognitive issues, anxiety disorder. I was in a coma 3 wks. and lost a lot things, such as humor, problem solving, making decisions. Of course the Fibro just increases all that and more plus as we know the pain that comes with it and all the symptoms. I know stress can make the fibro flare.So  I did not sleep last night, cried most of the night. I am paying for last night's fight. My Dr. says the flares are not going to go away until things settle down with Mike's health issues. I need to find the strength and energy to support Mike through this. He still has to get the barium swallow test to rule out any major problems. I hope his anxiety will get under control for him.

I know God has given us this  challenge  of health issues. I pray that we will get through this. I have no more energy, I just want to not have to think about anything which I know is not possible. I am emotionally drained, I have no more energy to think, I could barely walk today. My pain is unbearable, but not like my hubby's. We had to go to grocery shopping and I used my power scooter and I could barely operate it. I know this is not helping Mike's anxiety. fibro, chronic pain osteoarthritis and depression, anxiety disorder & epilepsy and the migraines and now when I stand/walk I bump into walls or fall or can't walk because my legs are weak and shakey. this is what my sweetie sees me go through daily. I don't know how he has dealt with all this. I just want to help him feel better. I am at a loss of what to do. I took a 2 hour nap this afternoon. This is a lot for us as a couple to deal with. I feel so drained but the pain won't let me rest.

Again I want to thank each of you for taking your time trying to help. I am very lucky to have friends/family on MH where I feel safe and loved. I am going to take my bedtime meds. and pray that I can sleep.


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by peggy64, Sep 12, 2009
Bless your heart. You have so much on your plate. The Lord bless you and strengthen you and give you peace and joy in the midst of your trials.


Avatar universal
by stubby226, Sep 12, 2009
My mind is just a racing with thoughts to share.  There have been alot of good advice in the previous responses.  In March my husband and I had a significant role change.  He retired and I suddenly was hospitalized/almost died and am still recovering from the after effects.  My hubby has had to help me alot with the limitations I have.  The first thing my hubby and I do is pray everyday.  (there really is some truth to the family that prays together stays together.)  The second thing we try to do is acknowledge something positive about each other.  Everyone likes to hear someone appreciates them and/or loves them. It is always easy to forget somone's good attributes when in the middle of a crisis.  I am a firm believer in journaling with emphasizes on positive things hubby does and/or did.  In this crazy world of ours and being exhausted it is very hard to spend quality time together just sharing each others day and concerns.  If I have something to discuss or tell my hubby that I think may be a trigger I ask him out to coffee and share in a public but private enviroment.  People as a whole tend to not get loud and obnoxious in public. In my particular situation y hubsand get sick and tired of my medical problem.  Rightly so.  I have tried to limit any complaints to just 5 minutes per day.  the rest of the time i try to focus on positive things.  It has taken some practice and work but has pd off.  Now.. at risk of offending you I will add that medication is helpful and often needed but...freq side affects can be irratablness, frustration, forgetfulness, and any number of personlity changes.  Do you have medical insurance that would pay for pain clinic.  counseling will be hel[ful but if you are unable to put suggestins to practice why waste the money.  I have probally said to much and apologize if i caused any hard feelings.  I will keep you in my prayers.  I hope nothing but the best for both of you.

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by lonewolf07, Sep 12, 2009
That was a cruel thing to say about your Fibro,  You didn't ask for it.

Let him see a therapist about his role as caregiver and deal with it there.  Blaming you isn't going to help anyone.  Why should you leave?  Why can't he leave?  Do you think he would go to a therapist by himself and then with you?  Then he'd have some idea about what you are going through and vice versa.  

I'll pray and smudge for you both.  Hope it works out.

GIGANTIC HUGS .... Natalie

541953 tn?1262589826
by scaredmom330, Sep 12, 2009
My heart goes out to you as I also suffer from fibro, cfs, among other illnessess. my husband also has times where he doesnt understand the illnessess and the limitations. please try not to let this stress you out so much, you are right, it only causes flareups. try taking 30 minutes a day just for yourself, even if it is just soaking in a hot bath. good luck, and hang in there, pm me anytime you need to talk. also someone suggested journaling, that is a wonderful way to release your frustrations without causing an arguement with your husband.

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by Amanda1993, Sep 18, 2009
Hi, i cant help but comment for you. I want to just hug you and let you know that itll be ok, but it may not. You need to just do like other people said, take some time for yourself every day and hold on, for yourself, and your cildren. Dont eer give u!!

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by lvfrogs, Sep 18, 2009
It is so hard when both of you are ill and fighting chronic pain. I agree with Trudie. Men are fixers. They want to fix things right away and when it doesn't happen, they get frustrated. They cannot understand how women handle pain and keep going - so they think we are alright, when we are not.  I feel for you both because you BOTH need love and support. Do you have any family members nearby or could your church if you go to one, help you out with things like grocery shopping, laundry, housework etc? I have CFS and my best days are when I sleep late and take naps. Naps are my godsend and you definitely need them with your fibro. I will pray for you both and hope to hear soon that you can resolve some of these issues - that they get better for you. My heart goes out to you.

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